Friday, July 31, 2009

Upper GI today

Harlie has an upper GI this morning. Trying to figure out what's causing her vomiting (even though she has a nissen). This is probably her third upper GI. I'm not holding my breath for any answers. Really, it's just to rule some things out.

Gotta go!
Christy

Wednesday, July 29, 2009

I just don't get it.

How in the world can a little girl with cardiac and pulmonary issues - including low oxygen saturations - go the entire day - with NO nap and STILL be awake - with energy, mind you - at 9:07PM??!?!?!?! Oh, and did I mention that she had physical therapy and an outing to the Children's Museum today????

She really makes no sense. Medically speaking, I mean. I'm betting that one of her doctors would tell me she's making up for lost time.

So, my friend Jennifer took her kids and Harlie to the Children's Museum today. She met some of her nurse friends and their kids, too. We joked that there would be enough PICU nurses around should anything go wrong! Anyway, Jennifer said they all had a great time. Here are some pics from the day...



Jennifer's daughter, Kyleigh.




Kyleigh, her brother Austin, and Harlie.


So, while Harlie was on her play date, I had my pureeing lesson with Harlie's feeding therapist, Allison. She basically showed me some tricks and tips. Like knowing when it's the right consistency, and what to add if it isn't, what kind of products to use, what food combinations work well, etc. And she showed me a chart they use there at the feeding clinic for the day patients (the patients that are there every day for several weeks). It was time well spent. I really think it was helpful and I'm really excited about what we'll now be able to introduce to her. I only wish we could have been where we are today six months ago! Then Cooper's baby food experience would have been a lot more enjoyable! But, he probably would have gotten a lot fatter. And based on yesterday's post, he doesn't need any extra fat. So, maybe the timing was good after all.

Today we made pancakes with bananas, syrup and butter (that will be her breakfast, of course), and apples (used a can of fried apples). I am so excited to be able to give her real food for the first time in her life!!! I don't think she shares my level of excitement, though. And the jury's out on whether she can even taste it (I've been told that taste is 80% smell, and we're thinking she's not smelling too much with the trach right now). But who cares? It's REAL food and it's going into her mouth and down her throat and into her belly - the way God intended!!! Can I get an Amen?!

So, I was thinking today about all that Harlie has accomplished in a very short time.

Do you know that it was just May 7th when she swallowed her first official purposeful whole bite? Not even three full months ago? And in that time, she had her third major heart surgery, spent almost two weeks in the cardiac intensive care unit, missed five weeks of feeding therapy, AND got potty trained! Yet she still managed to go from eating grams at a time, to ounces at a time! And I've been told that for each week a child spends in an ICU, it takes them one month to get back to themselves again. So, in her case, that would be two months. Which means she should be back to herself by mid-August. WOW! I just can't tell you how much she amazes me. What an incredibly strong little girl! And she doesn't even complain. Not even a little bit. I am so darn proud of her.

Oh! My Dad had his post-op appointment today and they said he does not need chemo! So, that's great! He just needs to work on gaining some weight back. I know, so many of you wish you had the same problem.

Well, goodnight!
~Christy

Tuesday, July 28, 2009

Speech Therapy

So, we had speech therapy today. She gets a one hour session, once a week. Today I decided to take Murphy with us. Teaching him to sign with her, and to "listen" to her sign, is quite challenging (like when she wants him to move or stop, for example). She is pretty easy to ignore - especially for a 5-year old boy. So, I thought a little instruction by our therapist would help.

To give a little background - these sessions are exhausting for me. I sit there and let the therapist be in charge. Sounds almost relaxing, right? WRONG! To see her try and get Harlie's attention - and then keep it, is frustrating. Harlie's just like any other kid, if she doesn't want to acknowledge what you're saying, she averts her eyes. Kind of hard to show her a new sign if she won't look at you. And then Michelle tries to get Harlie to finish her sentences by anticipating what comes next (like in sequencing an event like taking a bath - first you pour the water in, next you put the baby in, etc.). The whole time I am willing Harlie to cooperate. I sit there and think, "c'mon Harlie, you know that sign. You can do it! SAY IT FOR CRYING OUT LOUD"!

