Life Since Harlie

Harlie Lost a Tooth

2012-02-01T10:07:00.000-05:00

I am at school with Harlie today. She was finally 100% better and returned to school yesterday (Monday was a school holiday). Cooper is back at school today as well (he got it, too). I got to exercise yesterday for the first time in a while and I think we are all happy again. Except for Tom, who has been in a grumpy mood lately.

I have a couple things I want to tell you about. I might break this into two posts, so check back soon.

First, Harlie lost a tooth the other day. I had no idea it was even loose. Tom gave her meds on Sunday night and showed me that her HME was bloody. I thought that was strange, but didn't think that much of it.

Then in the morning, I noticed that the cuff of her pj sleeve was bloody, too. Huh. Then I saw her wipe her mouth. So I asked her if her mouth hurt, and she looked at me and then pulled her lip down to show me her missing tooth.

I knew there was no way she swallowed it. She gags on the smallest lump of oatmeal! So I checked in her bed. Nope. Then checked the floor. And there it was. I think she must have pulled it, or fished it from her mouth and then threw it.

This is not her first lost tooth. I think she's lost a total of four during surgeries. And then Tom pulled her top tooth back in September. But that was because her dentist told us that it was loose.

It just feels weird to wake up and have it be out without any notice. This is just one of those "little things" that kinda stings. I guess I have to start checking her teeth. You'd think I would notice when brushing her teeth. But I didn't.

Luckily we go back to the dentist in February. Her one top tooth (the very first one she lost that was a casualty of her jaw surgery in 2009) still has not come in! I thought for sure it would have shown up by now. And that one is the one that will make the biggest difference in her appearance. Of course.

Okay, that's it for this one. More soon!
~Christy

Murphy's Worries

2012-01-28T15:02:00.000-05:00

Back in the first week of January, I was going through Murphy's school folder and found this:

Click on the photo to enlarge

Wow. I had no idea.

I mean, I know he's certainly worried about her in the past. But I had no idea he still worries about her!

In fact, my very first thought after looking at it was, "What's wrong with you, kid? She hasn't been in the hospital since, like, May!"

There are rare moments when I have the ability to be able to step outside of myself and see our life from a different perspective. And that was one of them. Having that thought - that he shouldn't have worries about her since she's gone a whopping eight months since her last major, traumatic hospitalization - is completely crazy!!! We hear moms and dads talk of a child's one hospitalization many years ago. They still remember it and are affected by it. Of course he worries. Heck, I worry about her life and potential death every single day.

It's time we face the fact that he's seven years old. And he hears things. He thinks things. And he certainly feels things.

After studying his drawing for a bit, I said, "Murphy, you notice that I take care of her?" And he said, "Well, yeah. You clean her equipment, and make sure it's all working properly, you suction her and all that stuff." Exact words. I was really surprised that he notices all that. And that he said the words "working properly."

He must know we are traveling for a big appointment soon (just a month away now). Yet, we haven't talked to him about it at all.

Things are going to have to change around here. We're going to have to be more open with him. And I signed him up for a sibling support group.

It's something that me and some other moms from my special needs mom's group (we meet once a month for dinner) have been wanting to do for a while. Luckily, we know a mom who is a clinical social worker and not only does she have experience in this kind of thing professionally, she also is a sibling of a special needs brother. So, she has a lot to bring to the table. And she has a great desire to do this for our kids. I am so, so thankful for people like her!

So, after some time of talking about it, she ran with it and they had their first meeting this past Tuesday night. There are five kids, in grades first to fourth, who all have a sister with special needs. They are going to meet once a week for six weeks.

I am so excited about this! I really think it will be great for them to be able talk about their feelings, both good and bad. And just to know that they are not alone. I would give anything to know what goes on in the meetings and what he says. From what I understand, the first meeting was more of a get-to-know-each-other kind of meeting. I'm anxious to see what he wants to tell me/talk to me about after a few more meetings.

And the bonus is that us moms can go across the street to a mexican restaurant to have dinner and a drink while they are meeting. No sense in going home just to turn around and come right back again, right? So, it's a win-win for us all!

That's it for today, my friends.
~Christy

It's always something...

2012-01-25T14:46:00.000-05:00

Harlie is still sick. Here's what's happened since my last update about her...

You might remember that I took Harlie to the ER for chest x-rays last Thursday. We definitely caught her pneumonia early (thank you Jennifer!). Because by Friday night, her lungs sounded worse and her sats (measurement of oxygen in the blood) were low. She's always had low sats (thanks to her heart defects) but in recent months I noticed a big improvement. She seemed to be hanging out in the high 80's - low 90's (which is fabulous for her!). But, when I put the pulse ox on her at bedtime on Friday night, her sats were in the low 70's! That's a big difference!

So, I hooked up all her equipment and oxygen and we went back to the trach collar for a few nights. I had to put her oxygen concentrator on 3 liters to keep her in the 80's. Geez. She must have been feeling really crappy!

She laid around watching movies for a few days. And we had to go back to all tube feedings.

By Sunday, she was on day three of her second antibiotic and she was acting much more like herself. She was playing - and not watching TV. Awesome!

What a big difference from our past experiences with pneumonia (which resulted in a hospital admission). You can tell she's getting bigger, including her good lung tissue, and stronger. It's really an awesome feeling to know she can fight off something like pneumonia with no hospitalizations!

So, off to school she went on Monday. It was more difficult to wake her Monday morning than usual. But, she's been laying around and we were off schedule, so I didn't think much of it.

But, around 11am, I got a text from Terri (her nurse) telling me that Harlie started vomiting in the cafeteria during lunch. And she said that prior to that, Harlie refused to eat anything by mouth.

Let me pause for a sec to say that everything we do to make her seem more "normal" - was totally negated that day. It can be pretty unsettling to watch her vomit - especially for kids. While she's throwing up, she's also producing secretions from her trach that have to be suctioned. So, you need to catch the stuff coming out of her mouth with something, while also using both hands to suction. It's not as easy as it sounds! Terri said it was so bad that someone had to go get a trash can. Nice.

So, off to the clinic they went to let her lay down while they waited for me to come get her.

She really was FINE on Sunday! I swear!

So, I cancelled her private speech therapy for that day (she has now not been able to go to this therapist since January 9th!) and on our way home, stopped to pick Cooper up from preschool. She wouldn't walk - so I carried her. While we waited in the hallway with all the other moms, Harlie passed gas. And OMG. My only hope is that since the hallway was crowded, no one would know where it came from. And if they suspected it was from my general area, I'm really hoping they would blame the child. I just wanted to grab Cooper and run. I already feel like an outsider there! Stinking up the joint isn't helping!

So, we get home. Thankfully. Because then Harlie had the worst, worst, worst diarrhea I've ever seen.

She's really going to kill me when she reads this one day. I'm sorry Harlie! I love you. But I have to write about my traumatic experiences to stay mentally healthy.

Poor, poor Harlie! First pneumonia and now some stomach/GI bug? What gives?!? And how in the world did she catch the stomach bug? The clinic attendant told me that the stomach bug has been going around her school. But she hadn't been there since Thursday!

She pointed to her stomach and made a really sad face. I asked her if it hurt and she said, "yeah." Then, just to be sure, I asked her if she was hungry. She said, "No!" Got it. So then I showed her how to tell me that her stomach hurts on her communication device. Just so she can be really clear in the future.

She laid around again, watching movies. And making lots of trips to the potty. We went back to pull-ups. Again. I will say this - she sure is a flexible girl. I know plenty of kids her age that would NOT want to wear a pull-up. But, she doesn't care. Or she realizes that's better than the alternative. Either way, I'm glad.

Later on that night I wanted to give her just a little food. She hadn't had anything but Pedialyte since before 11am. Harlie was walking into the kitchen and when I walked toward her with the can of formula and feeding tube in my hands, she turned around and took off "running" and jumped into the beanbag chair face-down, in the fetal position.

I guess that means your stomach still hurts?

I gave in. I didn't give her any food.

Today is Wednesday and she's still home. Living off Pedialyte. I tried to feed her some real food today. But, she really fought me. I only got a few bites of oatmeal and peaches in her. I really want to trust her and let her make this decision. But after years of fighting oral feedings, it's difficult to do that. She's been so good with her oral feedings these past few months that I am trying to listen to her more. I really think that will be better in the long run.

So, I tubed her a few ounces a little while later. She refused that, too, by covering up her g-tube with her hand. But, I was able to talk her into it.

So, we'll just see how she does with that. I don't know what to do about when to send her back to school. I'm afraid to push her too much. I guess I'll wait until she starts eating some normal meals (whether it's by mouth, or tube) and staying symptom-free (of course!). So, maybe I'll send her back on Friday.

At this point, she's already missed 14 days of school and left early several others!

Oh, and I caught a bad cold or something. It started for me Wednesday night. I don't know if I was just overly tired at the same time or what - but it really knocked me down. I was registered to run the Frostbite 15k on Sunday, but there was no way that was going to happen. I didn't want to walk into the other room, much less run 9 miles.

Tom made some homemade chicken noodle soup for me and luckily my nurses pitched in so I could get some rest. It was convenient that both Harlie and I were sick at the same time. Not.

Today I feel the best I've felt in days, so I'm happy about that.

So, that's it for this post. I've been meaning to post these photos of Harlie for MONTHS (like five!), but keep forgetting. So, I'm going to post them now. Just because I think they are really funny.

Even though this one is out of focus, I love it.

Ahhh, it's the little things...

More later!
Thanks!
~Christy

Tigon Mom

2012-01-22T19:22:00.000-05:00

Back in October, someone I know wrote a great post about the difficulties of parenting a child with major medical issues. I want to share it with you. What about the Tigon Mom?

I can't tell you how much this writing spoke to me. It's so hard when you don't feel like there's a place where you belong. I read Emily Rapp's article a few months ago - before I read What about the Tigon Mom? - and as I read it I thought the exact same thing. What does that make me? Where do I fit in? I'm going to expand on this soon. It's been on my mind a lot in the past few months.

Thank you to all of the people out there that get me and/or support me. Sometimes, it's a lonely place where I live.
~Christy xo

No Sleep Study!

2012-01-20T13:12:00.000-05:00

Harlie has pneumonia. So, no more waffling about the sleep study scheduled for tonight. My Mom came over yesterday to watch the boys so I could take Harlie to the ER and she called and cancelled our appointment for me. I'll call to reschedule later. It's really so typical. And I didn't want to go anyway. ;-)

Yesterday at school Harlie was really tired. And if you know her at all - you know she's NEVER tired. Like sleepy tired, I mean. She might tire from running around and need a little break. But, she hasn't napped in YEARS.

Terri (her nurse) said that she had to carry her to class. I dropped her off and I just thought Terri carried her to the sidewalk. Terri has to carry a lot of stuff. She's in school herself, so she has her own backpack with her school work, and then she has the suction machine (which is over 5 pounds), Harlie's backpack (which she's not allowed to carry herself because of her spinal fusion) and Harlie's lunchbox. To carry Harlie (who weighs 34 pounds) in addition to all that stuff is HARD.

She barely made it through circle time with her general ed class, but she participated more in her hearing impaired class. Then when they went outside for recess, she laid down on the bench. So, Terri took her inside her classroom to lay down. Her teacher asked Harlie if she wanted Buster Bear. NOOOO!!!!! No more Buster, please!

Harlie said no. Smart girl.

When her classmates came back in from recess, they went to art class. Harlie fell asleep in there, too. So, Terri called me and told me what was going on. By then she had taken her into the clinic. She slept in there until I came to get her. I carried her to the car and brought her home. I've been meeting Terri at school lately, so she doesn't come home with us (since her car is there).

She was on Day 7 of an antibiotic and she was getting worse. I haven't seen her this lethargic in a long time. So, I called Jennifer (another one of our nurses) and asked her about her symptoms. She stopped by and listened to her lungs. She listened for a long time and said she thought she had pneumonia. She said she could hear fluid in her left lung.

So, I called her pediatrician and told him that. He said to go to MCV's ER for x-rays. So, I called my Mom and she came over to watch the boys so I could take Harlie. When I got Harlie up from the couch to put her in the car - I had to carry her like a baby. She did not even want to sit up to sit on my hip!

We got there and the doctor listened to her for like 30 seconds. He said, "She sounds clear, but we can get a chest x-ray just to rule it out." Of course I had to explain her lack of a fever. Because that's always the first question I get asked - does she have a fever? Well, no. But, she never gets them, so please don't let that affect your judgment.

So, hours later, x-rays were taken and read. Pneumonia in both lungs. So, kudos to Jennifer to being able to hear what the doctor didn't!

They gave her a dose of Lasix to help her get rid of some of the fluid. And they put her on a different antibiotic and gave her a dose of that, too. Then they let us go home. It was about 10pm by then. She kept signing "car." She was ready to go! And when we left, she had a spring in her step and a big smile on her face. I would give anything to know what she was thinking. If only we could have a conversation...

Which reminds me...

At one point the doctor came in and asked me if it was okay if a med student came in to see Harlie because she had never seen someone with Goldenhar Syndrome. I said sure. But, it was a little weird to hear him talking to her and pointing out some differences in Harlie's face. I'm starting to wonder what Harlie understands and thinks when she hears people talking about her, or her peers asking questions about her. So, again, if only we could have a conversation.

Anyway, she's happier today.

She's home, of course. And not complaining or whining or asking for anything (other than movies). She's such a good kid. Really. She cooperated with everything and everyone at the hospital. And she couldn't be any cuter when she gets x-rays. She follows the instructions and holds really still. She's something.

Well, that's it for now. More later!

Thanks!
~Christy

Sleep Study or No Sleep Study?

2012-01-18T22:54:00.000-05:00

So, to add on to my last post - Harlie spent FORTY minutes in the bathroom at school today. FORTY. In a ROW! So, she went from having diarrhea to being constipated. With no help from me. Meaning, I didn't give her anything for her issues. I've been there, done that. I speak from experience when I say her having diarrhea is far less stressful than her being constipated.

So, I don't know how that happened. She's still on her antibiotic, too. Weird.

Poor thing missed out on FORTY minutes of her special education classroom time. And let me tell you - that time is valuable!

And, quite frankly, poor ME for having to stand there waiting. For FORTY minutes!

It's all over now. She's good.

And to make this sickness stuff even better... as is often the case with trached kids - it's perfectly timed. And my trach friends will agree. They always seem to get sick before a procedure or surgery.

Months ago I scheduled a sleep study. And it's Friday night.

I don't know what I'm going to get out of it. And I've been waffling back and forth about whether to go through with it for months. My decision might be made for me if she isn't 100% soon. And I mean really soon.

Here are my reasons why I think we should put her through the agony of a sleep study:

1. She can wear her cap for most of the day, most days (as long as she's not sick, of course).

2. Should we put her through another jaw reconstruction without just checking to make suuure that it's completely necessary for decannulation (getting the trach out)?

3. Maybe there's something I need to know, that I don't know I need to know.

4. She can lay on her back on the floor with her cap on, and still breathe. But she can't while sleeping. Is there another issue of which I'm unaware? Or does she consciously work harder to breathe while awake vs. sleeping?

5. I want her to have the blessings of her ENT to be capped. Yes, I've been capping her for months. But, he doesn't know that. And that makes me feel very bad. But, sometimes as a Mom, we just know what our kids can handle, even when there's no real evidence that they can. And sometimes, even stranger, there's actually evidence that they can't handle it. But, I just know that the evidence wasn't completely accurate. She was in a room full of people and she wasn't able to fully concentrate on breathing when he tested her with that gauge thingy. So, I want him to see that she can handle the cap. Which means I will have to come clean and tell him that we have a cap and have been using it and that I'm bringing it with me. I'll do that tomorrow. Or Friday.

Here are the reasons why I think I'm going to regret putting her through the agony of the sleep study (if we can go through with it):

1. I know she can't sleep without the trach. But of course there's a wee tiny bit down deeeep inside that has an ounce of hope. I guess it's better to know for sure then to be left wondering what if.

2. We're going to go up there, go through 45 minutes of taping, glueing, and torturing her (wire leads everywhere) to put her cap on for 30 seconds (which is longer than I can take of hearing her struggle in my own tests here) to realize that she can't breathe with it on. She will then sleep the rest of the night as usual (which is usually good, by the way - or at least I think it's good) and we will gain no valuable information whatsoever. I, on the other hand, will have a crappy night's sleep knowing some complete stranger is up watching us sleep. Creepy! I think I've seen a similar plot in an episode of Criminal Minds...

3. It's in DC, on a Friday night. Which I scheduled on purpose so she wouldn't miss school. But, now I'm questioning that logic. Friday night drinks or Harlie's education? Again, waffling...

4. I have to take her by myself. They will only allow one parent to stay. I guess to make them more vulnerable. I really need to stop watching Criminal Minds. Seriously - the drive there and back is what I'm really worried about. Well, I'm not worried exactly, it just sort of stresses me out. If she needs to be suctioned, I'll have to pull over on 95. And you know I'm going to be in the fast lane!

So, there seems to be more legitimate reasons for going through with it than not. More than likely it will be a big fat waste of time and energy.

But, hope is a funny thing. It doesn't take much to make you go through some crazy stuff.

Thanks!
~Christy

Class Bear

2012-01-18T08:56:00.000-05:00

Last Tuesday, Harlie brought home the class bear. Buster Bear is a very large stuffed bear and he's been around a long time. The kids take turns bringing him home to have "adventures" and then he goes back the following day. I did not know he existed until the day she brought him home.

Harlie has her likes and dislikes, just like anyone. Like stickers... She hates 'em. Period. I don't care what's on the sticker - she will not touch it. Even if it has it's back still on. She's been exposed to way too much medical tape in her life.

Another thing she doesn't like is stuffed animals. Ever since she was a wee babe, I've offered her different sources of comfort. You know, a little beanie baby, a stuffed animal (big and small), a blanket, a lovie, whatever. They've been chenille, silk, cotton, flannel, etc. You name it - we offered it. She's never taken to anything to provide her comfort. In fact, the only thing I could ever tell that she liked when she was stressed was to take the bottom of her shirt and wrap the material around her finger. Of course, most of the time when she's in the hospital she's not wearing any clothes. So, that's a bummer.

So, considering the bear was a stuffed animal and a rather large one at that (he seriously is her size!), she wanted nothing to do with him. He came home with a journal, and my assignment was to write about his "adventures" with Harlie at the end of the night, then return him and the journal the next day.

I looked through the journal and saw what some of the other parents had written so far. Some had included photos with happy kids hugging Buster - clearly excited about his presence and this homework. And that made me grumpy.

I HATE homework that highlights Harlie's differences from other kids her age. And it never fails to happen when I am not expecting it - feeling like a punch in the gut.

I tried to have them interact in some fashion - but to no avail. She was more interested in his duffle bag (which she climbed into and fit, by the way), his backpack (which was really cute) and his blanket and toothbrush. I thought, that's fine, maybe she'll ease into playing with him.

I had to feed her, so I put Buster in the chair next to her and told her she had to show Buster how well she can eat. She looked at me like I had lost my mind. Oh well. Can't blame me for trying, right?

After that, she didn't want a thing to do with Buster.

To prove to you how big he really was, here is Murphy's interpretation of him and Harlie...

See? I'm not exaggerating. He's big. I'm keeping this picture forever. I think it's hilarious.

Anyway, at one point I looked over and Cooper had Buster's toothbrush in his mouth! UGH!! It was a real toothbrush - so I'm sure that Cooper isn't the only sibling to put that thing in his mouth. Great.

That night I had a Girl Scout leadership meeting to go to, so I wasn't home to try to incorporate Buster into Harlie's life - or help him have "adventures." And I certainly didn't have time to take pictures, upload them to my computer, then upload them to Walgreens, pick them up and tape them into the journal. And whose homework is this anyway?!

A side story - I got to the meeting and saw someone that I knew years ago. Back before Harlie, I was a real estate agent and worked for a real estate broker and builder. One of my clients was this lady and her husband. They owned land, and we built their house. Building a house on a client's lot was a year-long process and most of the time we got to know our clients pretty well. I was pregnant with Harlie when we finished their house and they knew that things didn't look good for her survival.

So, she said, "How's the baby?" And I said, "She's a Daisy now." And I had to hold the tears back. Wow! Thinking back to how I was then - I was a working mom, we were a TWO income household (wowzers!), and we had no idea what was ahead of us. So much has happened in the last 5 years. It's really hard to believe when I think about it. We are so, so lucky to have her!

Then, I came home at 9ish - I had not eaten dinner (which equals a really Grumpy Christy), and instead of being able to blog or do whatever I needed/wanted to do - I had to make up stuff (okay, embellish) "adventures" to write in Buster's journal. I asked Brandy (she watched Harlie for us that night because Tom had a Cub Scout thing for Murphy that night, too) how Harlie did with Buster that night. She said she wanted nothing to do with him. She would ask Harlie if she wanted to brush his teeth or put him to bed and she would say "No."

Fine. Whatever. Out of all the things I have to force on Harlie - Buster is not going to be one of them. Besides, I wouldn't win anyway. There's very little you can force her to do.

Then, about 36 hours later - Harlie got sick. Coughing terribly, looking like crap, and clearly feeling miserable. We were up so many times during the night suctioning her (something we rarely have to do anymore). One of the problems with Harlie is that she doesn't run fevers. Even when her jaw was infected, or her back was infected, she never ran a fever. Those infections should have caused some hellacious fevers! This worries me, because a fever is your body's way of fighting infection and a good way for parents/doctors to know something is going on.

She also had something going on with her skin and the area around her g-tube. It was looking worse, despite all our efforts. We tried numerous kinds of creams, and we changed her g-tube, thinking there was a leak that allowed some of the acids from her stomach to be irritating the skin around it.

So, since I was meaning to take her anyway, I went on ahead and took her to see her doctor. He put her on an antibiotic that he thought would take care of both her skin stuff (he didn't know what the spots were) and her lungs.

She stayed home both Thursday and Friday and missed her physical therapy and speech therapy sessions on Thursday. Over the weekend, her coughing got worse and she coughed up blood all Saturday and Sunday. While that's not terribly uncommon for trached kids, it is still unsettling nonetheless. And then the antibiotic caused her to have diarrhea. Of course. Poor kid. Luckily that seemed to balance out after a few days.

Monday was a school holiday and to give her more rest and since I didn't think she could handle wearing her PMV or cap anyway, I cancelled her speech therapy for that day, too.

I sent her back yesterday (Tuesday). She did okay. But she was definitely not her perky self.

So, as much as I hate to do it, I am going to have to consider asking her teacher not to send Buster home with us again. She got nothing out of the assignment except for germs. I have no doubts that Buster gave her whatever cooties caused her sickness. While a typical kid can handle germs (like Murphy and Cooper for instance), Harlie has an open pathway straight into her lungs. It just takes a lot less to make her sick. It would be different if she wanted Buster to come home with her, but she clearly doesn't. And she missed lots of good, useful therapy, too. It's just not worth it.

On Facebook I kind of poked fun of the whole bear assignment. Okay, fine... I called him a "stupid bear."

But that's just my way of coping with Harlie's differences in this case. Murphy played with the bear - and it wasn't even from his class. I bet if she were a typical kid with typical life experiences, she would have been excited, too. But, she's not. It's that simple. No matter how hard I try - I cannot change the fact that she's had different experiences that have helped shape who she is today. And while she's not typical or perfect, I think she's pretty awesome.

