Saturday, January 28, 2012

Murphy's Worries

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.

Wednesday, January 25, 2012

It's always something...

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!

Sunday, January 22, 2012

Tigon Mom

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

Friday, January 20, 2012

No Sleep Study!

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!


Wednesday, January 18, 2012

Sleep Study or No Sleep Study?

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.


Class Bear

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!


Monday, January 16, 2012

First Daisy Meeting!

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!


Friday, January 13, 2012

Family Photos-December 2011

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?!?!


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.

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!

Monday, January 2, 2012

Back to the Grind

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.