It's the willing her to do what she's supposed to do that sucks the energy right out of me. Today, Michelle tried to get Harlie to tell her who Murphy was. She asked her "Who's this"? Harlie didn't really care to introduce Michelle to her big brother. And that whole little lesson made me start the session in the hole - energy wise. Honestly, I don't know how these therapists have the energy to get through the day, seeing patient after patient.

The rest of the session was more of the same. Murphy's attention span is short, and Harlie's is even shorter. Michelle played a game of bingo with them. That was good, because they had to take turns and it's more structured. And you'd be surprised how many signs you can use playing a game.

But, I gotta tell ya - the thought of teaching all my kids and my family sign language is absolutely overwhelming. And really, I think the word overwhelming is an understatement. It's all fine and good teaching her (tiring, but good). But that's because she knows she needs to learn to tell us what she wants. Murphy? HA! He can talk. Why should he learn? And Cooper? We have to start all over with him. ugh. A simple thing such as saying goodnight. "Murphy, tell Harlie night-night". Murphy says "night-night Harlie" (without signing at the same time) and then I have to say, "Murphy, use your signs while speaking to her". To which he either does, or doesn't. And when he doesn't I have to tell him again to sign while saying night-night to her. And make them go through the whole process again. Oh my goodness. All those words and energy for two lousy stinking words - night night! WHICH WE'VE BEEN SAYING EVERY NIGHT FOR I DON'T KNOW HOW LONG! Holy cow!

Has the energy been sucked out of you yet? Because I would totally understand.

But Michelle said that Harlie is getting more aware of who understands her and who doesn't. So I'm sure she's thinking "what's the point"? So, instead of signing to Murphy to stop or move or whatever she wants to say, she grunts (very loudly I might add) and pushes to get your attention. Although I will say that Harlie will sign "share" - that's one that they certainly use with each other. Not that either of them (or any child under the age of seven) actually understand and practice it. They only know share when the other one's got what they want. But I digress...

While, for the most part, I have found signing "fun" (but really only because it allows me to communicate with my daughter), I can't help but wonder when she'll be able to talk. And I think life will be so much easier... one day.

Changing the subject, I took Cooper to an appointment today. He weighs 22 pounds (Harlie weighs 25). He measured in the 10th percentile for height (meaning that 90% are taller than him) and the 95th percentile for weight (meaning that 5% are fatter than him). So, by my measurements, he's ROUND. Nice.

Goodnight!
~Christy

Sunday, July 26, 2009

Family outing

On Saturday we went to Zach's 5th birthday party at Pump it Up.

Donna and Aaron, and the birthday boy.


We all went and the kids had a GREAT time! You should have seen Harlie. She was hilarious! She was practically running from one thing to another. She couldn't get enough of it. And those slides are pretty big and you go fast! Tom took her a couple of times, and I took her a couple of times.



Donna took her once and said that when they got to the top, Harlie wouldn't wait for her and just slid down by herself! I was so shocked! She really did great and I think it was a great work out for her. I know that after going through the obstacle course with her, I was tired. It was hard work! Of course I barely saw Murphy. He was just a blur running around with all the other kids.

And Donna's nieces were so darn sweet! They realized that she signed and immediately tried to remember what they knew so they could sign to her. Then they kept asking me how you say things so they could sign with her. It was really very heartwarming.

Then after play time, they went into a party room for cake. Harlie just followed all the other kids in and sat right down like she's done it a thousand times. She didn't know anyone near her, but she didn't seem to care. She's on the left, third from the far end. I thought that she would look for Murphy, but didn't. In the group photo, she did look for him and sat down next to him. So cute! Anyway, Murphy is on the left, right in front, half way in the picture.



They passed out juice boxes and I was anxious to see if she would drink any since she could see everyone else doing it. She did try, but the straw was just too small for her lips to close around it. Oh well. In time, I'm sure. I tried to see if she would try the icing from the cake, but she clearly did not want any part of that.