At the end of the night, when I sat down to write in the journal I thought, do I tell the truth or do I lie? After some thought, I did something in between. I didn't make stuff up - but I embellished a bit. Harlie watched Monsters, Inc. and during the movie she asked for crayons. She went and got some paper and drew Sully (darn it! I should have scanned that in to show you. He's her best drawing yet!). So, I wrote that they watched the movie and that they drew pictures. I guess I did lie a bit. I wrote that she got him ready for bed and tucked him in his duffle bag (which she didn't) because she's particular about her bed and doesn't want anything in it (which is true). Half lie, half truth. I can live with that.

It is now Wednesday and I'm at school with Harlie, so I'll be blogging some today (I hope). So, more later!

Thanks!
~Christy

First Daisy Meeting!

2012-01-16T21:52:00.001-05:00

Tonight was Harlie's first Daisy troop meeting. She's been sick since Thursday, and hasn't left the house since she went to see her doctor that day. So, when we said we had somewhere to go, she was ready!

This picture isn't great - I had the flash off by accident - but it was the only one I took. Oops.

Tonight she got her troop number and the center of the daisy patches put on her tunic. Each meeting she will earn a petal to add to the center of the daisy. So, it will be cuter in time. Like this...

Lynda is the troop leader, and she did an excellent job! She had the girls captivated and interested. Well, except for Harlie... she's the one looking through the rolled up paper. A lot of language loses her every time. Grrrr!

She started the meeting with the girls each saying their name, how old they are, where they go to school and their favorite flavor of ice cream. When it was Harlie's turn, she used her device (with just a little bit of help from me) to answer all of those questions. Well, she doesn't like ice cream. But Lynda knows that she takes pureed peaches to school for lunch, so she said that if she liked ice cream it would probably be peach.

Lynda asked them to raise their hand if they have sold any Girl Scout cookies...

I wish I could say she heard the question and raised her hand on her own.
But, she didn't. I had to tell her to raise her hand.
Hey - at least she listened to me. That's something, right?

Yes, Girl Scout cookies are on sale! So, go buy some from a cute little Daisy (or Brownie or Girl Scout) near you! Since Daisy troops are the youngest of Girl Scouts (this is an all kindergarten troop) they start off from scratch - as a brand new troop. So, we have NO money to use for activities and troop stuff. And they make most of the troop's money from the cookie sales. So, buying yummy Girl Scout cookies really makes a big difference. Thank you to all of you who have bought cookies!!!

Their activity tonight was to decorate their own cookie.

Harlie decorating a cookie to give to her brothers (obviously).

And they also learned the Girl Scout promise, which earned them the center of the daisy patch. We ironed them on right there so they could all go home with their patches already on the tunic.

The meeting was an hour long, and while I know Harlie had a good time, she was tired afterwards. She's done nothing for days, so I guess that little bit of activity wiped her out. I am planning on sending her to school tomorrow (as long as she does okay tonight, of course). I hope she makes it through the whole day okay. I'll have to tell you more about her being sick later. No time now. Hopefully I'll post again tomorrow. I have a lot of catching up to do!

Thanks!
~Christy

Family Photos-December 2011

2012-01-13T14:03:00.000-05:00

I have SO much to tell you. But, until I have that kind of time, I just want to show you our latest family photos. You might have already noticed the new photos on my blog. Well, here are the rest of them.

We went in early December. It was cold outside. Not unbearable. But still cold. And our lovely children were far from cooperative. Well, Murphy was. Actually, I'm mostly referring to Cooper. As if you couldn't guess.

Paige Stevens took the photos. She's been taking all of our photos since our practice wedding photos - back in the summer of 2002. She's awesome. Even when I feel like the photo session didn't go well at the time, I'm always thrilled with the photos later. I don't know how she does it. Anyway, here they are...

He is a sweet one.

Her unhappy face. I just love the say she's sitting. So grown up!

I love this one.

We were all supposed to look mad. Clearly not all of us were listening.

He won't be able to pick him up much longer...

I love this one, too.

So sweet.

When are her teeth going to come in?!?!

Love.

This one is a favorite of Murphy's.

When Cooper saw this photo he said, "Cooper's trapped".

Yeah, he's cute. Although the beard is now gone.

Love!

And this one, too.

Love them all! But getting family photos stresses me out. I have to coordinate clothing, and schedules and times. What works with naps, weather, sunlight, etc. Harlie squints in any sun - really bad. So, I was worried about that. But, it was slightly overcast and we were in the shade of the buildings. So, that ended up working okay. If you look at the first few photos of her you can tell we were inside - she's not squinting at all. In the end, it's worth all the work and money. They won't stay this age forever. And neither will we!!! And Paige makes it work - even if you're not where you planned on being. And she makes everyone comfortable. Thank you so much, Paige!!!

More later!
~Christy

Back to the Grind

2012-01-02T09:22:00.000-05:00

I hope you all had a safe and Happy New Year. We didn't do much this year. Tom's Mom and Cal (Grandma and Pap Pap) came down to visit. Tom made a wonderful dinner with fresh and local ingredients. I will have to tell you more about it later.

Today is the first day back to school for the kids. And we don't have a nurse today, so I'm on duty. The house was a little crazy this morning but it feels good to be getting back into a routine.

Lately I have been giving Harlie a choice between wearing her PMV or cap. With her PMV she inhales through the trach, but exhales through her mouth/nose. With the cap she inhales AND exhales through her mouth/nose (EXCITING!). And she chooses the cap every time!!

She also said she wanted to wear her BAHA in class. We are really making progress in terms of devices.

Although I forgot to tell you that the FM wire system we worked for weeks/months to get was lost after the very first week. On The last day of school prior to the Christmas break, her hearing impaired teacher went to put it on her and the connection piece wasn't on her aid. I didn't realize that it could even come off! So, at some point between Thursday after school and Friday at 8am, it fell off. I can't remember if it was on there Friday morning when I put her aid on. Which kind of tells me it WAS there, otherwise I would have seen it looked different. I went back and retraced our steps, but couldn't find it. It is beige and very small. So now we have to get a new one. Ugh. Until then she goes without the system.

So, over the break Cooper really surprised us. I've been meaning to tell you that they have started to have their own conversations.

One day they wanted to play with the same toy. Harlie said "mine" and then Cooper said "mine" and they went back and forth until they both busted out laughing. I realized that it was their very first verbal conversation and I wonder if they realized it too since they laughed.

Since then they've had several similar conversations with words like my turn, and lights on/lights off.

One day Harlie signed that she wanted to watch A Bug's Life. We walked into the playroom, where Cooper was playing, and started to put the movie in the player. Cooper had his back to us and said "Mommy, I want to watch Scooby Doo" and then Harlie said, "No, uhuhuhuh." she was saying bug, but didn't have her PMV or cap on, so you couldn't tell that's what she was saying. But then Cooper said, "okay, I'll watch A Bug's Life." What?! I couldn't believe it!

Then, the kicker... Harlie was in the dining room, and Cooper was in the kitchen, two separate rooms, and Harlie was sitting in front of the computer telling me something she wanted. But I couldn't understand her. So I said (after many attempts to understand),"Harlie, I don't know what you want, you're going to have to get your talker." and then Cooper yelled from the other room, "Mommy, she wants to watch Pocoyo!" WHAT?!?! So I asked her if that's what she wanted and she said yeah.

Isn't that crazy?

I'm still floored. I mean, I know siblings help translate for siblings, but this is incredible! If you could have heard her grunts, you would NEVER have gotten Pocoyo out of it. And he was so confident. It wasn't like he was saying she might want Pocoyo. Crazy!

Okay, that's it for now. We're in her hearing impaired class now, so I want to watch. I will write more later.

Thanks!
~Christy

THE Christmas and Birthday post.

2011-12-26T13:39:00.001-05:00

So, yesterday, this little girl...

turned 40 years old!!!

It's hard to believe that I am no longer in my 30's. They were good years. And I hope my 40's will be even better.

So, to recap a bit..

Brandy came to visit last week. Harlie loves Brodie!

On Wednesday night we went to Niki's Christmas party. It was a lot of fun and we got to catch up with my running friends. And we got to meet Kat's baby, Fielder. He is SO cute!

Heather, Katherine, Kat (and her baby Fielder), me, Niki and Anna

Friday was the day that my lunch with Heather didn't work because I didn't have nursing. Well, I forgot to mention in that post that about 30 minutes after that fiasco, I got a text from our night nurse saying that she couldn't come in that night so we could go to my sister's party at her house. It was just a bad day all around. Maybe more disappointing, than "bad."

Tom felt bad for me, so he decided to cheer me up by giving me one of my Christmas/Birthday presents a little early. He gave me a photo album full of our photos from our session with Paige a few weeks ago. I didn't know they were ready and hadn't seen them yet. He already got them, had them printed, and put them in an album, so I was pretty impressed.

For my sister's party, I had asked if Brandy wanted to work a few hours. Our night nurse couldn't come in until 7:30, so I asked Brandy if she wanted to work from 6-7:30. She had plans for later, so she couldn't stay past 7:30. So, when Dawn cancelled, we decided we would go to the party for an hour, just to get out for a little bit.

When it was time to leave, Tom let me stay at the party and he went home! Woohoo!! So, my brother and his wife drove me home later that night. I didn't take my camera - so I don't have any pics. But, we had fun and it was nice to hang out and laugh after that crummy day.

Christmas Eve was a low-key day. Tom got up early and took Cooper to the grocery store with him. I stayed home the entire day.

That night we watched The Polar Express.

Then we put the kids to bed. I can't believe how easy they go to sleep on Christmas Eve! For all the Christmas Eve's I remember, my little brother (Cabell) and I played in our rooms for hours. And we would try to stay awake so we could see Santa. What's up with my kids? We tucked them in, and they just went to sleep. Crazy.

Then Tom and I had a late "date night" dinner. It's something we try to do about once a month or so. We put the kids to bed and then eat a really good meal (that Tom cooks of course) with wine and music. Tom made shrimp and grits with grouper on top. It was fabulous.

Since Tom had a brilliant idea this year for wrapping gifts - we had the time to relax. This year we ordered most of our gifts from Amazon using our Discover bucks. They were shipped to Tom's work. We had a date night a few weeks ago, and I met him at his office, we ordered a pizza and watched Christmas Vacation (my favorite Christmas movie of all time) and wrapped gifts. It was awesome. No stress - no worries. And we were mostly done weeks before Christmas.

After dinner we pulled out the gifts we still needed to wrap. And as I was going upstairs to check on the kids, I just happened to peek out my front window. At first, I thought I was seeing things. I thought, "What the hell? Is that a.. Flamingo?!?" So, I opened the door... and saw my yard was covered in flamingos!!!

I thought it was hysterical and I still laugh when I think about it. My friends Heather and Niki ordered the flamingo flocking for me. I had no idea there was such a service! Normally they come at the end of the next day to pick them up, but since it was Christmas, they didn't come and pick them up until this morning. So, I got an extra night of flamingos. I'm going to miss them. They were really cute.

On Christmas morning, we showed the kids the flamingos from an upstairs window. They got such a kick out of it, too!

We are terrible parents, and didn't take any pictures of them opening gifts on Christmas morning. In our defense, it's a little crazy and we seem to have to be helping and/or monitoring gift opening the whole time. And there wasn't really one particular gift that any of the kids really wanted this year.

The big hits so far are Harlie's Rainbow in my Room (which she is obsessed with and will not stop carrying it around shining a rainbow wherever she can), her Baby Alive...

The chair and magnifying glass on the floor were gifts, too.

and sleeping bag...

She wanted to lay in it in the middle of all of this commotion:

So, Tom had to move her.

Murphy and Cooper got some Hero Factory stuff and have not stopped ~~fighting over~~ playing with them.

It's not a great pic, but it's the only one I have of them with the Hero Factory guys.

I do feel bad for Murphy. Cooper seems to like Murphy's better than his own and will not share. And it is Murphy's toy. I tell myself that them working this out and learning how to deal with each other will make them better people in the long run. Murphy's really been patient and great with Cooper.

Murphy also got some Lego sets (which he's already built) and lots of books.

The "big" gift this year was from Tom and I - a Wii. After watching Harlie play the Wii Fit during physical therapy, I thought we could all have a lot of fun with one of our own. Of course, we forgot to get them a game to play with it. What are we, amateurs? Tom's mom is coming to visit on Friday, and we knew that she got them a game, so I guess we kinda forgot about the week of not being able to play it. Oops.

At first I was a little disappointed in the kids' Christmas experience this year. It just didn't seem like much at all. And since there wasn't "the" toy that any of them wanted, I just felt like they were a little disappointed, too.

But, we did not want to overwhelm them, either. Or overwhelm our house! So, we kept it pretty simple this year. But, later on in the day, Murphy was looking at one of his books and he said that even though he didn't ask for it - that he was really glad that Santa brought it to him. So we had a little conversation about how Santa knows him and knows what he'll like, even though he didn't know he wanted it. And Grandma hasn't even come yet! So, between us, Santa, our family exchange (which was at 1pm on Christmas), Nana and Grandma - I think he's going to be more than happy.

And Harlie and Cooper are the perfect ages. They loved everything. And Harlie is both easy and difficult at the same time. She's easy in the fact that she doesn't want/ask for anything. But, then I'm afraid some of that Santa magic is lost for her. And that makes me sad. What if she wants something and doesn't know how to tell us? But, I guess I have to remind myself that Santa knows what she'll like even though she didn't know she wanted it.

At 1pm, my family came over for our gift exchange. We draw names between us since we just got too big for our wallets!

My Dad, Tom and Cabell (my younger brother).

Is it a bad sign when you ask for beer for Christmas? He asked for and received some other things, too.

My Dad has taken up leather crafting so I got him leather stuff.

My sister's husband, Rick, opening up his gift.

Bruce, my big brother, opening up his.

Cabell opening his.

The whole family went in together and got my Mom a Kindle Fire. She's the biggest fan of the Kindle in all the world. Yes. ALL THE WORLD. Trust me.

Think she was surprised?

Think she liked it?

Do you notice that my nephew Charlie (Bruce and Nancy's son) is holding an abacus? One of the gifts that my Mom gave Harlie is that abacus and we had to give her a hard time that now Harlie has an abacus and an iPad. Funny stuff.

Rick and Sandy and their sons, Tanner and Cutter.

Maggie, calling her dad.

Nancy, Sandy and her daughter, Jordan.

Nancy (whose birthday is today - the 26th), me, Sandy, my Mom
Maggie, Jordan and Kelly

Whew! That was a lot of pictures! It was a great Christmas and birthday! I hope you all had a very Merry Christmas, too!

Thanks for reading, my friends!!

~Christy

Merry Christmas!

2011-12-25T23:10:00.000-05:00

Thanks to Paige Stevens Photography, I finally changed out the pictures on my blog! Whew, was that overdue! I can't wait to show you the rest of the pictures.

But, unfortunately, that's all I have time for now. It's late and it was a busy day, of course. So, I'll have to save my actual writing for tomorrow.

Until then, I hope you all had a very Merry Christmas!

Love,
Christy

Nursing

2011-12-24T13:55:00.000-05:00

In the last five years, I've hardly talked about nursing. We've been lucky enough to have found good, caring nurses that became part of our family. It's probably unheard of to have only had ONE bad nurse. She was our first.

As you may know, Brandy (our full-time day nurse) had a baby three weeks ago and is on maternity leave.

I was very happy to have found a fill-in nurse for her hours. And I like her. She seems like a hard worker. She is a single mom of two and she is going to school at night to get her BSN (Bachelor of Science in Nursing). Which, I think is pretty impressive. She's been very reliable and always sends me a text when she's going to be late.

But then, the last week of school before winter break, her car broke down. Both of us had to do some rearranging to make that week work. Fine. No problem. Winter break started, and I get a text that her mechanic is coming to look at her car, so she can't come in. After a few texts back and forth, she determines she can't come in on Tuesday, either. Wednesday was Jennifer's day to have Harlie. Then Thursday, she couldn't come in until 12 and left at 5. She was going to do the same thing on Friday. So, I made lunch plans with a friend (our Christmas thing). And then the nurse didn't show up!

Now I know this happens in the home health care world. But it's never happened here. And I do feel lucky. Heck - FIVE years into this life - I should count my blessings. Now, don't get me wrong, there have been plenty of changing plans, switching things around and accommodations (on all our parts) but never has someone just not shown up.

I get that it's Christmas and everyone is busy. And if she wanted the whole week off - I would have given it to her. But then I would have been able to make other arrangements for help so I could get something done myself.

So, out of her normal 40-hour week, she worked 5 whole hours. Wow.

We did end up communicating (via text, of course). She said she was planning on coming, but her boyfriend had the only car and hadn't gotten back yet.

What kills me is that she had to know by 11:30am that she wasn't going to make it to my house by noon. So, why no phone call? Or text?

And why didn't she have him just drop her off here, then go run his errands? Heck, I would have gone and gotten her!

She's a smart girl. She could have come to work if she wanted to. The fact is that she didn't want to. And that kills me.

I'm trying so hard not to take it personally. But I don't know if that's possible. Her job is my daughter. Does it get more personal than that?

Having nurses in your home - your life - isn't a party. And while we've been blessed to have such great ones - I would much prefer a life where the role of nursing isn't a necessity.

It's a weird relationship. Am I an employer? Or is the nursing agency the employer? But, they talk to me about their hours. And they show up at my house to work with my daughter. And they ask me for days off. But, they aren't really asking. They pretty much call the shots and tell me when they can/cannot work. When they can get here, when they must leave. Of course, that doesn't stop me from begging. And they have changed their plans for me and our needs, too. So, that has gone both ways. But there is way more demand than supply when it comes to nurses - so they got me. I'm the one who needs them. And if they don't like it here - they can go to another patient's house tomorrow.

The other day (when she came in at noon after being off for 6 days) she told me she was tired and needed a nap. Really? Is that something that you would tell your boss? Especially when you're taking care of a child???? And a child with medical needs to boot?!?!?!?

For years we had another adult in our home while we were sleeping. And for years I have done everything in my power to make them feel comfortable. To make them want to return to work another day. I have fed them, given them gifts and if we were rich, they would be, too. And even if our life didn't require nursing on a given day, but our nurse needed the hours - I'd make accommodations so she could have her hours. Our nurses getting what they need is a top priority for me.

So yesterday... I was MAD. And hurt. I've been understanding. I've been respectful. I've been accommodating. And you just don't show up? Pretty much the entire week before Christmas? WTH? How can I not take that personally?

And my lunch was with Heather. Who had to make arrangements for her kids to be able to meet me. Plus, I had to find someone to watch the boys. And I wanted to go. We do this every year and I was really looking forward to it. And for the first time in a while I wanted to burst into tears. I just felt so trapped.

Tom is off most of next week. And she's going to want some hours. I'm guessing she's going to need them after a 5-hour work week. But, I think I want us to be a regular family for a little while. Doesn't that sound nice? An entire week without day nursing? Is it possible? Of course it is! Especially since Tom will be home more. And since it's the week AFTER Christmas, I don't have any errands to run. Ahhhh....

Now, before this week - I would have changed our plans and made it so our nurse could get her hours. It's a full-time job - and I believe we both have an obligation to each other to respect that. But, I want to be a normal family for a little bit. So, forget it. I'm putting what I want first.

Now I just hope that doesn't bite me in the butt later. Because if she gets mad at me, she could say she doesn't want to come back at all. And when school starts back on the 2nd, I'm going to need her.

Which pretty much illustrates my point about nursing. To be a "normal" family and spend family time together - I'm afraid that I'm going to suffer consequences later. How abnormal is that??? This loosely reminds me of Stockholm Syndrome. I think that if and when our life ever becomes more "normal" I might have some lingering emotional issues I'll have to deal with.

Well, it's Christmas Eve and this wasn't a good post at all. I do have more in the works... As soon as I get another break. Every time I blog, either my kids are being neglected or I am forfeiting sleep. Right now, Harlie needs to eat. So, I must go.

And - just so I'm clear - I do love our nurses - the people. I just don't like needing them so much. See... these captors are so nice, I just wish I didn't need them for food, water and basic survival. That's why it reminds me of Stockholm Syndrome.

More later! Thanks for reading!
~Christy

Posts to come!

2011-12-24T00:18:00.001-05:00

Yes, I am still here! Things have been crazy since I've had so little nursing help this week. But I have some things I want to tell you about before Christmas. So, stay tuned. I'll be trying to work in some blogging on Christmas Eve. And I have NEW FAMILY PICTURES!!!! And a few old ones, too. I am SO excited to show you! So, stay tuned...

Thanks!
~Christy

Boston Children's Hospital

2011-12-16T09:44:00.000-05:00

So, I’ve been working on getting an appointment with BostonChildren’s Craniofacial Clinic since the middle of October. I can’t believe what they make you do just toget an appointment. They actually wantedto have her operative reports from her two jaw reconstructions before scheduling an appointment! I had to talk my way out of that one. If you’ve ever requested medical records –you understand! I did request them and Iam going to send them as soon as I get them. Which will be who knows when. Although I was told by their coordinator that they must have them priorto the appointment. So, I havemore phone calls to make.

Anyway, I provided her Medical Summary that I made thatsummarizes her life in 4-5 pages. Just abrief medical history…

I also sent photographs of Harlie that showed her mouth, jawand ears. And I sent her CT-Scan. And I just heard from the coordinator. They finally reviewed the information anddetermined that they think it would be worth our while to make the trek upthere for a second opinion.

So, our appointment is February 24^th. I haven’t flown on a plane since beforeMurphy was born. I’m not excited abouthaving to do it again. But, we’rethinking that Harlie’s going to LOVE it. So, I’m going to be strong for her. I hope.

The good thing about this clinic is that they have both aplastic surgeon and an oral surgeon. So,they have both options – jaw distraction and jaw reconstruction. And that’s the comparison I really want tosee. Well, I don’t really want to see it – but you know what Imean.

I just got another call from the coordinator and she isadding another doctor to our appointment list. She wants us to see their geneticist, too. So, I think that’s a total of 4 or 5docs. She said most of them will see herat one time, so she said to be prepared to walk into a room with a dozenpeople. No sweat. Poor Harlie. I can’t imagine being her sometimes.

So, because she’s seeing a geneticist – they want hermedical records for that specialty, too. So, that’s another several phone calls and faxes. Ugh. Iknow it doesn’t sound like much, but when you add up all these little things,it becomes a lot. If I could justrequest the records once, that would be one thing. But, I’ll have to call. Then I’ll have to fill out the form and faxit in. Then I’ll have to call to makesure they received it. Then I’ll have tokeep track of how long it’s been and then call again to make sure they areworking on it. Then, I’ll have to payfor it. And then, maybe, if I’m lucky,I’ll get the records before February 24^th.

And I have to do that for two different hospitals.

It’s now been a few days since I wrote that. Here’s the update:

I called the medical records department last week to checkon the status of our records (the jaw surgery ones). Back in October I called and had them fax therequest form to me. I then faxed itback. Two weeks later, I called to checkon the status. She said they neverreceived it. Yeah, right. Whatever. So, I faxed it again. This time Icalled right afterwards and confirmed that she received it and that she couldread the dates of service that I wanted.