Here are some other pictures that Donna got for me (my camera battery died!)






Our big news here is that I think I can say that Harlie is pretty much potty trained. I can't believe it. She went all weekend with only ONE accident! Even at the birthday party, she told me she needed to go and went (okay, like three times, which is a little ridiculous in my opinion, but beggars can't be choosers). I assume, like with all things Harlie that we will take one step forward and two steps back. Or the other way around. Either way, we'll just have to see how things go. I did make an appointment for her to see her general surgeon in DC. The one who did her bum surgery. He told me then that he didn't know if that one surgery would do the trick or not. So, maybe he can shed some light on what I can expect as far as her bowel movements go. I got lucky and we got an appointment for three weeks from now. Hopefully, that will go well with no news of more surgery (on that particular body part).

After the party we all came home for naps and then we went to the end of our street for a little block party. It was a lot of fun. Although quite challenging to sit and talk to other adults when you have to get up and chase the little ones around. Harlie went potty about SEVEN times during the couple of hours we were there. I think she likes the whole routine, the clapping, and washing her hands. Of course, she is still on a diuretic (which makes you pee a lot), so I'm sure that has something to do with that. I'm hoping that her cardiologist will take her off it completely when we see him again (in less than two weeks).

The kids had all their big wheels out (we were in a cul de sac) and were riding all over. At one point I turned around and saw Harlie chasing a kid on big wheel. It was definitely the closest she's ever come to running. It was so cute I almost cried right there! I am just so thankful for all that she can do! I'm betting that feeling will never go away.

Well, that's it for now.
Thanks!
Christy

Thursday, July 23, 2009

Low Tone

Harlie had another great moment in feeding yesterday. I gave her that squirt bottle and she put her lips around the straw and ... sucked the juice into her mouth... and then.... swallowed it!!!! She coughed a little, but that wasn't surprising. I mean, she's NEVER sucked before, so she probably didn't have much of a clue about what was going to happen. But the next time, she sucked the juice and then swallowed it with no coughing. This really is so unbelievable. I had NO idea that we would be where we are now. NO idea at all!

And she likes her feedings now. And it is fun to feed her for a change. All those millions of times that I hated it, dreaded it, would have paid someone to do it for me if we had the money. I am just so incredibly happy that we are here! And now I have to learn about pureeing foods for her to eat (instead of giving her baby foods). So, I'm going to have a pureeing lesson with our feeding therapist next week.

Harlie had physical therapy yesterday (Wednesday). I spoke to Traci a bit about her low tone and loose joints and ligaments. At the risk of sounding completely stupid, I really didn't realize that Harlie had this issue until fairly recently. To be honest, it's just the way she is, and I was/am used to her and don't know her any other way. But picking up other children Harlie's age helped me realize the difference in her. The other realization came when, just recently, while walking, she wants to go one way and I want her to go another. Most times, you just tug them a little while holding their hand, right? Well, if you tug on her arm, it feels like it's going to come out of it's socket. It's weird. It's kind of gross. She just feels so fragile. And now that I see it, it's pretty obvious and I can't believe I didn't see it for so long.

Anyway, Traci said that she will always be this way, but that we need to help her build her strength to compensate for the loose joints. She also said that swimming or gymnastics would be a good thing for her. I guess the flexibility that comes with having loose joints can work in their favor if they can build the strength. Well, swimming's out, obviously.

So, that leaves gymnastics. And Harlie went to the Little Gym with her friend Kyleigh, Jennifer (Kyleigh's mom) and Brandy earlier this week. They said she loved it! They said that she did some somersaults and hung from a bar by her hands all by herself! Wow! And they said that she ran around with her arms out like an airplane with the other kids and loved that. And it made me realize that I really need to get that girl in some classes with other kids her age! She really needs the socialization - for so many reasons! So, I'm going to see what I can do to get her in some gym classes.

Well, that's it for tonight.

Tuesday, July 21, 2009

Parenting

Harlie is continuing to do great with her feedings. It is SO different to be able to give her a spoonful and see her eat it - just like a normal kid. I am just as excited as I was last night. But for some reason I lack the energy to show it appropriately.

It's probably because Murphy took a lot of my energy today. I took the boys to the gym with me and when I picked them up, Murphy didn't have his shoes on. They wear socks only in that room. Anyway, we were in the lobby of the gym and I told Murphy to put his shoes on. He made the least amount of effort possible, and whined that he couldn't do it. The problem is that he likes his crocs, and he's gotten lazy at putting on tennis shoes. I've helped him, and shown him how to put on his $%#$@#$ tennis shoes more times than I care to admit. I guess that seals the deal - he's no genius. Anyway, I told him we weren't leaving until he put on his shoes. I guess he didn't want to leave. My threat wasn't threatening enough. Yeah, 25 $%#$^$ minutes later, and he didn't even have A shoe on!!!! Cooper was hungry and tired and it was getting past his naptime. The people that work there at the front desk were watching the whole thing. Probably judging me as a mom. It was a really fun moment.

I told him that if I helped him put on his shoes, he was in BIG trouble. You know, the problem was his whole "not trying" attitude. I can't stand it! He was putting absolutely NO effort into it and I knew that we were never going to leave. So, yes, I helped him. Well, that's not true. I put them on for him - very roughly. And then tied them as tight as I possibly could. He didn't seem to notice. Ugh.

Anyway, he was sent to his room to sit on his bed and do nothing else but think about how he didn't try (how long do you think he thought about that?). I fed Cooper, put him in bed and ate breakfast so I could cool down. When I went to check on Murphy he was sleeping. When he woke up I made him go and get his shoes. I told him he could not wear his crocs again, until he could successfully put on his own tennis shoes. Then I made him put on his tennis shoes (which he did in less than one minute, now that we were home and not in public). Then I made him untie them and take them off. Then I made him put them right back on. And we repeated this numerous times. And he was not allowed to watch one minute of TV. Later, he had to practice again.

By the end of the day, he put on his own shoes without an issue. BUT AT WHAT COST TO ME???? Well, I hope I did the right thing. I didn't beat him, which in itself should speak volumes for me. Why does spanking have to be so taboo now a days? I remember my parents making me go and get a switch. Granted that only happened, like, once I think. (What can I say, I was a good kid). But still... Parenting is so freaking HARD!

And speaking of that... tonight I was reading Harlie some books at bedtime. I went to read the third one and she only wanted to look at the first page. Then she threw the book across the room. I - being shocked and appalled - told her we don't throw books and I won't read any more books to her if she was going to be rude like that. To which she signed "night-night" to me and promptly laid down on her bed and rolled over. Well, I guess I told her!

Good night and good luck. To all of us parents.
~Christy

Monday, July 20, 2009

I'm so excited!

Harlie did GREAT during feeding therapy today. Just GREAT!! She had yogurt and thickened juice - and ate a total of 1.2 ounces!!!! HOLY COW!!! That's the most she's ever eaten!

Allison (her therapist) put the thickened juice in a squirt bottle. Here's what it looks like:



She also put yogurt in one, too. The squirt bottle helps us get the placement we want in her mouth. And then she had yogurt in a cup to give her on a spoon. We use a kitchen timer so Harlie knows that there is a start and end time, and she gets to press the button. We were doing about 12 to 15 minute sessions. Allison upped her time to 18 minutes. And she did great! Everything about this session was so exciting!

And close to the end of the session, Allison gave her a spoonful (a regular baby spoon, too - not that EZ spoon I mentioned earlier) of yogurt and Harlie closed her lips around the spoon and was able to take all the food off the spoon, and then swallow it! WOW!

The reason why this is so fantastic is because her lips are getting stronger. She used to not be able to do that. Since she's never eaten by mouth, all the muscles and workings that we take for granted are weak and uncoordinated for her. The fact that she could get her lips closed around the spoon is FANTASTIC! And then with food being in the middle of her mouth - for her to then swallow it is HUGE!!! We used to have to use the flat spoon and scrape the insides of her cheeks and teeth to get her to be able to swallow it. You would not believe all the muscles that have to work together to get the food from the front of your mouth, to the back and then to swallow. Seriously.