Another two weeks went by. I called again to check on the status. A different person helped me this time. She asked me a bunch of questions and put me on hold – for forever. Not a good sign! She finally came back to the phone and toldme she had no record of my request. Areyou kidding me? Luckily I remembered whoI spoke with all the previous times. So,I told her and she said, “Oh, she no longer works here.” Of course. But she went and looked through her things and found the request andmost of the paperwork. Good. So, she mailed them to me. But they forgot one report, so now I have tocall and get that sent. It’s reallynever ending.

And after thinking things over the past few days, I thinkI’m going to tell the craniofacial coordinator in Boston that we don’t need tosee the Geneticist. We’ve been theredone that, and I don’t see that there’s anything else to discuss. And I don’t see having to pay for that kindof service when I don’t see a need. Andif seeing someone requires me to request medical records, forget it.

Now, I do want tosee an oculoplastic surgeon (to fix her eye). So far, I don’t have any prospects for that. And I think that would make a big differencein her appearance. Plus, she’s beencomplaining about that eye a lot lately. So, I’ll have to call her and see if they have that kind of surgeonthere.

Just found out that the oculoplastic surgeon is on maternityleave. Oh well, so much for that.

12/16/11

Another update since I wrote the last update TWO weeksago! If I just had more time, I wouldhave such a better blog!

Anyway, I got the medical records, but the one report that Ireally want (and feel they really need) is the anesthesiologist’s report ofwhen she went into cardiac arrest during her wire removal in February of2010. So I immediately called and askedspecifically about that report. Shesaid she’d get it and fax it. I had hersend it to Tom’s fax (since we don’t have one). Which, now I’m wondering if we should just get one. There have been so many times when it reallywould have come in handy.

So, Tom gets home that night and I look at what she sent –and it was operative notes (like a flow chart) not his dictated report. I really want to see what happened – whatwere the first signs of trouble, what they did, etc. So, now I have to call AGAIN and see why theydidn’t send me that report.

Ugh.

See what I mean about how many phone calls it takes to getanything done???

So, back to the appointment, I hope the weather cooperates and it's not too bad in late February (no scary snowstorms, please). The appointment is on a Friday afternoon and our plan is to fly up there in the morning. I don't know if we would be able to make it back to the airport in time for a flight back home that night (since our appointment isn't until after 2pm, and will likely run past 5pm). So, I think we might just plan on staying at a hotel to make it less stressful, and then fly back on Saturday.

That is just two months away now. I hope that the appointment will make me feel better about the decisions we have to make. Although sometimes, more information can make decisions even more difficult.

Okay, well that's it for this post. I am at school with Harlie today. It is the last day of school before the new year. I will work on another blog post while I'm here, so hopefully I'll have more for you tonight/tomorrow.

Thanks for reading!

~Christy

Big Development!

2011-12-14T22:43:00.000-05:00

On Friday night we had our Daisy Troop meeting. I am happy to report that we have a Leader! And I am VERY happy to report that it isn't ME! Thank you very much Lynda R. for stepping up to the plate and leading this troop for us! I am, however, her assistant. Which will be fine. I am actually looking forward to it! We will meet twice a month beginning in January. I really hope that Harlie likes it. And I am still Cookie Mom. Which, I hope will work out without too much stress. So, mental note - if you want any Girl Scout cookies, you know who to call!

On Monday, Murphy came home from school feeling crummy and complaining of a sore throat. His voice was awful! Well, to be totally honest, he sort of was like that Monday morning. But we made him go to school anyway because he didn't have a fever. We told him to try not to talk. But, Monday afternoon he wanted to sleep and was clearly not feeling well. He didn't even want to go to Cub Scouts - so that told me he really didn't feel good.

Late Monday night I heard from our nurse, Terri, that she couldn't work on Tuesday because she was having car issues and needed to take care of that. Total bummer. Because that meant I would have two sick boys at home, which meant there was no way I could take Harlie to school. So my only "healthy" child would have to stay home, too. It really kills me when she misses school because of nursing.

But there's no way around it. It's not like I can call the agency at 8am and ask for a nurse for the day. Even IF there was one available, I couldn't leave Harlie in his/her care with no training. And let's face it - people have to miss work from time to time. Even nurses. It just sucks that it means that Harlie has to miss school - especially when she needs every second of education she can get.

A friend of mine said "it sucks being a prisoner to nursing." And that is so true. The fact is that we simply could not live without it. While it is "nice" to know that Harlie has an adult looking out for her all day since she's basically non-verbal - it would be much better for her to be a typical little girl who could go to school, ask the teacher for help when needed, and then come home and tell me about her day.

Anyway, Terri worked really hard to rearrange some things so she could go to school with Harlie today. And I was so appreciative! At least our nurses know that even though we wish we didn't need them, we appreciate all their hard work and dedication to our family.

And - both boys went back to school today, too! Woohoo! It was a fabulous moment when all my kids were ~~somewhere else~~ where they were supposed to be - at school! Even though Murphy is still sporting a raspy voice, he was happy to go.

So, the main reason why I wanted to blog tonight.... I think we have officially turned a HUGE corner in the Holton Household. Drum roll please....

Harlie told me that she was HUNGRY today!!! And then she sat and ate her entire meal (pureed Ham and Cheese sandwich, pears and cherries mixed with a little vanilla yogurt and 5 ounces of Pediasure) without even ONE refusal. And she even self-fed some bites of the fruit!

I just couldn't believe it. She pointed to her belly and so I said, "Are you hungry?" And she said (verbally) "yeah." (She can't say S's). So I signed "hungry" and then she signed it. Then I got her Talker (which, by the way, she also asked for today when she got home from school - another big deal) and she used it to say "I feel hungry."

Hallelujah!

For real.

I felt that this was happening recently (her being hungry) but it has never been so clear as it was today. When it happened last week, I doubted my understanding of her - or I doubted what she was trying to communicate to me. But, there was no doubting today. Nope. She was HUNGRY!!! And then she ATE!!!! With NO fighting!!!

I don't particularly enjoy feeding my 5-year old like a baby on soft foods only, but when she refuses and it's a battle - I HATE it. So if she would just willingly eat her meals on a fairly regular basis, it would make a big difference in MY quality of life! And, honestly, feeding has been going really well these last few weeks. She still refuses some, of course, but for the most part, it's been going well. So, I can't help but wonder how long she's been feeling hungry.

Another bonus to her being hungry, is that maybe she'll tell us when we forget to feed her. And I know that makes me/us sound horrible. But, yes. It's happened once or twice. But, let's face it - life is busy and typical kids DON'T let you forget to feed them!

So, hopefully this is a developmental milestone that is here to stay! I wonder if it has anything to do with being in kindergarten?

Honestly, I can't believe the progress she's making. Some days are hard. Like when I hear other moms talk about their 5-year old and the conversations they have and the things they tell them about their day at school. But then, there are days like today, when I am SO grateful for something that most take for granted. And I can see the progress - clear as day. I have to try to not compare her to her peers. But that's difficult to do when this world is so competitive.

But, here's what I've seen progress since September:

She's more affectionate.

She's way more verbal.

She told me she's hungry.

She can write all her letters and numbers (but some of them might look funny).

She willingly (and happily) does her homework (writing assignments).

She draws pictures (rainbows especially).

She tries to walk up/down stairs using alternating steps on a regular basis.

She can blow a horn/whistle.

I think that's a lot of progress in just three months!!! I am so proud of her!

And since I haven't posted pics in a while, here are a few random ones...

Harlie being silly a few weeks ago.

Cooper, just because.

Me and Harlie at the park weeks ago.

Harlie and I at the pumpkin patch (obviously) in October (obviously).

Okay, that's it for my rambling for tonight. But don't worry - there will be more soon enough!

Thanks for reading!
~Christy

Week Update

2011-12-09T14:00:00.001-05:00

I have so much to write about. But, of course, I don't have a lot of time. So, I'll try to be quick.

Wednesday night Cooper woke up with a raging fever. We took his temperature and it was 103.7. He felt hotter than that. We gave him some Tylenol and sat up with him for a little while. His breathing was fast and labored, his cough was barky and his voice was very hoarse. I'm sure he has croup. After he calmed down a bit, we put him back to bed and he slept the rest of the night. He's had a fever off and on since then.

The next morning, even though he still had a high fever, he was bouncing all around. Lucky me. He has a fever, he's still all barky sounding, he's clearly sick, yet he's still just as active as usual. Yay.

But, on the positive side - I wasn't able to go run errands or go to the gym, so I had to stay home. Which was great because I was able to get a lot of stuff done around here that I've not been able to do. Like dust my bedroom.

OMG. The dust in our bedroom was horrible. I am shocked that we did not suffocate in our sleep. For real.

But it's all gone now. Ahhh. And I feel so much better.

Harlie's IEP (Individualized Educational Plan) meeting was Tuesday. You might remember this post about her getting her hearing impaired instruction in the special education classroom. Well, we had to make this change on her IEP and take out her sign language interpreter service. Now that she's trying to talk, she doesn't want to sign anymore. Which is fine by me. I still find myself signing to her on occasion, but I don't make her sign back to me. I'd rather her use her communication device anyway. Which she usually does without a fuss. Oh, and we added a communication device implementation plan to her IEP, too. Just trying to get that more incorporated into her day. I have to call our local representative with the communication device company to see if he will come to Harlie's school to train some of the staff on how to use it. I think that will help everyone if they understand the device a little better. Including me!

We've also been working on getting an FM system for Harlie's hearing aid. On Monday I took Harlie to her audiologist and she put a receiver or something on the back of Harlie's hearing aid. Then the school adds something else to her aid when she gets in class and the teacher wears a microphone around her neck so that when the teacher talks, her voice is predominant in Harlie's hearing aid over all the other sounds.

That started on Wednesday or Thursday and that has been going well. And while I was at her audiologist's office I borrowed a BAHA (bone anchored hearing aid) to try out. I guess it's not a bone anchored one yet - it's on a soft head band. And if it works, we'll have to get it bone anchored. Her hearing impaired teacher has been using it in her class (since it's only Harlie and one other little girl the teacher can focus more on it) and it's been going GREAT! In fact, her teacher called me this afternoon to tell me that she asked for it first thing this morning. And that was after only one day! She puts that aid on her non-hearing ear and it gives her sound through bone conduction. So, I bet she hears so much better with it on. I love that she wants to hear and wants to talk! Progress will come so much easier and faster when she has the desire and determination to do it. What a difference!!!

So, now I need to work on getting her the surgery to bone anchor that hearing aid. They won't do it before age five because their skulls have to be a certain thickness. They install an anchor in the skull and then the hearing aid clicks onto it.

I've also been working on getting her an appointment with the craniofacial team at Boston Children's Hospital. So, I'll post about that soon.

Oh, and a few weeks ago, I took Harlie to a speech evaluation with a different speech therapist through our outpatient Children's Hospital here in town. This particular speech therapist is really proficient with her communication device. I thought for sure that our insurance wouldn't approve it because we are already receiving speech therapy once a week. Without rambling too much (is that even possible?!) I scheduled that eval a long time ago. And at the time I was thinking about paying cash for the speech therapist we see on Thursdays, Becca. Here's who we see now:

Monday - Amy for 50 minutes (paid for privately, not through insurance)
Thursday - Becca for 30 minutes (paid for through insurance)
Various - Sharon for 30 minutes 2x per week at school

I was thinking of adding Delisa and paying her through insurance because her appointment would be an hour. And her office is just a few minutes away vs. Becca's office which is 30 minutes away. I would still keep Becca because I'm at her office anyway for physical therapy. Plus, Delisa would be the only one working on her device.

But, after gathering all my info, I determined that Becca was too expensive to privately pay (not through insurance). And I was thinking that maybe three private speech therapists was a little much. I mean, she's still receiving speech therapy at school, two times a week for 30 minutes each session. So, all in all, if I added another speech therapist she would be receiving ST from four different SLPs (speech language pathologists) totaling 3.5 hours per week!

I know it's kinda confusing. And I thought my decision would be made pretty easy because I thought for sure insurance would deny us adding Delisa since they already pay Becca for ST services. But, I got a phone call this week that it was approved! Who knew? So, now I'm trying to decide if four SLPs is really too much. I honestly don't know how we'd fit it in her schedule.

But, I'm torn because there's a part of me that thinks if we give her MORE therapy she'll talk SOONER! And isn't that a BIG deal? A big enough deal to do WHATEVER you have to do??? Or is it just too much?

So, this is what it would look like:

Monday - Amy for 50 minutes (paid for privately, not through insurance)
Thursday - Becca for 30 minutes (paid for through insurance)
TBD - Delisa for 50 minutes (paid for through insurance)
Various - Sharon (30 minutes 2x a week at school)

My gut tells me it's too much. But my heart says I want her to be able to communicate easier, better, faster, etc.

I don't know. I guess I'll continue to mull it over.

Oh, and I'm considering co-leading a Daisy Troop for Harlie. It's part of the Girl Scouts - you're a Daisy for KG through 1st grades, then a Brownie for (?) years, and then a Girl Scout. And starting out as a Daisy, you pretty much have to form your own troop. A group of us moms got together, but none of us really want to take on the responsibility of the Leader. So, we're going to try co-leading. I have no idea how I'm going to find the time for this. But, I was thinking that Harlie and I rarely get to do anything fun together, Mother and Daughter. All of our time is spent going to therapy and doctor appointments, etc. So, this might be a fun way for us to take the time out to have fun and it will give her even more exposure and practice to playing with other girls her age.

Of course, her repeating kindergarten will throw a little wrench in things - but I'll deal with that later - if she likes it.

So I told Tom all of this and he said, "Just talk to me before you volunteer for anything. And whatever you do - don't volunteer to be Cookie Mom." I said, "Oops. I already did. Volunteer for Cookie Mom, I mean." What? That means I'm volunteering to eat them, right?

Oh no.

Seriously, I was thinking that I would rather do that than plan an event or outing or something like that. Because I HATE planning stuff. So maybe if I'm Cookie Mom the other moms will go easy on me when it comes to planning ~~shit~~ wonderful activities for our girls to do.

So, our planning meeting is tonight over drinks and dinner. Eh, we're starting out pretty well so far! I can be bribed with food and drinks!

Now if I could just get that puppy, that would really round things out well around here!

Okay, that's my week in a nutshell. I hope yours was as fun-filled as mine was! Have a great weekend!

Thanks!
~Christy

My Surprise Birthday Party

2011-12-05T14:30:00.000-05:00

Back on Saturday, October 22nd, Tom threw a surprise birthday party for my 40th birthday (which is in December). I can't believe I am leaving my 30's. I still feel so young! It's so confusing!

He had been planning it for months - and I never had a clue. I think it's pretty much out now that I'm pretty gullible and somewhat unobservant. But I think it's more that I don't really think about stuff that doesn't directly affect me. I kinda live life wearing blinders.

He told me months prior that there was a work function at his job - Classic Kitchens of Virginia. Some wine thing. I know he told me more - but once I heard "wine" and "we have to go", I stopped listening. I mean, who needs to know more than that? So, we secured nursing and I put it on my calendar and went on with life.

I was supposed to run 20 miles that particular day. But, due to another IT band issue (same as last year in training for the marathon) I elected to skip the 20 (and run 12 instead) in order to preserve myself for the marathon. Tom was uber happy about this because he said that I would be too tired to have fun after running 20 miles. Which was probably true. So, I ran 12 and at mile 11 my IT band struck and I walked the rest of the way home. Total bummer. But, I was glad that I didn't try to run the 20. It was at this point that I started to accept that I probably wouldn't be able to run the marathon.

Grandma and Pap Pap visited that weekend. They were on their way to the beach to meet some friends. So, they stopped on their way down to give the kids some Halloween baskets and stayed Friday night. They left on Saturday.

We had a Groupon for The Phoenician - a Lebannese restaurant that we had not yet tried. It was due to expire that day, so we went before the "work function" since he said they were not serving food there. Let me just say that if you live in Richmond - and you like mediterranean food - you MUST go. It was FANTASTIC! We had baby eggplants, which were stuffed with something (I can't remember exactly) full of flavor and total goodness. And we also had one of the specials - artichoke salad. Unbelievably good!!! Everything tasted so fresh. It really was a fabulous dinner.

So, we left there and went to his work. He said the party was at 7pm. When we pulled in, the parking lot was full. I didn't pay any attention to the cars. Because, as I said earlier, I was not directly affected by those cars. I will say that I did think to myself, "Boy, people sure are prompt. I mean, who is already parked and inside before 7pm for a 7pm party?" Not me, I can assure you of that. If it weren't for Tom driving, I would have certainly arrived closer to 8pm. And in fact, I even tried to make us late. On the way there we were going to pass a friend of mine's house (Niki) and I asked Tom to drive by to see if she was home. I knew her boyfriend was in town and I hadn't met him yet. So, I thought if they didn't have plans we could have a quick drink. I sent her a text and we drove by, but they weren't there. Oh well. So much for my being late. And I was on a roll, too!

Anyway, so we walked in the entryway and Tom opened the door for me and I walked in and SURPRISE!!!! I was SHOCKED! I couldn't believe it! So many of my favorite people were there!

And Maryann and Cal - didn't go to the beach after all. Nope, they were at the party. The beach story? A lie. So many lies... And SO much fun! Luckily, I just happened to have my camera on me. And I didn't get near enough pictures! There were so many people that I never got pictures of. Darn it! And I admit that it's ridiculous that I'm in every picture. That was not how I wanted it. In hindsight I should have asked someone to pass the camera around. But, I wasn't thinking. All I was doing was talking!!! There were so many people to talk to! There were just under 70 people there! It was crazy!

Me and Donna

Heather and me

Shelby, me and Michelle

Me and Dad

My Family
My Mom, me, Sandy, Rick, Nancy, Bruce and Cabell

Me and Maggie (my niece)

Brandy and me

Me and Sarah

Maryann and me

The candy table

Melissa, me, Heather and Marcy

My Running Buddies
Me, Kat, Mary Curtis, Heather, Niki, Anna and Allison
(Niki wasn't at her house because she was at the party!)

Bill, me and Becky

Geoff, me and Bethany

Me and Cabell (my "little" bro)

Jackie, me and John

And the best part...

Opening my gift from Tom...

A Pug book?
So odd considering he's anti-Pug puppy.

"Open it" Tom said.

Lots of excitement...

It's a certificate to get our very own Pug puppy!

YAY!
I love all the fine print. Click photo for a closer look.

Thank you! Thank you! Thank you!

And then the Pug Cake Balls.

Aren't they adorable?
And yummy to boot!

The credit for the Pug Cake Balls goes to Adrianna. Tom met her through cycling. She used heart candy for the tongues. And somehow she cut brown M&Ms in half for the ears.

It was a fabulous night! And now to find our Pug puppy...

At the time, we didn't have a nurse to fill in for Brandy. But, now we do! So... we'll see how the search goes...

Thank you to all our friends and family who came to the party. And thank you to those who worked to help Tom get it all together and ready. And thank you to the Gunn's (Tom's employers) who let him have it at their showroom. It was the perfect place for a party. It is beautiful and comfortable and everyone loved it! And, of course, thank you to Tom. He is a wonderful husband. And I will never be able to re-pay him with a 40th birthday party like this! I went on ahead and told him that immediately after I realized all he had done for my party. It really was a wonderful night! I felt so incredibly blessed to have so many wonderful people in my life. And I felt so very loved.

Thank you!
~Christy xo

Weekend recap

2011-12-04T22:17:00.001-05:00

Had a nice weekend.

To quickly recap - we got family photos taken by Paige Stevens Photography. She's been taking our photos since 2002, when we got married. It's been a while since our last session - summer of 2009! And while I like the photo on my blog - I'm ready for a new one!

During our session she showed me a couple of shots on the camera and I was really happy with them! I am so excited to see all of them! It was pretty cold outside, so the kids weren't the most cooperative. And after I got home I realized that we never got a photo with just the three kids. At least I don't remember any. I don't know how the heck that happened. I think it might have had something to do with Cooper and his lack of desire to be a part of the whole process. He is no longer a new walker like he was in our last professional photo shoot. Nope. He's a confident runner. And he moves non-stop. I'm betting he has ADHD. But, it will be years before that can be confirmed. And, who knows - maybe he'll grow out of it. We an hope anyway.

So, I guess even if we tried to get the three of them, he wouldn't have gone for it. We did the best we could and that's all you can do. I know she got great ones of each of the kids alone. So, I can always do something with that.

Hopefully I can show you soon!

That afternoon Tom and Murphy went to go get our Christmas tree. We tried for a few years to go out and cut our own down. And while I liked that - I just think that's a vision in my head that will not go as well in real life. I want to start our own family traditions. But, I know that in reality, we will be constantly calling for and looking for Cooper. And I'm pretty sure there would be a substantial amount of yelling. Which really messes up my vision of wonderful family traditions. We'd be frustrated and exhausted by the time it was all said and done. And Cooper really needs a nap. Okay, fine. We really need Cooper to nap (remember my aforementioned ADHD suspicions?). So, in light of all that (and the higher cost associated with going to the Christmas tree farm) Tom and Murphy went to Lowe's. And a family tradition is born! At least until we can change it.

We put it up, but had to wait until the branches dropped a bit before we could decorate it. So, we did that this morning.

So, decorating the tree... another vision in my head that didn't go as well in real life. We put Christmas music on and opened the box and things started to go downhill. I can't tell you how many ornaments the kids have broken over the years. A few years ago I got one of those cute Hallmark mechanical ornaments on sale after Christmas. The next year we opened the box for the first time to put it on the tree. Murphy wanted to look at it. Understandable, it is pretty cute. And in the first minute of winding it up - he broke it. Ugh. And you'd think that I'd be over it by now. We still hang it. But now it doesn't move.

So, after repeatedly telling Cooper not to play with the ornaments, he broke one. It was a glass scuba diver I got in Las Vegas of all places, in November of 2001. I don't know why I bought it. But I liked it and at the time I was recently certified to scuba dive. Anyway, it's gone now, so I suppose it doesn't matter. I picked up the diver and the pieces on the floor and then realized that he had ornaments in each fist. So, a small tug of war ensued and I forgot to put the broken glass pieces elsewhere (than in my hand) so I got three small cuts in the scuffle. Cooper got time out. Yet my cuts still hurt and I'm pretty sure he has no memory of the time out.

Just making wonderful Christmas memories over here in the Holton Household.

Tomorrow we don't have a nurse. So I'll be going to school with Harlie again. It's actually not a bad day for me to go because Harlie has to leave early anyway to go to one of her private speech therapies. Yes, she sees two speech therapists. Actually, three, if you count the one at school. They all work on different, yet equally important things with her - so I think it's good. And I would have her do more if it were possible. But, as it stands, we are booked!

So, I'll write another post tomorrow while I'm there. I just won't be able to post it because the school system won't let anyone on Blogger. I've been working on a post from freaking October. And it's a fun post, too! So, hopefully I'll be able to get that one up tomorrow afternoon after we get home.

Thanks!
~Christy

Great day at school and Brandy's baby!

2011-11-30T21:55:00.001-05:00

8:30am

I’m at school with Harlie today (no nurse today), so I’m going to try to getsome blogging done.

Yesterday (Tuesday) I had a little pity party. It was picture make-up day at Harlie’sschool. She missed the first takesbecause she was sick that entire week. So, I picked out two shirts for her to wear, the one I wanted her towear, and a back-up just in case she drooled all over it.

Clearly, I should have reversed the order. I should have put on the back-up first, andthen had Terri (our new nurse) change her shirt right before pictures. But, I figured pictures would be first thingin the morning and certainly she wouldn’t have drooled all over her shirt bythen. I was wrong.

And it just made me mad that my 5-year old drools. It went away for a while. But, ever since her 6-year molars started tocome in, it’s gotten awful. There’s noroom in her mouth for more teeth. And Iknow it hurts her – even though she doesn’t complain. She puts her fingers in the back of her teeth– something she’s never done before. Shehas never “chewed” on anything – even as a baby teething.

Pictures were at 8am (she gets to school at 7:45) and hershirt was dry when I dropped them off. Ihad her wear her HME instead of her PMV to help reduce the drooling. She seems to drool a lot more when wearingthe PMV – I guess it takes more effort to stop breathing and swallow whenwearing it. I don’t know.

It just made me mad. I hate the drooling. And I knowI’m not alone. Drooling is a major issuewith a lot of mom’s with special needs kids. It’s just one more crummy side effect to deal with.

I was complaining to my niece, Maggie who came over to visitlast night. I said (okay, maybe I sortof yelled/whined), “What kind of mom has to pack back-up clothes for photos?”And Maggie said, “One with an awesome daughter, that’s who.”

Sigh.

She’s right. Harlieis awesome. And I AM lucky. I know that. But, sometimes the little things get to me. Luckily those pity parties don’t last that long. Especially when I have the kind of support Iget from my family and friends. Thankyou all for that!

10am

Right now, we are in Harlie’s hearing impairedclass. It is my first time watching herin this class. I can't remember if I told you already or not. But, we changed up her days a little bit. She now spends circle time in the morning with her general education class and then goes to the hearing impaired classroom for an hour and a half to get more concentrated instruction. I'll talk more about that later since we have an IEP meeting next week.

Anyway, there are just twogirls, Harlie and L. And I just heardHarlie count (verbally) to 30. Hernumbers 1 to 10 were clearer than I have EVER heard!!! I admit, I cried a little. She was understandable by anyone. And even her numbers in the 20s weregood! Then I feel bad for complaining aboutdrooling. I guess you have to take thegood with the bad.

And after seeing how she is in this class compared to how she is in her gen ed class, I am very thankful. She is a different little girl here. She participates. And she answers questions.

Right after HI class is lunch. So we went straight there. And for the first time, Harlie ate her pears. She has never taken a bite of her food for me when I've been with her at school. But, she drank some milk and almost entirely willingly, ate her pears. And during lunch, she smiled at her friends. And they even fought over who got to sit next to her. And she used her device to say their names during lunch. It was really cute. I have to say that I actually enjoyed my time with her at school today. It seems like she's liking school.

After school, I packed up the kids and me and Maggie went to the hospital to see Brandy and her new baby girl, Brodie. Maggie sat out in the lobby with the kids while I went in and visited with Brandy. I was dying to meet Brodie and I've really been missing Brandy. Here she is!!!

Me holding Brodie.

She looks so much bigger in the pictures than in person! She is a beautiful baby!!!

Hello cuteness!

After I left, I took over for Maggie and let her go meet Brodie while I stayed in the lobby with my crazy kids. When Maggie came back, Brandy and her husband Joe were standing behind her. They were awesome enough to bring Brodie to the door to the lobby so Harlie could see her! And she was awake!

Harlie acted all bashful and weird. She definitely smiled at the baby and wanted to get a closer look. So I picked her up and let her see her. After we said goodbye (the boys started acting crazy and I had to get them out of there) we closed the door, and then Harlie started crying. Like sad tears. I think she misses Brandy. It's times like these I wish she could talk and tell me what she's thinking.

Now that Brandy's had her baby, she won't be working at all for a while. And it's hard to know that we won't see her four days a week anymore. She is part of our family. And we love her. And I miss her!!!

Well that's it for now. Thanks!

~Christy

Quick One

2011-11-28T22:34:00.001-05:00

I hope you all had a Happy Thanksgiving. We did. We had most of my family over to our house. Tom made a wonderful dinner.

Here is a picture of the vegetables he roasted (before he roasted them)...

Aren't they beautiful? And they were yummy!

Tom and I did something different this Thanksgiving. We started the day off with some exercise. I ran the 5-mile Deep Run Turkey Trot. And then I went back home and picked up Tom and we both did Adrenaline. It is an hour long outdoor fitness class. It was great. There was a huge turnout. And we had a lot of fun.

It was a very busy holiday. And I was left with no time to blog. I wanted to write something about how we're so thankful. But, I think you already know that. So, I'll spare you.

I'll jump to today instead.

The weather has been great so the kids have been playing outside a lot. Yesterday, a group of kids in the neighborhood set up a lemonade stand. So, today Murphy came in and asked me if he could sell some toys they don't play with anymore. Of course, I said no. A while later I went out to get the mail. And I found Murphy and his friend selling leaves, and those flower-grass things you see sticking up from the upside down recycle bin.

They were also drawing pictures on a pad of paper - and selling their drawings. Here's the sign...

All you really need to know is the beginning - Drawings are $1. PS - if you don't have a dollar, you can pay .25 or draw your own. Ahhh, they are funny kids. I asked them if they were distracting drivers as they drove down our street and they said they were, "entertaining" them. Nice. Of course I had to tell them that no one could read their sign while driving. And I had to tell them that no one would buy their leaves considering they were dead leaves and they were everywhere! After looking around, Murphy nodded in agreement.

I then told him that if he wanted to sell his artwork - he needed to take more time with his drawings. So, he went inside and got some supplies.

When I spent some time looking at this "display", which I think was very clever of them, he said, "Mommy, they are not everywhere." Which is true. This plant (whatever the heck it is called) is not in every yard.

I have to give them credit for their display.

Soon the whole family ended up at the end of our driveway.

I can't believe it, but they actually "made" $15.00! One mom drove by and purchased several drawings for $10. And then a neighbor purchased a few for $5. Honestly, I feel terrible! So, Murphy is going to take them some cookies tomorrow. Tom and I made pumpkin whoopie pies last night. And I have to say that they are pretty darn good. While I can appreciate their desire to make some money - I really don't want them out there asking for money, you know? So, I will feel better if I think that they got something for their money. And I think that's an important lesson for Murphy to learn, too.

And the evening ended on a positive note - Brandy had her baby girl tonight - a week after her due date! Brodie Myra was born at 6:56pm and weighed 8 pounds, 6 ounces. I told Harlie that Brandy had her baby and she smiled. Harlie's been swaddling her baby lately. I think she's practicing! I can't wait to take Harlie to meet Brodie. That's going to be fun!

That's it for now. More later!
Thanks!
~Christy

Cooper

2011-11-18T18:59:00.000-05:00

So, as I spoke in an earlier post about my worries, Cooper's preschool issues was on the list.

He just started in this preschool this year - so it's new to him. His birthday is September 26, and the cut off to be in the three-year old class is September 30, so he just barely made it. One of the main reasons why I moved him to this preschool is because they have a policy that the kids don't have to be potty trained until age 4. Great! No pressure. OF COURSE he'll be potty trained by 4. Right?

Anyway, in short, his teacher harped on two things since the beginning of school - 1) He's not potty trained (nor is he ready or willing) and 2) He's "high energy. REAL high energy."

Well, I didn't mind the first couple of times. But, come on. What am I supposed to do about those two things?

One complaint was that he wouldn't sit still for circle time. What I wanted to say is, "Well maybe you should spice up your circle time." But I didn't. I just said, "Well, we don't do circle time at home, so I don't know what to tell you. That's why he's in preschool." I told her I had already spoken with his pediatrician who told me - WAY too young to be diagnosed - and you just have to get through these years. He just turned 3, for crying out loud.

At our teacher/parent conference last week, I briefly explained that our life is... different. And that I need help teaching him what preschool teaches. That's why I signed him up for the 3-day program vs. the 2-day program. He needs the instruction. He needs the structure.

But by the next week's end, I couldn't take it anymore. Every day, I heard the same thing. It got to the point that I dreaded walking into that building. It was awful. And most days he would come home in the same pull up that he went to school in (they require pull ups vs. diapers) and it would be soaked! So, I know they weren't taking him to the potty consistently. And on Friday she told me that "He was real high energy in music today. REAL high energy. And he pooped today, which is fine, but he needs to tell us when he goes." Yeah, okay. "Hey, Cooper, did you hear her? You need to tell her when you go poop, okay? And while you're at it, go on ahead and tell me, too, okay? Great. I'm glad we had this talk."

For real?

This kid is so anti-potty that I don't know what to do. He asked for a small bag of M&Ms the other day and I told him he could have them if he just sat on the potty - just SAT on it. Nope. He said no and walked away from the M&Ms. And never asked for them again. Is that normal?

The bottom line is that he has no desire to use the potty. He cries when we make him sit on it. Do I keep on making him sit on a regular basis (like before bath, bed, etc.) or am I just making it worse by making him? Ugh. I absolutely hate potty training! And keep in mind that I am spent. It took two agonizing years to train Harlie. Granted, we confused her by her surgeries which required her to go back into diapers multiple times.

Anyway, I just decided that I couldn't take it anymore. And if I felt they way I did about walking into that building - how did he feel staying in it? So, I called the director and told her my concerns. And she found another classroom that he would fit into. One less high energy. The only negative was that it was a total different schedule of days. But, oh well, it's worth it if it's a better place for him. They let me bring him on Wednesday to try it out and see how he did before we made the switch. And he did great. And the teachers seem willing and able to handle him. So, we made the switch.

I want to make it clear that he's not a bad kid. Just like she told me in the parent/teacher conference a couple of weeks ago - he's very sweet and shares with his friends. She even described him as "kind." It kills me that we had to move him. But he doesn't seem phased in the least. His teachers said that he's comfortable in the class and they said that he acts just like a typical 3-year old.

So, I feel better. And hopefully he is happy. And hopefully things will stay that way.

Thanks!
~Christy

2011 McDonald's Half Marathon

2011-11-13T21:08:00.000-05:00

I am very happy to say that I had a GREAT time yesterday running the McDonald's Half Marathon! I know it was the right decision and it was the running boost I needed to remember how much I enjoy running.

Since we lost our point-and-shoot camera, I couldn't take any photos before the race. Bummer. Tom dropped a few of us off downtown and we met up with my running group in a building to stay warm before the race start. I think it was in the 30s. It was cold.

The half started at 7:30. And it didn't take long for us to warm up a little. While Tom was waiting to see us he watched some of the 8k runners. Here's a weird one for you...

Not sure what that's about.

We saw Tom between miles 1 and 2.

That's me with my arm up in the center.

Then again at mile 4.

Heather, me and Niki at mile 4.

The three of us ran the marathon last year and we trained together again this year. But, Niki ran the Marine Corps Marathon two weeks ago and Heather was battling an injury, too. So, that's how we all ended up running the half together.

Miles 6 and 7 are in Bryan Park. The three of us stayed together until then. I was feeling so great, that I went on ahead and picked up the pace and ran ahead. I couldn't believe how great I felt. It was awesome to be able to run and not have pain - other than just fatigue as the miles went by.

The next time I was supposed to see Tom was at mile 8. I looked for him, but didn't see him. He did not expect me to be running faster than usual. And he said it took longer to get there than he anticipated, and he thinks he missed me by just a few minutes.

Miles 7.5 to the finish is the same course as the marathon. And as I ran, I vividly remembered exactly how I was feeling running those miles last year. They were awful. And it felt great to be feeling strong again. And I had to wonder, what if... But it was only for a second. Brook Road is a particularly hard part of the marathon course and that's where you see some good signs. My favorite this year was "Worst Parade Ever." So funny!

I kept on looking at my pace and doing the calculation in my head to see if it was possible to beat my best time. I couldn't believe that I was running in the 8-minute per mile range. And maintaining it!
I knew it was going to be close. But, by mile 11 I knew there was no way I could make up 3 to 4 minutes.

As I was running the last mile, I started to run faster. And I couldn't believe I still had so much energy. I think my goal for now will be to work on my speed and learn how to figure out when to pick up the pace to time it so that I have nothing left after the race.

I didn't see Tom again until the very end. And he said he barely caught me. He had just asked a person if he could slide in beside him to get to the fence and then there I was...

Me at the finish - just up ahead.

All done.

My time was 2:01. My best half time is 1:58 done at this race in 2009. I had NO idea I could have gotten a PR (personal record). If only I had listened to Heather and Niki, who told me to run ahead earlier. Ugh! Just a few minutes would have made the difference. I definitely had it in me.

But, regardless of that, I had a great run and that was my ultimate goal. It restored my love of running. And I do think that the Half Marathon is a great distance. It allows you to dig deep and ask a lot of yourself, without putting you into complete agony.

Murphy and me.

Me, Tom and Murphy

Natalie, Heather and me

John, Katy, Heather, me and Natalie

Heather and me

Oh, as I was coming through the food path after finishing, I saw a girl who looked distraught. I went up to her and asked her if she needed a hug and she started crying and through tears said, "Yes." Then she looked at me and said (while crying), "I did it!" And all I could say was, "Congratulations!" I have to say, she made me cry, too. You just never know what battles people are fighting.

After we were done, we went and grabbed a few recovery beers down the street. Then Heather and I walked back a few miles to cheer for our marathon-running friends. They all did great - I think every single one of them beat their times from last year. Well, one was a first timer - and she did great, too. Congratulations, Katherine! When they arrived at the restaurant, they told Tom that they missed his support along the course this year. It made me sad for them. He really was awesome last year traveling to so many places along the course to cheer us on.

That night some of us met for dinner. Good times.

Anna, me, Heather, Allison and Katherine

I see fun running in my future. Running the Half was perfect. It allowed me to have a great run, which was exactly what I needed. And I'm not too broken down that I can't do anything for weeks. Perfect! Now I can focus on my next goal... getting a PR at the Shamrock Half in March.

Congratulations to all the runners who ran this weekend! And thanks to all the supporters who cheered us on along the way!

Thanks!
~Christy

Worries...

2011-11-11T18:25:00.000-05:00

I don't know where to start. So many things are stressing me out lately. Maybe if I list them out, it will help me organize my thoughts and worries.

1. Harlie's IEP (individual education plan) changes (which we are currently working on).
2. Harlie's medical issues at school.
3. Cooper's preschool issues.
4. Nursing schedules.
5. Jaw surgery for Harlie - working on second opinions.

There's more, but those are the biggest right now.

I'll start with Item #2. Harlie's medical issues at school.

Did I tell you that we found a new nurse? I can't remember. Anyway, Terri's been with us for 2 weeks now (which I think is 6 days of working so far). So, yesterday (Thursday) I told Terri to take Harlie's cap to school and put it on her for an hour at a time to see how she does.

A cap is a piece of plastic that goes over the trach, and completely stops any air from being able to go in or out, forcing her to breathe through her mouth and nose. We put it on her Wednesday after school and she did great! It is much harder to inhale for her than to exhale, so that's the real test. Anyway, so following my instructions, she waited till Harlie got settled in, and went to put it on her. Harlie's interpreter saw what she was doing, and told Terri she could not put it on her because she needed to have her PMV (or speaking valve) on to talk. Terri, being new and not wanting to rock the boat, didn't want to argue with her, so she put the cap away, and put her PMV back on Harlie.

To give you a little education - the trach is located below your vocal cords. Your vocal cords work by air passing through, causing a vibration. Air passes through them when you breathe. But, since the trach is below the vocal cords, air doesn't get a chance to travel through them. So, no sound can be made.

The PMV is a one-way valve that allows air IN through the trach but not OUT. That forces the air to exit via the mouth and nose, which means air now can travel through the vocal cords, thus sound can be made. Which is also why the PMV is called a speaking valve. It is called a PMV (Passy Muir Valve) for the people who invented it.

Now, put a cap on the trach and ALL the air travels through the mouth and nose (just like a normal person), which means air travels through the vocal cords, and sound can be made.

So, as you can now see, the interpreter telling Harlie's nurse to not put the cap on was completely WRONG. She can speak with either on. But there are more important issues here...

1. There is not another person in that entire school that knows what Harlie needs medically. And I realize that there is no way that her interpreter should know all that stuff. Which means she has NO business telling Harlie's nurse anything when it comes to her medical care. Period.

2. Several staff members have already questioned her nurses on several different things. And I don't mean, "Oh, so why do you have to do that?" I mean, "What are you doing and do you have to do it now?" I can't tell you how bad it could be if Harlie's nurses had to consider the staff member's reactions every time she had to do something with Harlie. That is a very dangerous road to go down - it's something simple today, something life threatening later. And I just cannot allow it. We (her nurses and I) are very respectful when we have to enter the classroom. But that respect needs to go both ways. And let me just tell you - none of us want to be there. I wish we weren't needed.

3. If her nurses don't feel comfortable there - they will quit. And I will be pissed. We need our nurses. And I know they get paid squat. I want them to like this job. I want them to be happy. And if they feel like every time they have to do something with Harlie that they are making someone mad or uncomfortable, they won't want to do it at all. Not a good situation at all.

So, I sent an e-mail about this last night. And for some reason it didn't go through. So, I had to send it again this afternoon. Hopefully we can reach an agreement that we all just need to get along and work together as a team. After all, we all want the same thing - for Harlie to be able to learn and be safe at the same time.

On the same medical issues subject.... I received a call today from a nurse with the school system. She is a registered nurse (RN) and wanted me to know that they wanted Harlie's teacher to know how to suction Harlie, should there ever be an emergency and Harlie's nurse was unable for whatever reason (she was in the bathroom, which is down the hall, for example). BUT, she said that since her teacher is not an RN she was not allowed to suction past the opening of the trach. Which basically means she's not allowed to suction at all. So, the whole training thing is pointless.

Suctioning means you're using a catheter and inserting it in the trach tube (cannula) to suction out mucus from the cannula which is about 6mm long. So, if Harlie has a mucus plug (a sticky ball of mucus that gets stuck in the cannula) and Harlie is unable to cough it up to the opening of the trach, she is not allowed to insert the catheter deep enough to suck up the mucus plug. So, should Harlie not be able to breathe because of this plug, she won't be able to do anything to help her.

And this, my friends, is County policy.

So, I told this nurse that this policy is the same as telling a mother that if their child chokes on a hot dog at lunch, they will only be able to do the Heimlich Maneuver halfway. What about CPR? Only halfway, too?

What the hell kind of policy is that?!?!?

So, she says, "well in a real emergency, we would do whatever we had to do." Really? I told her I was hardly comforted by that, since the policy covers their ass from having to do anything. Well, okay, I didn't say "ass." But, I told her I was not comfortable with that policy. It makes NO sense!!! Who in the hell wrote that? Certainly not a physician or anyone who has ever worked with trachs before.

It's actually quite scary. But, clearly, not a concern for 99.9% of the moms of kids who go to school. Just me and a few others scattered about the entire county. Oh brother.

While I realize (and pray) that the scenario of Harlie's nurse being unable to suction, and Harlie being unable to breathe is slim to none, the fact that that policy exists is extremely bothersome to me. Clearly, I have to make some phone calls. Great. Add that to my list.

Which reminds me, Cooper and I were coming home from preschool the other day when he says, "Mommy, I want chicken nuggets and french fries." And I say, "But we don't have chicken nuggets and french fries." And he said, "Whaaaat?! Oh, great."

So, last night I was supposed to go down to the Expo, pick up my race packet and then head over to a friend's house with my running group and have dinner to carb load and have fun. But, I was so upset over what happened yesterday, and I knew I had to send out that e-mail stat, that I just couldn't change gears, and go out and have fun like I was totally fine. Because I wasn't. Too many issues to worry with that I just WISH I DIDN'T HAVE TO WORRY ABOUT!!!

And I can feel how tense I am. And it feels awful. Luckily, I got a massage gift certificate for my birthday. OH! I haven't been able to tell you about that yet! If you know that my birthday is in December, you might be confused. I'll clear that up soon. I hope.

So, the Half Marathon is tomorrow. And I just haven't had the energy or the time to be able to get excited. Which stinks. I hate to be a complainer - but the past 9 weeks have been really difficult and straining. I always feel like I'm on the verge of tears. And I really am pleased with how well Harlie's doing. But I get constant reminders of all she and we have lost and how difficult things are going to be for many more years. And I just wish I could be a regular mom sometimes. One who doesn't have to worry about suctioning or stupid policies that would endanger my daughter's life.

I was feeling particularly down this afternoon as I was racing to the Expo to get my packet. I was late (as usual, despite all my efforts) and my friend Heather called and said she already picked up my packet - and switched my bib from the full marathon to the half for me. Awesome.

I don't know what I'd do without my friends. Especially Heather. When I feel like crap, she makes me laugh. And then I feel like myself again. If only for a brief moment.

So, from this point forward, I am going to relax, and think about running with my friends - Heather, Niki and Natalie - and having fun. I will run in this beautiful fall weather and I will soak in the cheering of the crowd. And I will have fun. And I will not worry about my time, because we'll probably gab the whole race.

And then later on that night we'll go to dinner with my running group. I hope. Because I just got a call from my nurse and she cancelled on me. So, now I hope I can talk one of my other nurses into coming. UGH!!!!!

Seriously, I'm going to have a GREAT time tomorrow. I'll tell you all about it later.

Thanks for reading. And thanks for always being here for me when I need to talk.
~Christy xo

Harlie's "talking"

2011-11-09T23:07:00.000-05:00

This has to be really quick... but I want to tell you how great Harlie has been doing lately. She is really trying to talk! She repeats everything you say. She even sings the songs to shows on TV! Her two favorites right now seem to be the song from Cat in the Hat and Wild Kratts. She mostly hums, but you can totally tell what she's singing, so that counts. Although with the Cat in the Hat song, she can definitely say "go, go, go" clear as a bell.

I really can't believe how hard she's trying. And this growth seems to have come so fast. Who knows where we'll be by summer!!! I know it's not going to be all smooth sailing. Her mouth does not make it easy for her, that's for sure. So far, she really can't seem to be able to lift her tongue to the roof of her mouth or to her top teeth. And I think that will make it very difficult for others to understand her.

Harlie had a fabulous speech therapy session with her private ST last week. And my homework this week was to think of some specific words that we want her to learn how to say. Last week they worked on getting Harlie to touch her lips together. It really amazes me how many things that normally we don't have to work for - but she has to work hard for every little thing. Like touching her lips. Or raising her tongue. Or breathing through her mouth and nose.

And she never complains.

Tomorrow she has physical and speech therapies after school. I'm anxious to see what she does. Last week in PT she worked with the Wii Fit. That was fun. I wish I could work in more therapy for her. Because she actually has fun while working. And they are so beneficial!

Last year her PT did an evaluation to see where she is physically. It's very similar to being measured for the growth chart - like your child is in the 50th percentile for weight and 75th for height. Physically, Harlie is in the 2nd percentile. And it is extremely obvious at school. And keep in mind that evaluation was done last year - before her spinal fusion surgery! So, I'm glad she was cleared by her surgeon to go back to PT. She has a lot of catching up to do.

We had parent/teacher conferences on Tuesday. Overall, I think they went pretty well.

Cooper is very active and has a hard time sitting and paying attention during circle time. I wonder where he gets that from? Tom. But, she said that he plays really well with his friends and shares easily and is very kind. Me. Socially, he is doing great. I guess he'll eventually learn to sit still. Right? Now if we could only get him potty trained. He has NO interest in it whatsoever. And if we manage to get him to sit on the potty, he will only sit for a split second and is done. So, sitting still is a problem across the board.