Another reason why this is so fantastic is because now we can let her feed herself some bites. What a difference this will make at dinner time! I was so excited to see what would happen. So, I put some yogurt in a little bowl and gave her a regular baby spoon and she scooped up some yogurt, put it in her mouth, and ate it. Just like a regular kid!!!! WOOHOO!!! She ate all of the yogurt in the bowl!!!

Allison was really excited about our session today, too. She said that it looks like we're going to start working on volume now. AND - she is going to up Harlie's sessions to two times per week!!! This really is so incredibly exciting for me - I just can't tell you!!!!

Of course I had to ask about the intensive feeding program. It is a 6 or 8 week program where you go there five days a week and spend most of the day there. She gets fed there throughout the day. It is a hell of a commitment, that's for sure. I really don't know how we're going to manage when that time comes, but like so many things in Harlie's life - we'll cross that bridge when the time comes. All I know at this time is that's where we're headed when the time is right for her. Allison told me that there is about a three month wait. But, she wants to up her sessions for now and see what happens. Plus, with Harlie's upcoming spinal fusion and jaw reconstruction, it's probably best if we wait till all that is behind us.

All we have to do is get her to eat a few ounces several times a day and we could cut back one tube feeding per day!!! Can you imagine??? I can't think too far ahead, but as Allison said, "This was such a hopeful session."

Well, that's our exciting news. Now it's time to go and relax for a bit.

Thanks!
Christy

Sunday, July 19, 2009

Video

Well, it looks like Harlie is a little sick. She's been running a fever for a few days. She's on antibiotics now. But, that is causing a whole other issue, of course. Last week I tried to avoid the antibiotic route. She's just been on so many, it just kills me to keep giving them to her. I might have to see if the pharmacy can print out a list of all the antibiotics she's been on. Just for shits and giggles, as my dad would say.

Anyway, on Thursday, when her symptoms got worse, I started the meds. She seemed okay, even when she had a fever. But today was the day that the meds started her GI problems. I really dislike antibiotics and what they do to her (other than making her better most of the time, of course!) Anyway, she was in so much pain (diaper rash) after her bath that she actually let me cuddle with her. She really isn't that kind of girl, so I enjoyed it (not that I want her to be in pain, of course). She some how comforts herself and does not want a special anything or loving of any kind. Sometimes it kills me, but I know that's probably the best for her considering the kind of life she has. She is very independent in many ways.

Well, here is a video from the beginning of June, right before her heart surgery, that I've been wanting to post. I finally just got around to uploading it. I think it shows a lot of her funny mannerisms. For some reason, I really enjoy this clip of her and thought maybe you would, too. She's playing with goldfish crackers and a magnifying glass.

video

Wednesday, July 15, 2009

Testing with the school system

So, we had Harlie's "testing" with the school system today. She was seen by a speech therapist and a physical therapist. The speech therapist had a flip chart with some pictures on it and asked Harlie which picture was the bird, the ball, etc. At one point she asked her which was the spoon. Yeah, she didn't know that one. I had to tell her that I haven't really focused on teaching her eating utensils yet. And it doesn't help that the spoon we use for her feeding trials does not look anything like a regular spoon. We use an EZ spoon.

Anyway, the physical therapist asked me a bunch of questions about her heart and her spine, what she can do, what she can't, her endurance, her oxygen saturation numbers, etc. She said that Harlie might not qualify for physical therapy through the school system. She can get herself around okay. Her only issues (physically, I mean) are endurance (heart defects and oxygen deprivation make her tire quickly), spinal problems, and low tone. So, why would she qualify??? Crazy, huh? But she said that the medical standards for needing physical therapy and the school standards for needing it are two entirely different things.