Murphy is doing great in school. And I can't tell you how glad I am for that! What a difference from last year's experience!!! His teacher says he's doing great in all areas (except for when he forgets to take his meds, which is really quite obvious). At least we know that the meds are still the right decision for him.

Harlie's conference was longer, of course. And on paper, it doesn't look good. But, that's the way she rolls anyway, I suppose. She has always looked worse on paper. And those that have seen her medical records before meeting her in person always comment on how shocked they are that she's doing so great. And actually, if it happens the other way around, people are equally shocked to hear all she's been through. So, for right now, I'm not letting it bother me.

So much of her challenge right now is language. I'll give you some examples. The other day Cooper said, "Mommy, that is really big!" And I thought to myself, does Harlie know what "really" means? And how do you teach that word? Because no one taught it to Cooper. See how much learning she missed by not hearing well for the first three years of her life?

But, then the other night, I was brushing Harlie's hair and teeth and getting her ready for bed when she said and signed "purple." I said, yes, I see purple. And then she said and pointed to her shirt, "Right here" and I could totally understand her! And it occurred to me that we haven't taught her the words "right here" - on purpose. How awesome is that???

So, when they are trying to teach her class that monkey starts with M - does Harlie understand "starts with?" I asked her teachers that question, and they said they don't know. That's what makes learning language in her situation so incredibly difficult.

I haven't been able to blog about the details - but I have been really stressed about Harlie's education this year. It's been weighing on me more than I expected. But, I have to say that I am now more hopeful than I have been since school started. Hearing her "talking" has been incredibly wonderful. On so many levels!

Okay, this has been way longer than I intended. Ugh! And I still have so much more to tell you!

More later!
~Christy

Richmond Marathon

2011-11-07T22:30:00.000-05:00

The Richmond Suntrust Marathon is Saturday. And I will not be running this year, as originally planned (insert frowny-face here). My stupid IT band has struck again (the same injury that I had during the marathon last year). Since I already ran 26.2 miles with an injured ITB, which affected my time and my ability to exercise after the marathon for several months, it seems silly to do it all over again.

Last year was different. For one, it was my first marathon and come hell or high water, I was running that thing! For another, I thought my ITB injury was "cured" when I started the marathon. Which, turned out to not be the case. And quite frankly, that was pretty naive of me to even think that. Ahhh, inexperience!

However, I can no longer use any of those excuses! For one, I have experience. For another, I know that my ITB will hurt - there is no way I can log 26.2 miles on this injury and come away unscathed. Period. And I'm unwilling to forfeit the next several months of running for this marathon.

I've been thinking this over for several weeks. And I've gone back and forth. I want to run it. But I just don't think that would be very smart. I am very sad that I will miss the experience this year. I was so close to the starting line! The feeling of completing a marathon was like no other. It was an accomplishment I never thought I would achieve. Heck, I'm approaching 40 years old, I have three small-ish children, one of which has special needs. Finishing that marathon, I felt like a super hero!!! Who the heck wouldn't want to feel that again?

But, I know the smart thing to do is to run the Half Marathon instead. I'm not happy about it. And I must admit, sometimes I think to myself, "God, considering what you chose for me - why couldn't you just make me a natural runner? Would that have been so hard?"

I think Tom's pretty happy about my decision. Training for a marathon is a family commitment - it affects us all. The worst isn't even the time it takes to run. It's the time it takes to recover. That's where I feel the biggest challenge. When I come home from running, I have to hurry up and get busy with my other duties. Normal running/exercising is usually energy-producing. Marathon training (in my experience) is energy-depleting.

And this fall especially, I need every ounce of energy I can get. Harlie starting kindergarten has really taken a lot out of me. Between the stress of how she's doing, and is she receiving the service she needs and is supposed to be getting, and finding a nurse... I have very little time, energy (and even less motivation) to go out and run a long run.

Yes, it was a wonderfully, awesome experience to run 26.2 miles. And I hope to feel it again one day. But, for now my goals have to shift a bit. I want to work on some other things - not just distance running. Goals that are less time consuming will be good for me - much more realistic and less stressful. Maybe something that doesn't require my body to get a lot of rest. Because I have to stay up late to get some quiet time - and to blog.

Okay, I just went and found my Marathon Recap from last year so I could link it in the first paragraph of this post and now I'm even sadder that I'm not running it! It's so comical to me that even though I just read all about how incredibly painful it was - I still want to do it! Runners aren't right.

But I am not going to let my emotions get the best of me! When I signed up for the marathon this year - I had two goals. One - to beat my time from last year. And two - to run it healthy and without injury. As awesome as it was to run it last year, I really don't want a repeat of that exact performance. And then there's that voice inside that keeps saying, "What if..."

But I'm not. Period. I'm going to run the Half. And as of right now, I say no marathon training next year. So, we'll see...

I did go back and read all the awesome comments I got on my Marathon Recap post. Loved every one. Thank you very much for posting them. And the next crummy day I have, I'll come back and read them again to remind myself that I'm not so bad. Thank you for that!!!

Hopefully I'll have a good Half Recap for you. Now, to get excited about 13.1 miles! WooHoo!!!

Thanks!
~Christy

Halloween 2011

2011-11-01T17:17:00.000-04:00

I've come to the conclusion that I am no longer a fan of Halloween. Being the candy lover that I am - this used to be one of my all-time favorite holidays. But no more. Now it is just hard work. And quite frankly, it highlights an area of weakness for me - facilitating fun for my kids. Ever since I had to put on my medical hat - I lost some fun in my personality. Having fun takes energy. And I just don't have a lot of energy lately.

So, a few weeks ago, trying to be ahead of the curve a bit, we took the kids out to find some costumes. I wish we could make them - like what we did when I was a kid - but talk about work! So, that's out of the question. Of course Cooper didn't seem to understand what he was trying to pick out and with every suggestion his answer was "no." We decided we would recycle one of Murphy's costumes. For Harlie, I narrowed her selection down to Jessie (from Toy Story), a bumble bee and a cat. I wanted her to be a witch this year, but her school had some character parade on Monday, and they couldn't dress up as a witch (ugh). I wasn't going to buy two costumes. So, so much for the witch idea. Anyway, she choose Jessie. Murphy was easy. He's known for a while he wanted to be "Snake Eyes" (from GI Joe maybe?). Bought the costumes, and marked that off my "to do" list. Doing great and feeling like a good mom!

Then on Saturday, Harlie brought me her costume and wanted to put it on. And that's when I discovered that it was WAY too small!!! So, of course I take it back and there's no more Jessie costumes. I ended up buying the bumble bee and the cat costumes and brought them home for her to choose from. She choose the bumble bee. Great. Crisis averted.

So on Monday, I took Harlie to school and stayed with her all day because.... we found a new nurse! Can you believe it? Terri's first day was Monday, so I worked with her all day to orient her (they won't pay for two nurses at the same time so one can orient the other - which I think is terrible). Anyway, spent all day at school. Then as soon as school was out we went straight to Harlie's 5-year well check appointment. Then I had to run an errand for Halloween (Harlie needed black pants and I had to return the cat costume). Luckily Jennifer's daughter just outgrew a pair of black pants, so I stopped at her house to pick them up. So I ended up still being in the craziness of last minute shopping that I was trying to avoid! Never fails... Then I got home at 4:30 and realized I had NOTHING planned for dinner.

Murphy dressed himself (he's such a big help) and now I had to get everyone fed, dressed, pictures taken, etc. and hit the streets - all with a smile and in the name of FUN!

Whatever.

So, Tom got home and said there was a frozen pizza in the freezer. Great! I went and got that, preheated the oven, took the pizza out of the wrapper and put it directly on the oven grates, as directed. I even set the timer! Ahhh, I'm a good mom after all, I thought.

Pizza was done, I pulled it out and cut it. But, it didn't cut very well. I couldn't figure out why the knife wasn't going through. So as I cut I spread the pizza apart with the knife and that's when I saw the cardboard!!! Damnit! I didn't realize it had a cardboard bottom! So, the crust didn't cook very well at all. It was all mushy. And dinner was ruined!

And that's when I feel completely inadequate as a mom!!! My mind is so focused on Harlie's education (or lack thereof), nursing, scheduling upcoming surgeries, trying to find a surgeon for a 3rd opnion, etc. that I just don't have it in me to do the simple things. Like cook or have fun.

Tom and I ate the pizza anyway because 1 - we were hungry, and 2 - we didn't have any other choice. The boys got butter noodles and Harlie got a can of formula. It's a total Norman Rockwell kinda scene over here.

I did manage to buy a blond and pink wig for myself to wear, so I kept on focusing on that so I would look like a mom who knows how to have fun.

Amazingly, Harlie actually wanted to put on her costume, so I got her and Cooper dressed, put all the kids together and got a few photos. I would show you, however, we can't find our freaking camera. Nice. Luckily my niece, Maggie, came over. So, she took some photos with her phone. I'll have to get her to e-mail them to me.

I made a drink for myself, loaded the stroller up and we headed on out. I was so glad Maggie was with us! She made it way more fun and walked with Harlie up the driveways and to the doors.

And you should have seen Harlie. She wanted to be just like all the other kids - holding out her bag, letting them put candy in (or picking it out herself) and saying and/or signing "thank you." And for some reason, it broke my heart. I've just been feeling pretty sad lately, and to see her working so hard for something she was never going to eat... well, something about that just made me even more sad. She's just so darn sweet sometimes, it kills me.

All those stairs, and hilly driveways... all while wearing her PMV. That is HARD work for her!!!

After a few houses she got tired, so I put her in the stroller and went as far as I could go (up a driveway for example) before letting her out and she said, "Halloween" just as clear as a bell. Maggie and I both turned our heads to her and said, "Did you just say Halloween?" So, I know I'm not crazy. Maggie heard her, too.

She wants to talk so bad - yet she hasn't received speech therapy at school in over a month!!! But don't get me started...

The night ended up being good. I can't walk with Murphy anymore because he is way too fast for Harlie. So, he went with our neighbors. Cooper walked the whole time. He walked with me and Harlie on our street. And then when we passed our house, he wanted to stay with Tom and give out candy. After I got back with Harlie a little later, Tom took the boys out again for another trip.

And somehow we misplaced the camera. I've been having photo issues lately. I'm either missing the pictures or the camera. We can't win.

So, here's a picture I took a few weeks ago...

And here are some more...

Kids. They sure are funny.

Happy Halloween! Whatever.
~Christy

Bass Pro Shops

2011-10-30T16:44:00.000-04:00

Yesterday it was rainy and miserable. So, the kids were stuck inside. And for some reason, Tom and I couldn't get it together to do anything. I was supposed to run 12 miles - but had NO interest in running in the cold rain. And I certainly had no interest in doing them on the treadmill at the gym. So, since yesterday was kinda a bust, we decided to get the kids out today for a bit. I ran a quick 5 miles on the treadmill (it was really cold this morning!). I was nice and warm running a measly 5 miles while many of my friends were running 26.2 miles in the freezing temps in DC for the Marine Corps Marathon. Yay them! Then we headed out.

Tom thought of Bass Pro Shops. It's huge - and there's a big fish tank, and a little "creek" with fish in it. There's stairs and a big stuffed bear and all kinds of things to look at. So, we thought we'd get them out walking a bit. We didn't take in the stroller - or the suction machine! WooHoo!!! Not carrying that thing around is a HUGE deal!!! It was in the car, close by, if we needed it.

I was the dork who took some pictures. Oh well, they will never see me again, right?

The waterfall goes into the fish tank.

I don't know what got into Harlie today, but she was more photogenic than usual.

One of the best photos of Harlie, ever!

The left side of her face has some nerve damage/paralysis from her Goldenhar Syndrome. But, I wonder if she's getting stronger. It really looks pretty good in these photos!

She's on a roll!

And I know I shouldn't make fun. But, I can't help myself!!! I don't care if you put some cute little bows and eyelet lace on it - it's still not going to be girly or cute.

Period.

And even though that whole zipper thing might be the latest fad...

I wouldn't carry that if you paid me. Okay, fine. I might for a million dollars. But that's the lowest I could go. I mean, a million dollars could buy a lot of speech therapy!

Okay, must take a break now. I have to go make some nachos and watch a bit of the Steelers vs. Patriots game. Go Steelers!

Thanks!
~Christy

Harlie's 5th Birthday Party

2011-10-30T16:14:00.001-04:00

Just trying to get caught up... yes, her birthday was over a month ago.

Here are some photos from Harlie's 5th birthday party. We had it at The Little Gym because we could tailor it more to what Harlie was allowed to do physically, since her spinal fusion. We kinda didn't follow the rules, exactly, and let her hang from her arms a bit. I wanted to keep the party kinda small. And I wanted to promote some relationship building with her classmates. So, we invited all the girls from her class (most were able to come) and some friends that are about her age. Of course, the boys are Murphy and Cooper.

Can you believe how much shorter she is than everyone?

Aside from Peyton (in the yellow dress) and Cooper and Murphy, of course, all those kids are in kindergarten. And Peyton is three and she's taller than Harlie. Heck, Cooper is only two inches shorter than her. He is totally going to pass her. And that's going to be really weird. At the pool this summer I was asked if Harlie and Cooper were twins. Oh my sweet little girl.

This is the point when we just couldn't tell her no.

But look how happy she is! How could we deny her that on her own birthday?

Monkey see, monkey do...

Harlie signing "bubbles"...

Harlie's "cake."

This was the first time she's ever blown out her own candles!!! And I wasn't expecting it, so I didn't capture it on film. Darn it! She really did great! And those of us there that understood what just happened were like, "YAY HARLIE!!!" And I'm sure the kids were like, "What's the big deal? She just blew out her candles." Ahhh, it's the little things.

That PMV (the purple thing on her trach - it allows her to inhale through the trach, but then closes, which forces the air out of her mouth and nose. This allows air to go through the vocal chords, which is how you produce sound) has been AMAZING! We have been working so hard to get her to tolerate it for years and years. And it is finally paying off! She's actually quite loud now. And it allowed her to blow out her candles! And it makes her sneezes sound like the cutest thing you've ever heard! The first time I heard her sneeze while wearing it - I cried. It was the sweetest sound!

And speaking of her PMV, I heard from a representative from their company recently and she wants me to submit a little write up about Harlie and her PMV to be included under their Patient Stories section. YAY! I'm so honored! So, she sent Harlie a little package this week and this is what Harlie did for the first time (thanks to the PMV)....

Thank you so much, Julie! I am so grateful for a product like this! Yet I have a love/hate relationship with the trach. Weird.

Well, hopefully I'll have more posts soon...

Thanks!
~Christy

Leyda

2011-10-23T22:14:00.000-04:00

I have a lot to tell you about, but for tonight, I want to ask you to keep Beverley and Jim and their family in your thoughts and prayers as they lost their sweet Leyda yesterday (Saturday). She was six years old.

My heart aches for them. Here is what Beverley wrote that day:

Our bodies now disappoint us, but when they are raised, they will be full of glory. They are weak now, but when they are raised, they will be full of power.
~1 Corinthians 15:43
Leyda is now with Jesus, full of glory and full of power! Her heart is healed, her body is healed.

Thank you for keeping them in your thoughts,
~Christy

Antibiotics... and then some.

2011-10-19T00:03:00.000-04:00

I'm feeling overwhelmed tonight. There are so many balls in the air concerning Harlie right now. She has been a full-time job requiring over-time lately! And I can totally see that other important things in life are suffering because of it. I am really hoping I can get some things put to bed soon, so all can balance out again (as if!).

First of all, we can't seem to get her healthy and off antibiotics!

During the last two weeks of August, she started to have some issues. I can't even remember now (it was so long ago, after all!) but her pediatrician put her on Amoxicillin for 10 days. Just a few days later, all her symptoms reappeared. So, back on it she went for 14 days.

Then a week or so after that course was done, she started to get sick again. We were starting to wonder if she had a sinus infection. But, she saw her local ENT that week and she said she appeared to be fine. Although that was the day that she pulled that blood clot out of her ear canal.

A week later, she had an ear infection. And then went on her third round of antibiotics. But this time, he put her on Augmentin.

The day after her last dose of Augmentin, she saw the ENT in Norfolk, who said she had fluid in her ear and to watch it closely.

Two days later, she had a fever and was looking like crap. Again. So, back to the doc, and she had another ear infection - this time she had a blister in there. Another round of antibiotics, this time Omnicef.

Two days after that, she started showing signs of a UTI (urinary tract infection). Back to the doc. The dip was clean (which was very surprising) but they sent it away for culture just to make sure. And he put her on another antibiotic (Bactrim) for that since Omnicef doesn't cover UTIs. And then I went to Whole Foods and got her a probiotic just in case all the antibiotics do damage in other areas.

Whew!

The good news is that she had a fever (okay, several over a few days). She hasn't had a fever in years (even when her jaw or spine was infected post op). And that was making me quite nervous. So, I'm relieved that things seem to be working the way they are supposed to in that department.

Hopefully, this is it for her and antibiotics. And hopefully she can get back to school again. She hasn't gone since last Thursday.

She had an appointment with her pulmonologist today. We haven't seen him in over a year. She seems to be breathing more rapidly and more shallow lately. And I had some other things I wanted to discuss with them. Nutritionally she's doing well. He said that her weight for height number is great - it's actually higher than they would expect given her history (she's in the 25th percentile). Her height is still low - she's in the 3rd percentile for stature. Not surprising, really, considering she's two inches taller than Cooper. It won't be long before he's bigger than she is. Won't that be confusing!

One of my concerns was the sand table in Harlie's class. The last time I was there I noticed that there is a huge fine sand dust that floats around the room when kids are playing in the sand. It totally made me a nervous wreck. She has no filter - thus, no protection from the sand getting into her lungs. I asked him if I was crazy (hoping I was considering she LOVES the sand table) but he said no. The sand dust has to go. She simply cannot be around it. It would be different if she was only around it once a month or something. But, five days a week? No way.

I just hope that the school switches the sand out for another alternative. Anyone have any suggestions? I know that dried beans are a substitute. But, I'm not sure about bugs. I need to go and look for a small smooth pebble-like gravel material to see if that might be an option. If you know of any other options - please let me know!

I'm also working on getting a second opinion on her jaw. But that is way too long of a story to tell you about now.

Oh, and our pharmacy is having trouble getting two of her monthly meds. So, I guess I need to work on that, too.

Well, I'm falling asleep while writing this. I don't even want to proof it. So, forgive any errors please!
Thanks!
Christy

2011-10-16T22:00:00.000-04:00

Tonight I want to tell you about Leyda...

She was born with Hypoplastic Left Heart Syndrome (her left ventricle was too small to pump the blood to her body) and she's had three open heart surgeries and has had two strokes. She's six years old and her heart is failing.

I just can't stop thinking about her and her Mom and Dad (Beverley and Jim). My heart aches for them. They are amazing parents who have done a wonderful job of making this little girl feel happy and loved. I can only imagine how painful this must be for them.

Ever since Harlie's birth, my eyes have been opened to a new world. I've met so many wonderful people. And too many of them have lost their children. I feel that it's my duty to never take my children for granted. I owe it to them. And I think of them when I'm having a hard time with my own kids. Or when I'm feeling particularly sad about Harlie and her struggles. I remember them. And I am grateful.

On Saturday I ran 12 miles and felt that old, horrible, familiar IT band pain in my right knee. (Not sure how that's going to affect my marathon aspirations.) When I got home, I was tired and sore. I needed to eat, ice my knee and take a shower. But, Harlie went into the playroom and got down the Chutes and Ladders game and brought it into the kitchen. She's not been feeling well the last few days (another ear infection) so it was good to see her want to play. But, I had things to do, and I didn't want to play.

Then I remembered Leyda. And Beverley and Jim. So, I sat down and played Chutes and Ladders with Harlie.

Things could have been different for Harlie. Things could have been worse. And things can always get worse. I will always remember that. And so I am grateful. And being grateful is a good thing.

Please keep Leyda, Beverley and Jim in your thoughts and prayers.

Thank you,
Christy

Plastic Surgery Appointment

2011-10-13T00:26:00.000-04:00

Tuesday proved to be a crazy day. I need to back up slightly first.

Sometime in the last few days Murphy stepped on a lego (a constant hazard around here) and cut the bottom of his foot. Tom washed it and put a bandaid on it, and I forgot all about it. Until Monday night, when Murphy started complaining about it (or Tom saw some drainage on his sock, or something. I know, ewwww, right?) So, we took a look and said, "Hello, Infection!" There was pus (such a yucky word), his foot was swollen and there was a red line creeping up his foot starting at the site. Ugh. Of course, he didn't have school on Monday and I took them to the mall to play - but did he say anything then - like when the doctor's office was open? No.

So we are supposed to leave the house at 9am the next morning, and I have no idea when we'll be back. I didn't think he could go another whole day without antibiotics. So, as soon as the office opened (8:30) Tuesday morning, I called his doc's office and they said to bring him in asap and they would take him and get him back out the door to try to help accommodate our schedule. They are so awesome.

Tom left and went to get Murphy from school while I stayed home to feed Harlie and pack the car. Despite our major efforts, by the time we put gas in the car and dropped the prescription off at the pharmacy, it was 9:30 by the time we were on the road.

More than an hour later (we were in Newport News by then) I switched out a movie for Harlie. And in doing so, I noticed that the floor looked pretty bare. Then I asked, "Where's Harlie's suction machine?"

Holy Crap.

WE LEFT HARLIE'S SUCTION MACHINE AT HOME!!!!

As the magnitude of this error sunk in, Tom started being funny (our go-to plan for very stressful times). And then I laughed and cried at the same time. Oh, so many emotions! We thought about our last thoughts as we were leaving the house. Tom said, "Don't forget your Diet Coke!" Thank God we remembered that! Whew!

And then I remembered plugging it in to charge because somehow we forgot to do that the night before. So, I plugged it in until it was time to go. While I was loading the car I thought about putting it in the car then, but then thought, "no, what if we need it before we get in the car?" I didn't want it to be in the driveway while I was in the house because that was too far.

That freaking suction machine has been at Harlie's side every minute of her life (practically) since the day she first left the hospital.

What if she had a plug? Well, she's certainly had them - but they've not been emergent so far. But I know our luck. The day we don't have the suction machine IS the day we're going to need it. Like really need it. And since it helps keep her airway open - the thought that I don't have it around is not a good one.

We were WAY too far to turn around. And she has a much stronger cough now. And we didn't have a choice. We were just going to have to be without it and hope for the best. I thought if I make it to old age, it'll be a miracle.

So, we get to the hospital and see an ENT first. He said that Harlie's ear is full of fluid, her eardrum is retracted (meaning pressure!) and of course, it's all scarred (nothing new there). Dang it! But, it's not infected. Of course she just had her last dose of antibiotics the night before. So, who knows what will happen now. So, to her - it sounds like she's underwater. Which would explain why we haven't seen an improvement since the blood clot came out a few weeks ago. Which reminds me, I don't think I ever told you about that. Ugh.

Okay - real quick... you might remember in this post I talked about how the pediatrician looked in Harlie's ear and then it started bleeding? It bled off and on for several days. Then a few days later she started pointing to her ear and signing "broken" which she does when the hearing aid battery has died. But, the aid was working fine. So, clearly something was amiss. I called her local ENT and they worked us in. The doc pulled out a HUGE blood clot that was blocking over 80% of her canal. No wonder she couldn't hear! And that's been in there everyday since before school started!