I'm not really that surprised as far as her physical condition goes. But, I thought for sure, of course she would qualify for speech therapy. I mean, the girl can't talk!!!! However, there is some definition of qualification - like the child has to be 30% delayed or more in order to qualify (and I don't know if this is even correct, but it's an example at least). And, from the way she was talking, it is possible that Harlie might NOT qualify!!! I find this crazy myself. In the end, I really don't think it matters that much. I will continue her therapies as is, privately, through our insurance and Medicaid. So, it's not like she won't get therapy. I just think it is crazy. So, she's not 30% delayed - now. But we can all see that she will be soon if she doesn't receive therapy. So is their plan to wait until she's delayed to then try and catch her up again? Why not be proactive?

And, really, what difference does it make that she can point to the bird or the ball on a chart? I mean, that's hardly "communicating". That's just answering direct questions. That has nothing to do with WHY she needs speech therapy. Really, the more I'm thinking about it, the more questions I have! What's the connection between developmentally behind and speech therapy?? Well, I understand there's a connection in many cases - but it's not that black and white. Harlie can learn - if you teach her. She's proven that. Well, she needs to be taught how to talk. And the reasons why she can't talk - are all medical. Not developmental. Clearly that can't be a reason for her to NOT qualify!! Right?!?!?!

Well, her eligibility meeting is in one month. And I guess I'll have to go prepared, ready to advocate for my daughter. I'm really hoping that they realize her medical need for speech therapy. I'm thinking that it will make getting her whatever she requires come Kindergarten-time a little easier if she gets in the system now. At this point we have no idea if she'll be able to talk (or be understood when she does talk) by then. Who knows? Guess I'll be getting an education myself this month. Anyone have any experience to share? I would love to hear it!

Thanks,
Christy

Tuesday, July 14, 2009

Busy Day

Today was the first week day I haven't had a nurse in a very long while. Brandy usually works four days a week and Jennifer works the day that Brandy has off. They've coordinated those days so that for the past few months or so, I've had their help Monday through Friday. Aren't they great?

Well, today Brandy needed the day off and Jennifer couldn't work. Which was fine. Really! I've kind of been looking forward to it. It's days like today - that while they completely wear me out - make me feel more "normal." Of course, I still needed help. Thank you very much Nancy, Kelly and Charlie! So, here's what our day was like:

6:15am - Cooper wakes up. Tom's at the gym. I get up and feed him and start to pack the bags for the day.

7:30am - Start Harlie's breathing treatments. I will be SO glad when I don't have to give her anymore breathing treatments! I've been giving her two breathing treatment meds, twice a day (sometimes every four hours) for 2+ years! But I digress...I take a shower and get ready.

8:00am - Cooper wakes Harlie up by crawling into her room, standing up next to the crib and yelling at her. She wakes up with a smile (definitely NOT the reaction we get when we wake her up).

8:00am - 8:30am - do "normal" routine for Harlie, while stopping constantly to tend to Cooper. Harlie uses the potty twice. Potty training is going great! Murphy gets dressed in his swimsuit for swimming lessons.

8:30am - 9:10am - I feed Harlie the first half of her feeding plus her meds. Huge pooping fiasco (Harlie). And boy is Cooper FAST! It is a miracle that he did not get "dirty" if you know what I mean. Potty training sucks! Especially for a girl that doesn't look like she can control her bowels.

9:15am - I make three trips to the car - then go and get the kids. Throw three kids in the car, get them buckled in and drive to Murphy's swimming lessons.

9:30am - Drop Murphy off at swimming lessons. Finish Harlie's feeding. Then leave to go to Nancy's house (my brother's wife, who, luckily, lives just a mile down the road from Murphy's lessons).

9:45am - Run Cooper into Nancy's. Give her his bottle, bed, portable high chair seat, diaper bag, and him. Run back to pick up Murphy from his lessons.

10:00am - Pick Murphy up, then put the kids back in the car and go back to Nancy's house. Drop Murphy off to hang out with his cousins.

10:15am - Take Harlie to speech therapy.

10:30am - 11:30am - Sit in speech therapy with Harlie. Give Harlie her water flush (goes in the g-tube). Harlie goes to the potty - twice! Potty training is going great!

11:45am - Go to Nancy's to pick up the boys. Then re-load the car with all the gear and all the kids.