We thought for sure we'd see a turnaround in her listening and participation at school. But, after a few days, it seemed to get even worse! So, the fluid that's in there now would explain that. The ENT that we just saw yesterday said that if it doesn't clear up in two weeks, we should get her another tube. Ugh. It looks like I should really look into a bone anchored hearing aid (BAHA) for her. At least that would give us some back up that wouldn't be affected by fluid or blood, or whatever.

After we saw the ENT, her plastic surgeon came in. We spent more time with him yesterday than we ever have. He looked at her CT scan. I need to figure out how to get a photo of some of the images so I can show you. Her jaw is crazy. Unfortunately, my Mac computer won't read the disc. I'll see if Tom can work on it for me.

Anyway, he talked about what he needed to do. Her ramus is in a horizontal position instead of vertical, like in this picture:

And she's missing the condyle on her right. And I think there's something wrong with the coronoid process, but don't quote me on that.

It's really hard to picture the ramus in a horizontal position. But, her jaw looks nothing like that picture. She has no angle at all, really. But he said he could add one in when she's older. Oh goody, more surgeries! And her bottom teeth are way off from her top teeth. Although you don't need a CT scan to see that! And clearly, the two sides of her jaw are completely different. Her last reconstruction was done in December 2009. The bone graft on the left side took just fine. But the one on the right got infected and had to be removed. This left her jaw even more asymmetrical than before.

Basically, he's going to have to cut up her jaw into several pieces and then put them back together again in a better way. If you've ever had any kind of dental work done at all - I'm sure you can only imagine the pain when recovering from this kind of surgery. It is truly horrifying.

The good news is that he thinks she has more bone to work with this time around. I guess the bone has gotten thicker as she's gotten older. So, hopefully that will help a lot. And he feels confident he can make the changes necessary for this surgery to be successful. But, we've thought that each time and here we are.

The bad news is that plastic surgeons (especially reconstructive for anatomy defects) are like artists. Each patient is completely different. The results vary widely and cannot always be predicted. And since her structure is abnormal to begin with, it makes it almost impossible to know what to expect. All these are my words by the way - not his. It's just my take on it after all these years.

And he said that with Goldenhar Syndrome, not only is the bony structure affected - but so is the soft tissue. And if the soft tissue won't stretch or accommodate the changes made to the bony structure, then the results might not be favorable. The soft tissue can actually force the bone to retract or move by the constant pressure. Which is why it takes a year to know if the surgery was successful. The agony!

He said that he could do the surgery whenever we are comfortable.

After talking it through, we decided that we would shoot for May, 2012. Since her jaw has to be wired shut for 9 weeks, if we waited till after school let out for the summer, we would run a huge risk of her not being able to start school again in the fall. Since she's had 2 out of 3 bone grafts get infected and require additional hospital time, we would rather be safe than sorry. And Tom was thinking that it would be better for her to miss the last month of her first time through kindergarten, than miss her first month of real kindergarten.

So, if we are lucky, and all goes the way we want it to, we would be hoping for decannulation (getting the trach out) sometime in the summer of 2013. So, she would be 7 and starting the first grade (assuming she does kindergarten twice, and is able to progress to first grade).

It's really overwhelming to think she'll be almost 7 and still be trached. I had no idea it would be like this. And what if this surgery isn't successful? I can't even think about it.

Which brings me to my struggle with this whole mess. I was thinking that we should get some other opinions. I just thought that we owe it to Harlie and to ourselves to make sure that we are making the best decision on this. So, I spoke with her ENT in DC about it several months ago. He gave me the name of a surgeon in Jacksonville, Florida. I e-mailed him today. And he replied, and in his reply he "strongly recommended" that I reach out to another surgeon in Miami.

And his recommendation got me thinking that I could probably reach out to a dozen plastic surgeons and that I would still be in the same situation. How will I know who's the right one? So, thinking things through....

1. If I went to a different surgeon, they would be going into her jaw with no prior experience as to what worked or didn't work in the two previous surgeries.

2. I do believe that no matter who performs the surgery - the same issues are present (the question about the soft tissue, bone grafts, results, etc.).

3. I have to have a facility that has a cardiac anesthesiologist and can support her cardiac issues (or at least get her to DC if needed).

4. If we travel far away for surgery (like Miami or Boston) how do we do the follow up appointments? And what if she gets another infection like before? What if time is of the essence???

5. I've already seen two other plastic surgeons (in addition to her current one) and neither of them were candidates to perform surgery, in my opinion. Both of them only perform jaw distraction - not jaw reconstruction. Her current surgeon does both procedures. And it is very clear from her CT scan that jaw distraction is NOT an option for her. Period. Her jaw needs WAY more than just lengthening. It needs full reconstruction. That's just the way it is. And both of those surgeons were trying to tell me that distraction can be done in almost every case. Whatever. I just don't believe that. And to be fair, they had not seen her CT scan when they said that. But, the fact that they would say that without seeing her CT scan is concerning, if you ask me.

6. I am very comfortable with this surgeon. I think he's a great person, as well as a surgeon. But, there is a part of me that says we have ONE more shot to get this right. It HAS to work this time. But are more opinions going to help or confuse? I don't know. But I do know that the thought of something going wrong and having to travel great distances to see her surgeon is VERY SCARY (considering how awful our last experience was, which lead to this).

If this surgery is successful, our lives will change dramatically. Without the trach, Harlie could learn to speak at a much faster pace. Her voice would be stronger. And she would be able to make sound with a lot less effort - which would greatly speed up the process.

Eating could be a lot easier. I have to say that after seeing her CT scan - I have to wonder how much the alignment of her teeth affects her ability/desire to eat by mouth. Her bottom teeth fall to the right and are no where near lining up with her top teeth. So, as I sit here and make my jaw go to the right and then try to swallow, it's damn near impossible! Try it. I don't know how in the world she does it!!! And now I feel like a total horrible mother for making her!

And forget chewing!!! When is she going to be able to learn to chew??? I really don't see how chewing is going to be an option at all - until her teeth line up somewhat. And the thought of going more and more years with no chewing makes me want to barf. Can you imagine the impact of that socially? Not to mention YEARS and YEARS of more pureeing food for her!!! Oh brother. I have to stop thinking about that. For real.

So, I guess you could say I have a lot on my mind. As much as I want this surgery to happen, I dread it. The thought of her waking up afterwards and looking me with that look. The look that says, "What did you let them do to me???" I just have to hope that the next seven months will provide some growth in maturity and focus to allow us to try to talk to her about it so she'll know what's happening. Or at least know more than she usually does before a surgery.

It makes my heart hurt to know what lies ahead of her. Until then, we'll laugh as much as possible.

Oh, and just in case you were wondering, we did just fine without the suction machine. We didn't need to use it once. And what a difference it's absence made to our load when walking around the hospital! And all those times I take it into the grocery store, or Target or wherever? Maybe we can lighten our load a wee bit? I think if it's in the car and we can get to it quickly if needed, it would be fine to not carry it all the time.

Well, that's it. It's super late and this post is super long. As always, thanks for reading!
~Christy

Marathon Training and Non-Hearing Terms

2011-10-11T05:48:00.000-04:00

It's 4am and I can't sleep because I feel like crap. I have a cold. I like to consider myself more strong than weak, but colds kick my butt. I'm thinking it's worse when I'm training for a marathon. I'm tired from that already, so I don't have much left over to fight a sickness.

I felt a tinge of something Friday night. On Saturday morning I woke up, met the group, and ran 18 miles. Overall, I felt pretty good. The course was hillier than I would have liked (but aren't they all?). Then we went and got some breakfast. Then I came home and weeded and planted the flower bed around the mailbox. And that hurt. My legs were screaming by then.

That night we went for a walk around the neighborhood with the kids. I don't know why we don't do that more often. The kids love it and it wears them out. A win/win! Harlie even wanted to walk more than usual. We are trying to work on her walking endurance (we just started physical therapy again finally!). And when we got the kids to bed and I sat down, it (the cold) hit me.

I have no energy to do anything. And all I can think about is how much I'm not getting done or doing that I need to do. How in the world am I going to get miles in this week? Luckily, it's a recovery week, so we'll run only 12 miles on Saturday. So, really, of all times to get sick, this is the best time. This coming Saturday is 12 miles, the following is our longest before the marathon - 20 miles. Then two weeks of tapering miles. Then on November 12th, the marathon - all 26.2 miles of it. Kinda hard to think about, really.

So, I think this will be my last marathon for a while. I've already decided I'm not going to do it again next year. This week alone is a perfect example of why running a marathon is too much for me. For one, I'm sick. Two, we have an appointment in Norfolk today to see Harlie's plastic surgeon. Funny story... I told my night nurse that we were going to see Harlie's plastic surgeon tomorrow and she asked me what for, eye, ear? Ha! It's pretty comical that I have to be more specific when I say plastic surgeon. And no, not eye or ear... jaw. I hope Harlie has my sense of humor...

Anyway, so we'll be gone the whole day to go to Norfolk (and she'll miss school, of course). And I can't do my long mid-week runs on Wednesdays because I'll be gone too long and will be too far from the gym to leave Cooper there while I run. I think I have to run 9 this week. Which means I'll have to do them on Thursday, rest Friday, run Saturday. According to our training schedule, we're supposed to run four days a week. I've already cut that back to three days. And this week, I'll only run twice, and that includes my long run. And that's if I can, considering this cold.

I'm over the pressure of having to get these runs in. Five months of that is too much for me now. And it would be different if I thought that running like this gave me more energy. But the fact of the matter is that once you get up into this kind of mileage, the training drains my energy and I have very little left for Tom and the kids. So, I just need to hang on for five more weeks. And then it will be over.

Another reason I couldn't sleep is because I saw something on a signing website that's bothering me. The website said that the term "hearing impaired" is considered offensive to the deaf and hard of hearing community. And that they prefer those terms - deaf and/or hard of hearing - instead.

Personally, I've always used the term hearing impaired. And it sounds like that's what our county uses because they call it the hearing impaired program and Harlie has a hearing impaired teacher. And I feel like it accurately describes her hearing loss. Here is the definition for impaired:

1. Diminished, damaged, or weakened: an impaired sense of smell.

2. Functioning poorly or incompetently: a driver so tired as to be impaired.

3. Having a physical or mental disability: an impaired child in need of special assistance.

n. (used with a pl. verb)

People who have a physical or mental disability considered as a group: a swimming class for the physically impaired.

So, what's the problem? I see nothing offensive in that definition. Maybe I'm desensitized because Harlie has so many issues with so many different body parts and functions. I don't know. But, I don't get it.

I was so bothered by it, that after I initially tried to go to sleep, I got back up to google why the term hearing impaired was offensive. And here is what I found:

Hearing-impaired – This term was at one time preferred, largely because it was viewed as politically correct. To declare oneself or another person as deaf or blind, for example, was considered somewhat bold, rude, or impolite. At that time, it was thought better to use the word “impaired” along with “visually,” “hearing,” “mobility,” and so on. “Hearing-impaired” was a well-meaning term that is not accepted or used by many deaf and hard of hearing people.

For many people, the words “deaf” and “hard of hearing” are not negative. Instead, the term “hearing-impaired” is viewed as negative. The term focuses on what people can’t do. It establishes the standard as “hearing” and anything different as “impaired,” or substandard, hindered, or damaged. It implies that something is not as it should be and ought to be fixed if possible. To be fair, this is probably not what people intended to convey by the term “hearing impaired.”

Every individual is unique, but there is one thing we all have in common: we all want to be treated with respect. To the best of our own unique abilities, we have families, friends, communities, and lives that are just as fulfilling as anyone else. We may be different, but we are not less.

I just don't get it. This is the part that stands out most for me.

It establishes the standard as “hearing” and anything different as “impaired,” or substandard, hindered, or damaged. It implies that something is not as it should be and ought to be fixed if possible.

Who put the "standard" part in there? Who says hearing is standard, and not hearing means substandard? That's negative. Not the use of the word impaired. And her heart doesn't function like it should. Should we not have fixed that? And no, her hearing isn't as it should be because your ears are made for hearing. And she's missing an entire ear and the other one is damaged, diminished or weakened. There. I said it. And to try to fix that, we got her a hearing aid. And we're going to get her a BAHA if that helps her hear better, too!

In another paragraph, it read that the term "hearing loss" isn't liked either because for people born deaf, they never had hearing, so they didn't lose it.

Look, let's face it. Harlie was born with many birth defects. I suppose the word defect is probably offensive, too. The list of offensive terms is getting ridiculous. Other words that offend some people are special (when referring to children and their needs), and normal (what's normal, after all?). I'm not bothered by any of them.

Harlie is special. Her body functions differently than the norm, differently than it is supposed to. And she has special needs - a nurse and a tube in her throat in order to breathe.

I'm getting off subject. Before Harlie, I had never met a person who was deaf, or hard of hearing. Which, by the way, I don't like "hard of hearing". To me, that sounds like a volume issue. Anyway, since Harlie, of course, I've met some signing people (all hearing) and I had the pleasure of meeting a deaf couple this summer. I signed a little - an interpreter was there and she introduced us. I was so proud of the signs that I knew. And I was so proud that out of all the people that were there, I was one who knew some signs. Then I heard that there is a sign for "stupid hearing people". Now that's offensive. But, okay, fine. I felt pretty darn stupid when I was trying to sign with that couple. But I would have felt the same kind of stupid if I were trying to talk to someone who speaks spanish. I don't know that language, either. Doesn't mean I'm not capable of learning, though. But, whatever.

I think what bothers me most is that I've been using a term for years - one that I am completely comfortable with - that's considered offensive by a whole community. I don't want to offend anyone. But I feel this need to help other people understand Harlie's issues. And I feel that hearing impaired accurately describes her hearing loss. And it is a loss. I don't care if she was born that way or not. And her life is more difficult because of that loss. Trust me. I have seen her struggle in class. The loss of normal hearing is having a profound impact on what and how she learns and how she acts.

And what kind of mother would I be if I didn't try to do everything in my power to help her??? I keep going back to that sentence - It implies that something is not as it should be and ought to be fixed if possible.

Her heart.
Her jaw.
Her right lung.
Her butt.
Her spine.
Her inability to eat.
And her hearing.

All things that are not as they should be and ought to be fixed if possible.

She is not substandard. And she is not less of a person because of her losses. I don't see how anyone could think those things - about anyone. And I don't see how the term hearing impaired implies any of those things at all.

So, now I'm left wondering what I do from here? Do I continue to use a term that's known as offensive to people that I don't even know? Or do I start using Hard of Hearing (which I don't like)? And frankly, I'm pissed that I even have to think about this. Like I don't have enough of my mind! Sadly, it seems that a website that is meant to offer support, only added to my stress and worries. I'm sticking with what I'm comfortable with for now. Harlie is hearing impaired and I think she is an extraordinary little girl.

Thanks,
Christy

Harlie's Book

2011-10-05T13:57:00.000-04:00

Finally!!!

I took pictures of all the pages of Harlie's book. It is soft-bound and it has really done wonders. I have received nothing but positive feedback from all the parents I've met so far, and teachers. Each one of Harlie's classmates received their own book. Then they passed one around to each kindergarten class. And they put one in the library, too. The teachers that I've spoken to so far have said they really enjoyed it and I really think it has made a huge impact on the way Harlie has been treated so far. The kids have really been good to her and we are so, so thankful!!!

So, here it is (click on the picture to see it up close)...

I have to give the most credit to Cheryl Sale. She actually wrote it - when I give information about Harlie, I tend to be a bit too medical. But she really made it understandable for kids. I had to fight the urge to say "She's been through 20+ surgeries and over a year of hospital stays - JUST HAVE A HEART WILL YA?!"

This book has been an awesome tool, so far. And I highly recommend something like it for any kid who has some challenges.

Overall, I think kindergarten is great for her. There are some challenges - for her and for me. I never realized how often food is used as a motivator and/or reward for work. I guess that probably contributed to the two full years it took to potty train her! No M&Ms for her - just praise. And the food rewards are just constant reminders of something that's different and difficult about her. I hope that in time, the constant food around her and the excitement from the kids about getting food will make a positive impact on her.

Kindergarten is hard on me emotionally. She is VERY tiny. She's a good six inches shorter than everyone else in her class (or in the entire grade for that matter). She is VERY slow - physically, I mean. If the kids behind her in line don't pass her - there is a huge gap in the line. And it's not just that she's slow. She doesn't move the same way. Her movements are slower and not as confident.

The other day she was waiting to go to the potty. But when one kid would come out, by the time she got to her feet another kid would run right in front of her and go in. I was with her that day because we didn't have a nurse. It's just hard for a mom to see stuff like that. And if she could talk - she would say, "hey, it's MY turn" which, she can say with her device but by the time she hit the buttons, they would already be in there and they wouldn't hear the deivce anyway.

They were working on patterns the other day using Goldfish - Cheddar and Pretzel ones. The class chanted, "Cheddar, Cheddar, Pretzel" and Harlie didn't, of course. I showed her the buttons on the device, but you have to press three buttons to say cheddar or pretzel. So, she wouldn't be able to keep up with them anyway.

And I guess it's because of her hearing impairment??? But she really doesn't pay attention. She won't maintain eye contact when learning something new - especially if it's not something she's interested in. I was told that when a young hearing impaired (HI) child listens to someone talk - if they miss one word of the sentence, they don't understand the whole sentence. You need to have a good base of vocabulary in order to fill in the blanks. And a young HI child doesn't have that language base yet. So, imagine how easy it would be to lose interest when you don't understand most of what's being said.

I can't help but wonder if she might be ADD, too, since I've heard that siblings of a child with ADD are like 80% more likely to be ADD, too. Or something like that. God help us if she's ADD and needs meds for it - because eating is already a GIGANTIC challenge with her. Add the appetite suppressant medication to the situation and I might just give up for real!

Homework is challenging, too. She loses interest very fast. Last night we worked on naming five things she can hear. I know she can hear the telephone ringing, because when it does she signs and says, "telephone!" But, even after we went through a few things, I have NO idea if she understood what we were doing. She certainly didn't offer up anything she could hear.

It is both frustrating and worrisome. I know she's smart. I know she figures things out and remembers really well - but if she doesn't cooperate and show us (and her educators), what's going to happen to her???

But, this is partly why we put her in kindergarten this year. Hopefully a run through once, and another year of maturity and knowledge, will greatly improve her attention span and willingness to cooperate when it comes to the "work" of school.

The best thing about kindergarten so far is her ability to socialize with her peers. A couple of weeks ago I took her to see her local ENT for an ear issue (another blog post, I hope!). While we were in the waiting room, another girl came in and Harlie tapped her on the shoulder and waved and said "Hi!" I almost burst into tears right there! That is the FIRST time she's ever initiated contact with a child she didn't know. Before school, she would have just turned around and ignored her. I was so happy! What a positive impact kindergarten has had on her already!!!

Okay, I have to run. I really hope I'll update soon. I still have so much to share!!!
Thanks,
Christy

Ronald McDonald House Fundraiser

2011-09-28T21:43:00.000-04:00

I have to give you just a little background info before I can tell you about last night's event.

First - A few years ago, Tom's company moved locations. During the process they had some leftover computers. Tom remembered that the Ronald McDonald House (RMH) in DC was in need of some computers. Since he couldn't get to DC, he called our local house and asked if they wanted them. They did, so he took them there. While there, the manager gave him a tour and mentioned that they were going to remodel the kitchen. Tom said he would be interested in helping them in any way possible.

A year and a half later, he got a call asking if he was still interested in the kitchen renovation. Of course he said yes. Tom was invited to bid on the project. But, it wasn't as simple as a bid sounds. It was a long process of interviews and meetings. There was a committee assigned to select a company for the job and that meant a lot of work, and time. After several months they narrowed it down to three companies. Then two, then one. And they selected Tom! I meant to blog about it weeks ago - but as you know - my blogging time has been scarce lately.

Since then, Tom's been at the RMH several times meeting his subs and going over measurements and plans, etc. So, last week, Tom came home and told me that the RMH was having a fundraiser the next week and would I like to go. I said sure. Then a few days later (Thursday) he calls me and tells me that we have been invited as guests - and they want me to SPEAK about what the RMH means to me.

Oh, and by the way, it's Monday night and they are expecting about 350 people. Gulp.

So, I went home and started working on what I would say. Amazingly, the words just flowed and it practically wrote itself.

I felt MUCH better once I knew what I was going to say.

So, on Sunday we had my family over to celebrate Harlie and Cooper's birthdays. While they were all here, I asked them if I could read my speech to them to practice.

I read the second sentence (keep in mind the first one was "Hi. My name is Christy".) and started crying. Oh, no. That's NOT a good sign!!!!

Everyone laughed (more in support, but also because it was pretty funny and pathetic) including me. That just made me even MORE nervous.

It's one thing to live your life - it's another to hear your life in spoken words. I remember the first time I said that Harlie had Goldenhar Syndrome out loud. It was hard.

Anyway, I practiced and tweaked it some. The impending doom of having to speak in front of so many people pretty much consumed me.

Finally Monday night arrived and by then, I just wanted to get it over with. Tom said that they told him that I would be speaking early in the evening, so at least I could get it done and then enjoy the night.

The event was at a local hotel. Once we got there (around 6:30) and found his contact, she told us that I would be speaking sometime between 8:46 and 9:00!!!! Ugh! The agony!!! So, we walked around and ate some food (they had a lot of chefs from local restaurants there so you could try their food). Luckily, it was open bar. So I had to have a drink. Or two.

Ronald McDonald "himself" was there, available for photographs. So, Tom and I went and had our picture taken with him. It was funny. I hope they actually send us the picture. And speaking of pictures, I am so mad I forgot my camera! Ugh.

Finally, it was time for the speakers.

It says "Tom and Christy" but it was really just me.

My heart was pounding I was SO nervous!!!

I had to go up on stage (with lights!), stand behind a podium and hold a microphone. Geez. It was scary! But, once I started speaking, I was fine. I really was! I made sure I didn't speak too fast. I didn't mispronounce anything. And I looked up and around the room as I spoke. I was really proud of myself!!!

Here's what I said:

Hi. My name is Christy.

I knew that the Ronald McDonald House helped families. I just didn’t know it would help mine.

To give you a little background, we live here in Richmond. I’m from here, and my husband is from Pittsburgh. Our experience with the Ronald McDonald House is in Washington, DC. Our daughter was born there, because we knew she needed specialized care that was not available here in Richmond.

Harlie turned five years old, yesterday. A huge milestone, considering during my pregnancy we were told that we had only a 5% chance of ever bringing her home.

She has a craniofacial syndrome called Goldenhar. Her abnormalities prevent her from being able to breathe through her mouth and nose, so she is trached. She’s hearing impaired, she signs and is now learning to talk. She is a happy, normal little girl with a lot of medical challenges.

In addition to her craniofacial abnormalities, she also has a series of complicated heart, lung and spinal defects. She’s had 20 surgeries so far (four of them open heart), and she’s had another 15 procedures under anesthesia. We don’t know how many more are in her future. But we do know that she will need a heart transplant at some point - to quote her surgeon - when her heart runs out of gas.

All in all, she has spent well over a year of her life in the hospital.

So, we’ve spent a lot of time in a Ronald McDonald House. It has certainly helped our family financially. Hotel rooms in Washington, DC aren’t cheap or conveniently located.

And food is a big issue. The only option for food at the children’s hospital in DC is their cafeteria. It’s expensive. And it gets pretty old after a while.

Because of the Ronald McDonald House we were able to have a healthy breakfast at the house, pack our lunches and snacks and take them to the hospital. And after a long, tiresome day, we could come home and have a home cooked meal for dinner. And most nights, cookies or brownies - my favorite.

But aside from all that goodness, the Ronald McDonald House did a lot more for me…

Harlie’s birth was not a joyous occasion, like it should have been. While we knew about her heart and lung defects, we had no idea she had Goldenhar Syndrome. When I was discharged from the hospital, I didn’t have to pack up any congratulatory flowers, or balloons. No one knew what to say, no one knew what to do.

Our social worker at the children’s hospital told us about the Ronald McDonald House and got us set up there. We left the hospital and went to Target. Normally, one of my favorite places in the world, just not that day. I remember thinking I should be at home in my pajamas holding my little baby. But, instead I was two hours away, standing in a Target.

And I had never felt so alone. And so scared.

We bought some necessities and headed to our home away from home, the Ronald McDonald House. I had never been there before. The manager showed us around, and explained how things worked. I saw other families there. I saw thank notes from happy families who had gone home. And I saw other new moms, who were just like me – confused, scared and in shock.

And then I realized I wasn’t alone. I wasn’t the only scared mom who had to go through something I didn’t want to go through.

And that brought an unbelievable amount of comfort to me. And hope. And at the time we needed both desperately.

The next morning I walked into that hospital a new woman. I had hope. I loved my daughter and was willing to do whatever I had to do to get her home – where she belonged.

Now, when we go to the Ronald McDonald House, we take our daughter with us. The first night we stay together, the three of us. She plays and explores and has fun. And then we get up early the next morning to head to the hospital for surgery. The Ronald McDonald House provides a routine. It provides comfort – but now not just for me and my husband, but for Harlie, too.

And for that, we are so, so grateful. Thank you.

They clapped and I left the stage and went and stood next to Tom. Immediately people started coming up to us, saying nice things. They said thank you for sharing your story. They asked how she was doing now. And they said that I didn't seem nervous at all up there. Crazy! Oh, and two people told me that I just made a lot more money for the RMH. haha!

I met two women who lost their sons to complications from congenital heart defects. One was 10 years old and the other was older than 6. He died while he was waiting for a new heart. It was a reminder that even though Harlie is doing great - there are never any guarantees. Since Harlie's birth, I've met/known so many moms who have lost their children because of heart defects. It is so sad. And scary. As one of the moms said, "they can't save them all." Truly heartbreaking.

Another person who came up to us was Ronald McDonald. And a restaurant owner came up to me and told me that he's had two children born prematurely and he thought he had been through it - until he heard our story. Then he gave me a hug. It was really great to receive such warmth and kindness from complete strangers.

I am so glad I had the opportunity to speak. I think it was a great experience. And it wasn't nearly as bad as I thought it would be.

Okay, that's it for now.
Thanks!
~Christy

Happy Birthday Cooper!

2011-09-26T16:56:00.000-04:00

This little guy...

is three!

He is the funniest little kid. We are so blessed to have him in our family. Happy Birthday Cooper!

We love you!

I would say more, but we are off to a Ronald McDonald House fundraiser, where I am SPEAKING! Gulp. I am a nervous wreck. So, I can't write more. I'll let you know how it goes... Please wish me luck!

Thanks!
~Christy

Happy Birthday Harlie!

2011-09-25T22:34:00.000-04:00

It is so hard to believe that this little girl...

turned into this little girl...

Five years old!?!?! I can't tell you how grateful I am to be able to write this post. How grateful I am for every close call that went our way. How grateful I am for every wonderful moment, filled with smiles, laughter and love. So worth all the struggles. So worth all the heartache. So worth all the pain.

I think she would agree.

Happy Birthday to my happy little girl!

Thanks!
~Christy

Nursing

2011-09-23T22:00:00.000-04:00

I finally had my first interview with a potential new nurse today. For a couple of months, I've been asking our nursing agency to keep a look out for a replacement for Brandy's maternity leave. So far, nothing. Typically, I'm not a worrier - but I am starting to stress about the situation. The bottom line is that in order for Harlie to go to school, she has to have a nurse. Or me.

I do have a back-up plan. One I hope to not have to use. If Brandy has to stop working before we find her replacement, a friend of mine is going to watch Cooper, so I can take Harlie to school. Clearly, this is not a good long term solution. And I pray that Brandy will still want to return to work after she has her baby. So, I'm hoping I don't really need a long term solution anyway.

Since I had not heard from our agency, and I was stressing, I called another agency. She said the only difficult thing about filling the spot is that most of their nurses live downtown or on the southside, which is not close, and the distance would make a 6:30am start time pretty unrealistic.

But she called this morning and said she found a nurse that doesn't live far and sent her on out.

I just want to state how incredibly difficult it is to invite a complete stranger into your home and your life. We have been SO spoiled!!!! I don't know how I'm going to do this! The thought of some stranger suctioning Harlie, or helping her go potty, just makes me ill!!! Yet, I have no choice!! And you know what's sad? Murphy didn't even ask who she was or why she was here. Just a normal day... with various medical personnel coming and going. La de da.

I'll be honest. The nurse was a little odd. But that doesn't mean she's not a good nurse. Right?

I guess I'll think about it over the weekend.

I have a lot more to tell you, but I am falling asleep and I have to get up early and run 16 stupid miles. In the rain.

Thanks!
Christy

YAY!

2011-09-20T13:58:00.000-04:00

Tom found the photos!!! Whew! He's the greatest! So, all is well again!

So great, that at a recent party (more on that later) Murphy got face painted to look like Tom (it's football season, hence the beard). Pssst.... it was Tom's idea and Tom bribed him.

I feel so much better now! Now I can go and continue working on Harlie's birthday poster. And maybe a little video... we'll just have to see how time goes.

Thanks!
~Christy

Who's got purple shoes?

2011-09-19T22:47:00.001-04:00

Got Harlie some awesome new shoes this weekend...

I know, completely impractical. But, she can wear them with or without her braces. And they are FUN! Tom's mom and stepdad (Grandma and Pap Pap) came to visit this past weekend to celebrate Harlie and Cooper's birthdays since they can't come next weekend. They love all their gifts! Aunt Mimi got Harlie this awesome spinning disco ball. She LOVES it!

And Grandma gave her this Tangled card that plays music when you open it. She LOVES it as you can tell...

Cooper got this nerf hammer and Harlie promptly took it away from him.

Cooper finally has his OWN legos! He loves them!

Cooper also got the Lego movie, Clutch Powers, and he and Murphy watched it today. I did not hear a peep from them the entire time.

They also scored big with some Mercer Mayer books and lots of Charlie Brown DVDs! Harlie can actually verbalize "Charlie Brown." Thanks so much Mimi and Grandma and Pap Pap!!!

So, I'm in another panic. Remember when I told you that we lost our pictures and sent the hard drive away to be restored, and after forever they said they recovered everything? Well, I have to make a birthday poster board for Harlie for school. So, I went to find some old pictures and we are missing most of 2009, all of 2010 and the first half of 2011. That sick feeling in my stomach is back. Hopefully Tom can find them...

More later! Thanks!
~Christy

Harlie's Homework, Classwork and Artwork

2011-09-18T17:44:00.000-04:00

This was Harlie's homework the other night...

And this was a class project...

And for this week's shocker... she actually licked or at least put each cracker in her mouth! And while that might seem completely natural, it totally isn't. That is CRAZY!!! And after "trying" all crackers, she went back to the graham cracker and took the smallest of nibbles. Seriously, words do not describe how incredible that is.

And since I am finally getting around to posting some photos of her work, this next picture is from her Kindercamp experience. They had to draw themselves with a friend. And when they asked her who the "friend" was in her picture, she signed "Mommy." Awwwww! She really DOES love me!!!

Even though I'm just a floating head with no body. I don't even care. I take the love when it is given!!!

Oh! And back to shockers... Tom and I went out last night to a party. And Harlie's nurse gave her a juice box. With a skinny straw (which is harder for Harlie to get lip closure around). And she DRANK THE WHOLE DARN THING!!! Unbelievable. So, tonight when we went to the grocery store, I bought this...

And I'm hopeful that since it's similar to a juice box, she'll actually drink it on her own. That would be awesome if she did! That would be great for her snack time.

I also bought these...

Just thought I'd see if these cups were more fun for her. I'll try anything if it makes her want to eat or drink.

Stay tuned this week. I have a ton of posts coming up. Next weekend is a BIG weekend... Harlie will turn FIVE years old on Sunday, the 25th. And then the next day, the 26th, Cooper will turn THREE. Oh, her birthday is so full of emotions. My thoughts and heart have been consumed with what was going on five years ago right now. I was on bed rest in McLean, VA, staying with my brother's wife's sister and her family so I could get to the hospital should anything happen (thank you Kerry and Thomas!). How scared I was. How I had no idea of what was to come. How I had no idea how strong I could be. Or how strong Tom and I could be. Did you know that the divorce rate for couples with special needs children is between 80% and 90%?

So, more to come...

Thanks!
~Christy

More Misc. Updates

2011-09-15T22:22:00.000-04:00

If you've spoken to me this week, you know I've been stressed. Kindergarten is hard. Being Harlie's advocate for her education is hard. But, I know it will get better. Everything is just so... new. The hearing impaired program went through a lot of changes this summer. The program is new to this school. The principal is new. And everyone working with Harlie is new to us. Our routine is new. And the longer days and harder work is new.

We are going to have a meeting next week to discuss Harlie's communication issues. I think I will feel much better after that. It's just that I know we need to make some changes to her IEP (Individualized Educational Plan). But, until then, they have to follow the one that's in place.

Also, the bus situation is really stressing me out.

Here's the skinny: Harlie goes to a school out of our zone that's about a 10-12 minute drive away. She is the farthest one from the school, so she is the first one to be picked up and the last one to be dropped off. Our pick up time was 6:48am to be at school at 7:33am so she's in her seat by 7:50am. Last week it changed to 6:53am. And then, without telling me, they changed it to 6:41am - so she missed the bus that morning. Even though it comes to our driveway, she missed the bus. Then it went back to 6:48am. It changes because kids are being added or removed from the route.

The drop off time was 2:50pm.

She is spending a lot of time on the bus in a day. And it is negatively impacting her nutrition. Today I spoke with Transportation. Our new pick up time (as of the beginning of the conversation) was 6:40am!!!! And drop off is 3:00pm!!! That equals TWO HOURS on the bus each day! I already wake her up at 6am. And we struggle getting in an oral feeding for breakfast. So, we have to tube her a lot in the mornings.

She eats lunch at 10:40am. She self feeds a few ounces of fruit (at the most) and the rest is formula via her g-tube. And then she doesn't eat again until she gets home after 3pm! By the time she gets in, and we get her snack ready, she's eating at 3:30pm.

So, when we sit down for dinner, around 6pm, she isn't ready to eat again.

And she gets a fraction of real food than she's used to getting. And this has it's own chain reaction of issues. Real food plus formula works better for her body than just formula.

I explained this to Transportation and she was sympathetic. But, the fact is that there are only two special needs buses that serve this school (take the kids that aren't zoned to go there, but go there for special programs). One bus goes to a totally different area of town. And one comes to our area. I asked her when they add an additional bus to create another route and she said when the pick up time is 6:30am.

She went on ahead and pushed back the arrival time at school from 7:33am to 7:40am. So, she changed our pick up time from 6:40am to 6:47am. She also said she would look at the route to see if they can do anything to help. But, I don't have high hopes.

So, we might have to drive her there in the mornings. But, I'm stuck in the afternoons. Cooper naps and there is no way I'm waking him every day and letting him get shorter naps five days a week. Plus, picking her up means I'm not picking up Murphy.

And then I think about how different (easy) it is to get Murphy up, dressed, fed and to school. Ugh.

That reminds me, Cooper is liking his new preschool. Today was his second day. And when I picked him up his teacher told me that he needs to work on his "listening skills." Really?!? I had no idea. Is there anyone that doesn't need to work on their listening skills? Especially a two (almost three) year old? Funny stuff.

Back to Harlie again, she counted from 1 to 11 (the number of days till her birthday) on Wednesday - using her voice, in front of the whole class! And her teacher told me that she asked for the "blue lizard" using her voice and she totally understood her! She is trying to verbalize so much more now!!!

Her teacher also asked me if I wanted to provide a goody bag to keep in Harlie's class. So, when parents bring in treats (cupcakes, cookies, etc.) for the whole class, she can pick something out of her goody bag so she isn't left out of the celebration. Awesome!!!

I've started working on Harlie's private therapy schedule. My plan (as of now) is for her to see her physical therapist and a prior speech therapist (to work on the device) on Thursday afternoons. I think I might hire an additional speech therapist for another day to work on her verbalizations. I've got messages out to two STs, so we'll see what we can work out.

I called our local rep for the company that makes Harlie's communication device. I am going to schedule some time with him so he can train me on some things on the device. He will also train school personnel, so hopefully we can work something out soon.

I made an appointment to see Harlie's plastic surgeon in October. She's going to have to miss a whole day of school for that one. That stings. But, there is nothing I can do. He only has clinic one day a month. He said after the last surgery that he would want to wait years before doing another one. And by the time summer gets here it will be almost THREE years since her last one. That is so hard to believe.

We are also going to see her local ENT next week. Ever since that episode when her ear bled, she keeps pointing to her ear and signing "broken" to tell me that her hearing aid isn't working - even though it IS. So they worked us in for next week to have her look in her ear and then be tested by her audiologist. I am hoping it's nothing serious or permanent. And I'm trying not to worry about it. But, of course I am!

I forgot that I haven't shown you Harlie's book! I will take some pictures of it and post about that soon. They are passing it around to all the kindergarten classes. Today another class read it and a lot of the kids came up to Harlie on the playground to say hi. For the most part they all seem to want to play with her. But one girl wanted a closer look at everything and would not get out of Harlie's personal space. Brandy tried to answer her questions (why this, why that) but she wasn't satisfied. The worst part is that while she was turning her head and studying Harlie, she had a scrunched up look on her face. When she wouldn't stop, Brandy had to send her away. Brandy said that Harlie didn't seem to notice the girl's expression, she just wanted her to get out of her face.

As smart as Harlie is, I can't help but wonder if she's more aware than she's letting us know.

Well, it's late. So, that's it for now.

Thanks!
~Christy

Quick Update

2011-09-12T22:26:00.000-04:00

So much to blog, so little time...

Murphy

I can't remember if I told you that we had not restarted Murphy's ADD meds. He gained four pounds over the summer (and he's still super skinny) and we were so enjoying having him hungry!!! So, we were going to see if he could be successful without the meds since his teacher/class this year is a better fit (a calmer, less stimulating environment) for him.

I e-mailed his teacher Wednesday night (day 2) and let her know of his ADD diagnosis last year and that we had not restarted his meds and we would appreciate her feedback. She e-mailed me back that he was doing "fine in some areas but having difficulty in others." She said she wanted to meet with me or talk over the phone. Darn it!!!

So, she called that afternoon and told me that he is a very sweet, respectful, social and likable kid. But, that he cannot stay focused. She said that he plays with the stuff in his desk. When she was explaining something, she looked over and saw Murphy using two glue sticks as binoculars. He clearly was not listening to a thing she was saying.

So, on Friday, we gave him his meds and sent him on his way. The good news is that afternoon his teacher e-mailed me and said that he was so much better that day and that he was calm, focused, helpful and one of the best students in class!!! At least we KNOW he needs the meds. No more second-guessing ourselves on this one!

The bad news is that all day on Friday he only ate a few carrot sticks and a half of a granola bar. All day! It sucks that we have to chose between learning and nutrition. They are both important!!!

Harlie

Kindergarten is going well for her, I think. She seems to like it. But, of course she can't tell me all about it. Although I am THRILLED to report that she has been wearing her speaking valve (PMV) and she has been making a huge effort to verbalize. The other day I asked her if she had a good day and she SAID - clear as a bell, "good day." Murphy was in the kitchen and he could hear and understand her perfectly! That was so awesome to hear!!!

There are some kinks to work out (which is totally expected). Unfortunately, her communication device isn't being used the way it should. And even more unfortunately, it's going to take some effort to get that to change. After I found out they went all week without using her device I e-mailed her teacher that we need to have an IEP meeting. The bad thing is that we had her last IEP meeting before we made the big decision to pursue using her device as a main means of communication. So, she has been assigned a sign language interpreter. But, that's not what she needs. She can hear with her hearing aide on. She just needs someone to help her use the device to speak. So, we'll see what happens...

She missed the bus this morning. Her original pick-up time was 6:48am. On Thursday we were told the new pick-up time (starting Monday) would be 6:53am (YAY!). So, this morning we went out at 6:53 and she was driving away.

The worst thing about this was that it was the one day that I had a commitment to be somewhere at 9am and it was an hour's drive to get there. So, when she missed the bus at almost 7am, I still had to get a shower and get ready AND drive them to school (in the opposite direction of where I needed to go). Oh, and my gas light was on, so I had to stop for gas. Considering I woke up at 5:30 to start working on getting her up and ready (I wake her at 6am after I give her a breathing treatment and meds) it was a busy morning and not a good one to miss the bus - it really stressed me out. I felt so horrible that we didn't try harder to be at the end of the driveway. But, we were feeding her breakfast and then on the way to the door Harlie said she had to go potty.

As it turns out, Brandy found out that after they told us our new pick-up time was 6:53, it got changed to 6:41!!! And no one told us. But the driver came at 6:48 and then waited the required TWO minutes and then left. UGH!!!

So far there are a lot of issues with riding the bus. And they are making me feel very stressed. But, I really don't want to commit to driving them everyday. So, I'm going to call Transportation tomorrow and see if they can do anything to fix the issues and make riding the bus a little more bearable. As it stands right now - she spends TWO hours a day on the bus!!! Doesn't that sound like it's too much?!?!?

I am also worried about the playground. Jennifer went to school with her on Friday and she said that she was run over by the other kids. She tried to help her play, but she's so slow compared to the other kids so they just run right over top of her. Jennifer said that she and the other little girl that's hearing impaired gave up and just went and sat on the steps. Ugh.

Tom measured the kids the other night on our measuring wall upstairs. Cooper is one inch shorter than Harlie (and he's two years younger) and Harlie is SIX inches shorter than what Murphy was when he started Kindergarten.

Oh! And Harlie lost her first tooth - naturally!!! She's lost four in the past, but they were all due to surgical issues. This is not the best picture - but it's all I got. She didn't quite understand what all the fuss was about and had no interest in showing her teeth to the camera.

The picture was taken during a feeding. Here are more photos from that awesome (note the heavy sarcasm) feeding session:

Are you still here?

Why do you make me eat this crap?

Honestly, I don't know who hates oral feedings more - me or her?

Cooper

Tomorrow is Cooper's first day at his new preschool!!!! WOOHOO!!! My house is a wreck, Harlie's food supply is low, laundry is piled high and paperwork is out of control. Oh I can't wait to get some things accomplished around here!!!! And I hope he really likes it, too.

Well, that's it for now. More later!

Thanks!
~Christy

The First Day of School!

2011-09-06T22:19:00.000-04:00

Whew! What a day! I must say that it went very well and we are so happy about that!

There are some things we're going to change up for tomorrow. I fully expected this week to be full of changes, trying to figure out what works best. Normally, I go into Harlie's room and start her breathing treatments (2 meds, which takes about 15-20 minutes). I put it on her while she's sleeping and don't wake her until it's finished. While that's running, I draw up her Prevacid and baby aspirin (they are pills and need about 15 minutes to dissolve in water in a syringe). I have to give that to her on an empty stomach, and 30 minutes before she gets any food.

This morning, to save some time, I only gave her the Prevacid - it only takes a few seconds to dissolve. And I'm going to give her the baby aspirin at night from now on.

As for her breathing treatments, she gets two, one is given once a day, the other is given twice a day. So, I'm going to reverse it and give her both tonight and then in the morning, I'll only have to give her one. So, between those two changes, I'll save almost 30 minutes.

At any rate, she fought waking up, as usual. I had to physically pick her up and put her feet on the floor. She was a little upset. She walked to her window, pulled the shade back and looked out (it was still DARK) and then turned around and looked at me, as if to say, "what the hell?"

Once she was up and I got her teeth and hair brushed, she was already in a better mood. Then I let her choose what she wanted to wear (between two outfits I laid out for her, of course). And she hurried downstairs.

As soon as we got downstairs, it was almost time to go. Brandy got here and put her shoes on, tubed her a can of breakfast and the bus pulled up at 6:48am sharp.

I didn't even think about the weather and let her walk out the door in a tank top and shorts and it was chilly and rainy! I had to run back in the house to get her a raincoat. But, Harlie is VERY hot-natured so she was probably just fine. We forgot to put on her harness before she got on the bus. And then when I put it on, it was too big, so I had to run back in the house to get a smaller extension for it, so it would fit. So, the bus was at our house for a little longer than it should have been. Tomorrow will be better for sure.

Harlie had no problem getting on the bus. And even though she's gotten on the bus before - it felt SO very different for me. I definitely had to fight back the tears. Okay, fine. Yes, I cried a little. Tears of both fear and joy.

Once she was off, it was time to focus on Murphy. I took a wipe board and wrote his "to do" list and he went through everything on the list without one word from us. I can't tell you how much better this made our morning. Seriously - the best idea I've had so far. He was ready to go and wearing his backpack - 40 minutes before we had to leave the house. When Tom told him to take it off because we weren't leaving for a while, he said that it was "comfortable."

Finally, 7:30 rolled around and it was time to leave. And boy was it yucky out! It rained last year on the first day of school, too.

I cannot tell you how different his class is this year from last year. All the kids were in their seats, quiet and calm and ready for class. Last year it was pure chaos with kids moving in all directions working on their check-in procedure. I am really excited to see how he does in this calmer environment.

For various reasons (mainly due to the holiday weekend) we did not have Murphy's meds ready to give to him today. But, after seeing the class environment, I think we might see how he does without the meds. So, we're going to hold off on them for a few days.

When I picked him up from school today I asked him how the first day was and he said, "It was awesome!!!" How great is that? He said he really likes his teacher. And they went to the library and he checked out a chapter book - and no Halloween books!!! Wow!!

About an hour or so into the day, I sent Brandy a text to see how Harlie was doing. She said that she was doing well, dancing in circle time and that she heard Harlie answer a color question with her device. I asked her how the other kids were and Brandy said they were fine. They just had some questions about why she doesn't talk. The teacher answered them and then moved on with class.

After lunch Brandy sent me a text to let me know that Harlie fed herself half her peaches and drank an ounce of formula, with NO problem!!! Then Brandy fed her the rest, discreetly, with no resistance from her at all!!! That girl kills me.

She also said that she asked Harlie if she was having fun and Harlie said "yes." Then she asked her if she liked kindergarten and she said "yes." Yay!

Overall, I think she had a great day. Later on, her teacher called and said that she did very well. She followed instructions just fine. She didn't want to participate in some activities, but after some prodding, she finally gave in and did what she was told (like coloring or something). And then she said that they have PE tomorrow, so she wanted to know what she could/couldn't do.

After they were both home from school, I was immediately exhausted!!! Come bedtime - they all went to bed with no problems and were sounds asleep in just a few minutes. Ahhh....