12:30pm - Come home. Feed Cooper and put him in crib for a nap. He doesn't sleep and cries off and on for 45 minutes. While he's crying - but perfectly safe - I feed Harlie and myself. Harlie has more pooping issues. Potty training sucks!

1:15pm - Feed Cooper - again (he must be going through a growing spurt). And put him back in bed. This time he goes to sleep. Ahhh.

1:30pm - Put Harlie down for her nap. I finally get Murphy to eat his lunch.

2:00pm - 3:00pm - I give Harlie her water flush (2pm). Vacuum downstairs and straighten up. Then give Harlie her 3pm meds and first half of her feeding.

3:00pm - 4:00pm - Cooper wakes up, I feed him again. He eats a big piece of chicken and a whole bunch of other stuff. Definitely going through a growth spurt! I also work with Murphy on an activity book. He tells me he would rather watch tv. Dr. Phil is on answering all our parenting questions. None of them are my questions. Shucks. I give Harlie the rest of her feeding, and get her up from her nap. She goes potty. She's got the peeing thing down pat. If only the rest of it could be that easy.

4:00pm - 5:30pm - Murphy goes outside to play. Ahhhh...

5:00pm - Give Harlie her water flush. And do a feeding trial (with Cooper crawling all around my legs). She eats 19 grams and overall, does great.

5:45pm - Tom comes home and we get dinner on the table.

I can't write any more detail. And I'm sure you don't want to read anymore. I bet that was torture! Sorry about that. But, I'm not deleting it now that I've spend the last 15 minutes typing it.

But, we did manage to take Harlie's front panel of her crib off so she can crawl in and out like a big girl. I've tossed this back and forth in my mind for a while. Heck, Murphy had just turned two when we put him in a big bed - and he went straight from the crib to a twin bed - with no problems. I would have rather done the same for Harlie. But with her being connected to stuff, I just haven't been comfortable. But now that she's off the night feedings, she's only on her trach collar and pulse ox monitor, so I think it will be okay. She knows she's wearing the trach collar and that she can't walk around like that. So, I don't think it will be a major problem. We'll just have to see. And with us having night nursing, I thought now was as good of a time as any. So, here it is:




If you click on the picture, it should get larger. She's getting her hair cut tomorrow! It is too long and it's getting in the way when we change her trach ties. I just hope we don't lose her curls!







Tomorrow will be worse busy-wise - but I'll have Jennifer's help. Harlie has her "testing" with the County for her transition into the school system. From birth to age three, her services are through Early Intervention. Then the child goes into the school system to receive services. I haven't even begun to learn what I need to. I'll do that soon, though. All I know is that we go to an elementary school for "testing" tomorrow. I have no idea what to expect. I'm thinking that it's more of an evaluation than actual testing. I mean, it's not like a pass or fail - at least I don't think it is. I think they just need to assess where she is so they know where she needs to go and what services she needs, etc. Either way, I'm still nervous. I just don't like new people coming in and studying her - it just feels weird. And I've heard some horror stories, that's for sure. It seems that most moms really have to fight to get their children what they need in the school system. I'm trying to keep an open mind, but sometimes that's hard. I just hope that she shows them what she knows. Kids don't always cooperate under pressure. Most people can relate to the "say bye-bye" and the kid says "bye-bye" the second the person is out of ear shot. Now multiply that times a thousand and have that moment be the key to her future! Okay, so maybe not her entire future. But, still.

Well, it's late. More later!
~Christy

Monday, July 13, 2009

Surprise!

On Saturday night, my friend Jennifer was having a cookout. She had written it in my calendar a few weeks ago. And a couple of weeks before the cookout, Brandy offered to work a Saturday night (the same one as the cookout). I said, "wow, thanks, that works out great because that's Jennifer's cookout." I arranged for a sitter for the boys. Well, a few days before the cookout my neighbor (Cami) asked me if one of my nieces could watch her kids because her and her husband wanted to go out. I told her I'd get someone for her. Then my friend Donna told me that her and her husband had gotten a sitter and were going to go out and we should call them when we left Jennifer's. Then my friend Heather called and asked if we wanted to go out with her and her husband, but I had to tell her we had plans. I said that I wished we could all go out together since everyone had gotten sitters! What a coincidence!