Speaking of sleep....time for me, too! Thank you!!
~Christy

The Night Before Kindergarten

2011-09-05T23:49:00.000-04:00

Another week has passed since my last post... I hate when that happens. I've definitely gotten to the point where I need to blog. Even if I had no readers, I would still blog, and then feel better. It just helps me to think things over, find the positive, and then hold on to it, until I move on to the next thing.

I have a lot to tell you, but will have to get you caught up later on this week. For now, I want to talk about how tomorrow is Harlie's first day of Kindergarten!

What I'm excited about:

1) The fact that she's here, alive and doing so great that she's able to start Kindergarten at all. This is a day I never dared to dream about. Since before she was even born, the focus has been on getting through THIS day and worrying about tomorrow, tomorrow.

2) The hope that being in a general education class will have a profound, positive affect on her in all areas and that she will begin to socialize with her peers in a more age appropriate manner.

3) The possibility of what she can/will learn this year with more hours in a classroom and the support of a brand new team.

What I'm proud of:

The fact that she's spent more than ONE YEAR of her life confined to a hospital bed, recovering from 20 surgeries and many other procedures yet she's still academically ready to start Kindergarten. Isn't that AMAZING?!?!? This is something I must remind myself of if/when I doubt her abilities OR, more importantly, OTHERS doubt her abilities.

What I'm afraid of:

1) Her not cooperating or adjusting to the new demands of school.

2) Other kids. More specifically, kids not accepting of her.

3) Her noticing the reactions of others (and hearing the comments/questions) and then it affecting the way she views herself. I think this is probably not an "if" it happens, but a "when" it happens. And I SO don't want it to happen.

4) Educators not connecting with her or thinking she doesn't know or can't learn.

5) That she'll get hurt - physically, I mean. That she'll get knocked down in the hallway or on the playground and that she will seriously hurt herself. Her spine is still healing and her jaw is full of screws. What if she gets hit by a ball in the chest? I've heard stories of that killing kids with heart defects! Okay, deep breaths. I know that's not likely to happen, but it's still something of which, I'm afraid.

6) Our new morning schedule and her bus arrival time - 6:48am!!! Students have to be in class by 7:50. We must be the furthest away, so we are the first pick-up. Since she's special needs attending a different school than where she's zoned to go - they send a bus to our house to pick her up. Harlie is NOT a morning person. I can count on one hand how many times she's woken up on her own without one of us having to go and wake her up. And most of time you have to physically "help" her get out of bed.

What I'm sad about:

That my daughter does not attend the same school as her brother(s). I cannot tell you how incredibly sad this makes me. But I'll try. When we bought this house - we didn't buy it for the house, but more for it's location - we could walk our kids to school! When we had Cooper, we were thrilled that she would be flanked by two brothers who could take up for her and look out for her. We had no idea that they would be no where near her (like miles and miles away) when she went to school.

I am terribly sad that she will be all alone, in a completely different school district. Murphy is sad, too. At first he was so excited that she would be going to Kindergarten and he said, "With me at my school?" And we had to say no. And then he hung his head. And I'm sad for Cooper, too. Because he'll end up being alone, too. It's just not how it should be when you have three kids so close in age.

I think of how different this experience would be for all of us if tomorrow morning, we could all leave the house at 7:30 and walk down the street together. But those are the images I have to shut out from my mind. Just like her not having a trach or her being able to speak or eat regular food. It is just not to be for now. So no use torturing myself.

I probably should have ended with the "What I'm excited about" items. I would prefer to end my posts on something positive. And I am happy that she's starting kindergarten. I really am! But it also kinda feels like I'm throwing her to the wolves. And for the moment, I am glad for the trach so that Brandy will be with her. Ahhh, our nurses. I am so, so thankful for our nurses.

Well, that's it for tonight. Please send positive thoughts for her (but mostly for me) that all will go beautifully and that kindergarten will be a wonderful experience for her (and for me).

Thank you!
~Christy

Patrick Henry Half Marathon vs. Hurricane Irene

2011-08-27T15:22:00.000-04:00

Well, as expected, it was rainy. And windy.

Conditions at the start (7am):

Rainy, 74 degrees, 94% humidity, variable winds 7mph (which totally increased in the two hours we were running).

Honestly, I had fun. But that's only because of my running partners...

Heather, Me, Anna and Katherine.
Can you tell which one of us is super excited about running their first half?

I am not a fan of running in the rain. I like to run. But I do not consider myself a die-hard runner, running in all conditions. Much less a HURRICANE. Okay, the beginning stages of a hurricane. Either way, I think it was a miserable run.

It started raining just a few minutes after the start. It was a drizzle at first. And then it slowly increased the entire time we were running. The winds increased as well. At one point Heather said something and I said, "I'm sorry Heather, I couldn't hear you over the wind." And we were shoulder to shoulder. Not good running weather, to say the least.

We kept on feeling like we were running fast - and we'd look at our Garmins and our pace wasn't nearly as fast as it felt. So deflating!

They changed the course this year. Last year we ran through the cornfields and cow pastures (well, on the streets that went through the fields, I mean) first, ran a long mile at mile 4, and then went through the little town of Ashland close to the finish. Frankly, I liked it that way better.

This year, they reversed it, and we ran through the town first, then the pastures, then the hill at mile 11. The bad thing about it, which they could never have predicted of course, is that we ended up in the pastures and cornfields - with no protection - as the winds and rain increased.

One thing I liked about this run last year was the sound of all the tennis shoes hitting the pavement. With no other sounds around, it was really cool. This year our shoes were all squishy sounding. Not so good.

Oh, and this year the start and finish was in a different place. And it was RIGHT next to the railroad tracks (I could touch it). And as we turned the corner and approached the finish (close enough to see the finish, too far to sprint to it) a train came through - and it was so LOUD. I guess the conductor thought he was being supportive by honking that stupid train horn as much as he did. I think I temporarily lost my hearing.

Anyway, we finished just in time. My time was 2 hours and 10 minutes. Every time I do a half marathon, my time is substantially slower. (My first was 1:58, second 2:05, this one 2:10) But, we were not going for a PR (personal record) today, and considering the conditions, I'm happy with our time.

This is us at the finish:

Me, Heather, Anna and Katherine.
Congratulations to Katherine for her first Half Marathon!

FYI - the dude to the right (you can see his shoes with the orange laces) wears A LOT of cologne when he runs. Wearing cologne should be BANNED from all running. And I can't believe that someone has to be told to REPLACE cologne with DEODORANT. We were next to him at the start. Then we passed him twice during the run. He was SMELLY and I thought I was going to pass out. Ugh.

Oh, I debated on whether to wear a running skirt or shorts. Which is better in the rain? I guess I can't really say because I haven't ever been as soaked as I was today, in shorts. But, I think the skirt was a good call. I was able to wring it out several times during the run.

When I got in my car to come home the rain really picked up. I had to use the speedy wipers, that's how hard it was raining.

Looking back, I'm glad I did it. But, boy am I glad that it's OVER.

Okay, must finish this before we lose power. Good luck to all my family and friends who are in this hurricane. I hope all is okay tomorrow!

Thanks!
~Christy

Half Marathon

2011-08-26T21:59:00.000-04:00

With Hurricane Irene approaching our area, I am off to run the Patrick Henry Half Marathon tomorrow morning. From what I've heard, we should be done our run before the storm really gets here. My fingers are crossed because I wouldn't enjoy running 13.1 miles (which will take 2 hours) in wet shoes. Yuck! And I hope it's not too windy.

Okay, I'll update you tomorrow.

Thanks!
~Christy

Appointment with the surgeon...

2011-08-23T21:33:00.000-04:00

...eh, not what I hoped for.

She wanted Harlie to wear the brace for another month. But we compromised with two weeks. That way she will have it off for school. I told her that she doesn't complain - it's me that hates it. And I recognize that the long-term goals of healing are more important than the pain of dealing with the brace, so if she really wanted us to keep it on, I would. But, she said that two weeks will be fine. That way when she goes potty at school, she'll be able to do it on her own. It is hard to get her shorts up and down with the brace because it goes past her hips.

So, I'm thinking her surgeon would not have approved of this activity...

Notice Cooper posing. What a ham!

Weeee!

And of course, some video...

How could I deny her this fun? There is only so much activity I can make her miss.

Anyway, when she gets home after school, we need to put the brace back on her for the rest of the day. And over time we can wean her off the brace by waiting longer and longer to put it back on her. She said that it can actually be more of a discomfort to stop wearing the brace cold turkey because all those muscles haven't had to work much over the last five plus months.

I asked if she could resume normal activity once the brace comes off. I had my hopes up for a gymnastics birthday party for her since she loved it so much and hasn't been able to go since the surgery. But she said no. No gymnastics until she sees her next and she will decide then.

So, the next time we see her? MARCH 2012!!!! I am SO bummed!!! She loved gymnastics!

On a positive note, the surgeon said that her x-rays looked "beautiful." On the side view one, she is much straighter than she was. She said that she could start to curve forward over time - but she hopes that doesn't happen. Of course.

Harlie is so cute getting x-rays. She stands there and does everything the x-ray tech asks her to do. And he was hilarious because he said, "okay, move your little foot back some. Exactly." and then "bring your little feet together. Exactly". He was cracking me up.

Oh, and she can only carry a light backpack. Which, I already knew, really. But it just goes to show you how long this recovery is taking and how many things are affected. Spinal fusion surgery is no joke. I think I would have to say it has been the worst surgery so far. And I sure hope we don't have to do it again.

On the way home there was an earthquake that measured 5.9. The epicenter was in Mineral, VA, 25 miles from our home. According to FB, it was felt from North Carolina to Canada. We were in the car not that far from home, and we felt nothing. I guess when you're moving 70 miles an hour in a car, you don't notice the ground shaking. So, I apparently missed the biggest news story of the day. Oh well.

Oh, and would you believe our luck? We decided just a few days ago to try and take the kids to the beach - together - all of us - as a family. Harlie has never been. Tom took Monday off. And after I run the Patrick Henry Half Marathon this Saturday, we were going to go to Virginia Beach to stay with some friends who we haven't seen in a long time. We were going to go to the beach on Sunday and take a baby pool and umbrella for Harlie (since she cannot go into the water - other than just her feet, of course) and we were going to have so much fun!

And now Hurricane Irene is totally screwing up our plans. The only FUN plans we had for the entire summer. I am so, so disappointed!!!! And I don't think we can squeeze it in after the storm passes. A whole summer and the kids have done nothing exciting. The boys and Tom went camping and boating a few weekends ago - but Harlie had to stay home with me. I am so mad at myself for not making more of an effort earlier in the summer. But it was SO busy!!! Well, I am not giving up hope yet - but according to reports, it is not likely to happen.

Oh! And my nephew, Charlie, is playing in the Babe Ruth Little League 13-year old World Series Tournament in NY. Well, tonight his team won and Charlie got MVP!!! He hit the winning run. So now they play again tomorrow night. What a great experience for him! Congratulations, Charlie!!!

Okay, that's it for today. More later!
Thanks,
~Christy

Transitions and Kindergarten Screening

2011-08-22T22:03:00.000-04:00

It is now Monday night. I wrote this post on Sunday night. I was a little upset and I thought about deleting it - but these feelings were real at the time and it just illustrates some of the challenges with having a special needs child. So, I'm posting it - with today's update at the end.

*****

With just two weeks to go until school starts - there's a lot going on. I'm pretty upset right now, so I'll try to be as understandable as possible.

Change in School Location
Last year (and the year before that) Harlie went to a different school than where she will go to kindergarten. That school used to hold the Hearing Impaired (HI) program. But, the county is trying to establish "feeder patterns" in the special education areas so that kids in the same program stay together as they age. And this is the first year, so you know how that could go.

Sounds like a good concept. But, I have to admit that I was sad. I liked where she was, and she seemed comfortable there. People knew her. And who actually likes change anyway? Especially when it comes to your special needs kid? But, everyone really talked up the principal at the new school and said she had a special education background, so it was a good fit.

We met the principal and toured the school along with a group of HI kids who would be transitioning to this new location as well. There's only a handful. And only a total of four starting kindergarten (two who speak, so they don't need interpreters/instructional aides) and the other two is Harlie and a classmate of hers from the previous school (who do not speak and require an interpreter/instructional aide). All these kids also see a HI teacher (in addition to their regular teacher) during the day as well.

Well, just a few weeks ago I heard that the principal has left the school. And she was only there for two years. And the one before her was there for a short time as well. So, now I know that the school has been through a lot of change in the past few years. And they have not hired her replacement. So, the school has NO principal. And school starts in two weeks.

At the ice cream social on Friday, the resource teacher spoke in place of the principal. It appears that there is no assistant principal, so she will be filling in as the principal until one is hired. So, you know that she will be stretched pretty thin.

Staff Changes
Harlie did not need an interpreter/instructional aide last year since she was in preschool (she will require one now, though). But she did get HI instruction from an HI teacher. And she is awesome and is so good with Harlie. She challenges Harlie in a way I cannot. I'm her mother, after all. So, I have been very thankful for this HI teacher. She is also the one that wrote this book that I haven't been able to show you yet (as soon as I get the books, I will show you).

During our last IEP meeting at the end of the school year, the county's audiologist was in attendance. I asked her if Harlie would keep the same HI teacher at the new school. She wouldn't tell me then because she didn't have all the assignments done.

During the summer, I found out that we would have the same HI teacher! YAY! I was so relieved because I really feel that so much of Harlie's success/failure is dependent on the person in this position. I also found out the county's audiologist has since retired. And they are looking to fill her position.

I also learned that they have not filled the interpreter/instructional aide position. At least, the last I heard they had not. And I really want to meet this person and talk to them before school starts. Now that we are going headstrong with the communication device, this person needs to be aware and on board - and educated on the device so she can help Harlie use it during the day. This person will be beside Harlie most of the day and her success with the device is dependent on this person helping her with it at school.

But that person doesn't exist yet. And there's two weeks before school starts. What if they can't find someone qualified? Do they hire anyone just to get a body in there?

Can you tell I'm slightly stressed about it?

And then tonight, I get an e-mail from her HI teacher telling me that she doesn't think she's going to be at Harlie's school after all. And she doesn't know who will be assigned to Harlie yet. What?!?! I can't tell you how much I HATE to lose her support. She has been awesome with Harlie and I really like her. It truly saddens me to lose her!!!

I can't help but feel that everywhere people are going is more important than the places they're leaving. And I hate to sound negative, but I don't really see any evidence of an existing HI program anymore. And if there's no HI staff there - and there's no HI staff at Harlie's home school just a few houses down my street - then why don't I just send her to our home school with her brother?

I'm really trying hard not to freak out right now.

But, I'm already doubting "our" decision to send her to kindergarten. There just seems to be too much transition and instability right now. Are they scrambling to fill these positions and will the quality of the person be sacrificed for a warm body? Ultimately Harlie will suffer if the county doesn't figure things out.

And who the heck do I talk to about all this? Who's my point of contact? And if I don't send her to kindergarten where would I send her?

The only person left for me to talk to about this would be Harlie's kindergarten teacher. And I'm seeing her tomorrow - but only for a pre-screening with Harlie (something she does for all the students) and I think it's only a 15 minute slot. Certainly no time for discussing all this stuff.

You know, I'm just sad and scared. Everyone I was trusting to help Harlie be all she could be is gone. And can I just say how FREAKING hard and scary it is to have to COUNT on other people to help my child succeed? I am counting on the county to provide HI support so Harlie can learn in a way that works with her hearing impairment. The gap between kids who are hearing and those who are impaired only widens with each passing year - unless you intensify the support as soon as possible.

At this current time I do not feel that the support is intensified.

Nursing Changes
And as if that isn't enough change and instability, Brandy (Harlie's nurse who will be going to school with Harlie most) is pregnant. YAY for her! She is due on Thanksgiving and she's having a girl. At the beginning of her pregnancy, I joked that I thought Harlie needed a little brother or sister (you know, since Brandy is family now). Anyway, while this is wonderful news for her and her husband, it does impact us a bit. Right now the plan is that she will return after a maternity leave. And then I will keep her baby during the day, so she can go with Harlie to school.

But in her absence, we need a nurse to go with Harlie to school. And this scares the crap out of me. I haven't had to find a nurse in over four years!!! I admit - we are spoiled in this area. We have been truly blessed and lucky. But now I have to find someone. That is not an easy task. And it's complicated by the fact that I really don't know when we'll need that person to start (since we don't know when Brandy will have the baby). And if I interview someone now - they could be assigned to another patient and then not want to leave that assignment to work with Harlie, especially since it wouldn't be a permanent position (at least that's the plan). So, I'm going to have to wait until much closer to November till I can really start looking seriously.

And I also know that things don't always go according to plan. And Brandy could have this little girl and decide that maybe she doesn't want to come back to work. And while I sincerely hope that doesn't happen - I would totally understand and respect her decision.

So, needless to say, I'm stressed. More so than I've felt in a really, really long time. BUT - I am trying to keep things in check - because I am really hoping that things will work out. Trying to have faith in the county since they have done well by us so far. Keeping my fingers crossed that these changes will be good when I look back on them later.

Monday Night Update

We had the screening with Harlie's kindergarten teacher today. So, a lot has "changed" since my post from last night.

First - her HI teacher was there and Harlie's main teacher must have realized it would take longer, so we had a longer time slot. And we were able to talk about a lot of this stuff.

Harlie now has an interpreter/instructional aide - and she is someone who has worked with Harlie in the past at her last school. So, she's not a new hire. I guess they had to do a lot of shifting around since the head of the department retired.

And she has an HI teacher, and she said that she is wonderful and will be great with Harlie.

So, it appears that maybe I let my fears get the best of me last night and I don't need to do anything drastic. And there is an HI program, they were just figuring out all the changes. I am normally so much calmer than I was last night. But, I have to say that my emotions are all over the place right now. At this point I just need school to start already so I can get over this "hump."

The screening itself didn't go so well. She wouldn't write her name, or answer questions about what shape was what and barely did the abc's in sign. I should have realized it was doomed from the start...

Both Harlie and Cooper have been fighting some sickness for a couple of weeks. Harlie actually started to get sick right before Tom's reunion and our trip out of town (which I still haven't written about or posted pictures - soon). Harlie went on antibiotics and got better. A few days after the last dose, she started to get sick again. And Cooper's been coughing something terrible for the whole time, too.

They were both at their worst on Sunday (Sunday night was AWFUL and I only got 3 hours of sleep), so first thing Monday morning, I called the pediatrician. They were booked, but squeezed us in at 9:40. We had an appointment with the supply company (who sends a respiratory therapist to our house once a month to see Harlie and check her equipment) at 9:30. And we had to be at Harlie's school at 11am.

So, I called the supply company and told the person who answered that I needed to reschedule our morning appointment for the day. She transferred me to someone's voicemail. I left a detailed message to NOT send the RT at 9:30.

As we were getting in the car to go to the doctor's appointment, my doorbell rings and it is the RT and a trainee from the supply company. Of course, they didn't get my message. When I told the RT, she said that the person I left the message with is on vacation this week. Seriously? That moron sent me to a person's voicemail who is on vacation to deal with rescheduling an appointment for an hour away? Geez. And it didn't help that his voicemail message did NOT say he was out for the week. Grrrr!!!!

I told her we were leaving, she could check Harlie really quick while I got Cooper in the car and then she would have to check the equipment after we left.

Oh, and I forgot to mention that Murphy had a friend sleep over Sunday night and they were running around. And my niece (thank God for Maggie!) came to stay with the boys while Brandy and I took Harlie and Cooper to the doc.

Oh, and I couldn't find one of my flip flops. And that really ticked me off because I am CONSTANTLY picking up everyone else's freaking shoes and putting them away (including my own, of course) and now it's MY damn shoe that's gone missing. Where's the justice I ask???

So, I run and put Cooper in the car and of course they parked in the driveway. Behind me. So I have to go tell the RT to move it. Seriously - the house was CRAZY and this poor new trainee was just looking around. The RT said that she warned the new girl that it was organized chaos. I wish I could agree with that.

Luckily this RT has known us for a long time and is really nice (she's been coming since Harlie was a wee babe) and she was fine with staying after we left to do the equipment check. And while I was running around wrestling Cooper to put his shoes on and continuing to look for mine - I told her to please check Harlie's pulse ox cord which is fraying and probably needs to be replaced.

We finally get in the car at 9:38 - and there is NO way we are going to be at the doc's office in two minutes. So, we're late. Luckily this doc's office is awesome and goes out of their way for us so they were very understanding.

By the time we get back into a room it is 10am and it doesn't look like we're going to be on time for the screening at 11am. So, I ask our nurse if there is any way possible to get us out in time. Which I feel awful asking for since I was LATE.

So, doc looks in Harlie's ear - no big deal. But as soon as she sits up blood is pouring from her ear. This is the second time that's happened after just looking in her ear. I mean, I get that she bleeds easily (since she's on aspirin daily, which is a blood thinner) but what is causing the bleeding? He said he didn't see anything in there and he didn't feel like he scraped her or anything.

So, we wipe her off and with four prescriptions in hand, go running out the door.

We rush home, drop Cooper off with Maggie and the boys and rush to the screening. We were about 10 minutes late for that. I take a deep breath and wait for her teacher. I turn around and look at Harlie and her whole right side of her face is covered in blood. Nice. She continued to bleed for an hour and a half! Which means that her canal was full of blood - and she appeared to not be able to hear a damn thing.

Perfect! UGH!!!!

Which is why the screening didn't go so well. Oh, and she's sick. And her tummy was upset and she had to go potty several times. Those things didn't help.

And she was acting super shy with her teacher. Which I totally understand. There was a sheet and it had a Name: __________ slot and then some shapes and then the alphabet. She saw the alphabet and when we asked her to write her name on the line, she started to write the alphabet on the line.

Then when she was asked "which one is the square" she pointed to the circle. Now - I know how parents can be - but I PROMISE you - she knows her shapes!!!

Her teacher had her move next to her thinking that might help. And when she pointed to a shape and said "what is this" Harlie signed square - but did it under the table. Luckily this teacher is sharp and saw it and told us that she thought she signed it (she doesn't know sign - but has ordered a bunch of signing materials for the class and seems really excited about learning it).

Then, when Harlie signed the alphabet (the letters were not in order) she kept her hand on the table and barely moved her fingers. It was as if she were whispering!!! But in sign!!! It was so interesting to watch! And incredibly frustrating!!!

Luckily her HI teacher was there and she told the teacher that she knew that Harlie knows this stuff. The teacher said that this behavior is completely normal - and I shouldn't worry.

Okay. So, that was that. It was noon and Brandy and I were pooped! It was a crazy morning. Then I took Murphy's friend home, fed Harlie, Brandy and I had lunch, and then I made some phone calls. I tried to get an appointment with a local ENT to check out this bleeding ear situation. But her next available appointment isn't until November 9th. Grrrr. So, I e-mailed her ENT in DC to ask him what he thinks about it. I am just trying to avoid going there (DC) because Harlie would have to miss a whole day of school. So, we'll see what he says and I'll go from there.

Tomorrow we are going to Northern Virginia for Harlie's appointment with her surgeon to see if she can stop wearing that back brace and resume normal activity. My fingers are crossed!!!

Whew! This has been a very long post!!! If you're still reading this - you are a good person.

Thank you!
~Christy