So, Tom and I leave to go to Jennifer's cookout. We pull in front of her house and there were no other cars. Tom said that it looked like we were the first ones there. We walked around to her backyard and when I looked up - there was EVERYONE!!! It was a surprise birthday party - for me! My birthday is on Christmas day, so Jennifer decided that I should have a summer, surprise half birthday party. It was so much fun! Although I have to admit that I feel a little silly that she - and all my friends - went to all the trouble to do that! I don't think "silly" is the right word, but I can't think of a better fitting one right now. All my friends and family already do so much for me! And I know that no matter what, they will never know how appreciative I really am.

Here are some pictures from the night. Although I'm mad because I didn't get a picture of everyone there. I should have asked my friend Alisha to take over photo duty. She does a much better job.

Lindsay, Jennifer, Me, Heather, Marcy and Donna


The cake, which was beautiful (the picture doesn't do it justice)


Tom and I


Donna, Jennifer, Me and Brandy


Nancy, Me and Bruce (my brother and his wife)


Me and Jennifer


Lindsay


Me and Donna


Heather and Marcy


Donna and Aaron


I really am so incredibly lucky - in so many ways. I couldn't ask for a better group of friends to love and care about me and my family. Thank you Jennifer and Jeff, Heather and Neal, Mike and Marcy, Donna and Aaron, Todd and Lindsay, Cami and MIke, Alisha and Casey, Bill and Meredith, Bruce and Nancy, my Mom, and Brandy!!!

~Christy

PS - My Dad got to go home today! I know he and my Mom are so happy. Hospital stays are long and very tiring for all involved. He'll recover so much quicker in his own space with no vital checks every several hours. And now he gets to eat again! Thanks for all your thoughts and prayers for him!

Sunday, July 12, 2009

Guess what?

She stayed dry all day yesterday! She only had one accident - and it really wasn't her fault. She had a coughing fit and she just couldn't hold it. But then went right on the potty and finished.

She SO knows what she's doing! I can't wait to see how today goes. But right now, I'm being a bad mommy and letting her sleep in. Yes, it's 10am and she's still sleeping. Is she a teenager at heart, or what?

I guess I should go wake her.

More later!
~Christy

Saturday, July 11, 2009

How's Potty Training Going?

GREAT! Just absolutely, positively GREAT!

We struggled for a little while (who doesn't right?). She would hold it for hours asking us to put a diaper on her so she could go. But we tried to stay strong and kept telling her to go on the potty. That was just last week (or the week before? I can't remember).

This past week Brandy put her down for her nap. Well during her time in bed, Brandy said that she stared grunting and making all kinds of noises (more so than usual). So she went up to check on her. As soon as she walked into Harlie's room, Harlie signed "potty" and when Brandy put her on the potty - she went! WOW! I was wondering how we were going to tackle the fact that she can't tell us potty while she's in bed. I guess she'll let us know somehow.

Anyway, she has stayed dry ALL DAY today. I put big girl underwear on her (it's size 2T-3T - the smallest I could find and they're still a bit baggy on her) at 8am today and it is now 1:30pm and she's gone on the potty all day!!!

We were a bit concerned about her going "big" potty, if you know what I mean. She had her bum repair right after her first birthday and her surgeon told us that he didn't know if that repair would totally do the trick. Background: her anus was located too close to her girly parts - and the muscle wasn't around it like it was supposed to be. He said that she might have to have another surgery in a few years. To be honest, we were supposed to go back for a follow-up (like a year go) but haven't because...well, we've been a little busy, and I haven't really noticed any problems. So, if she can continue to make it to the potty okay (like she did today - woohoo!), I guess she's fine!

I am just so thrilled! I had no idea she could be potty trained by now. I just had to share our good news.

Thanks,
Christy

Thursday, July 9, 2009

Quick Updates

Wow! Where has the week gone?

My Dad is doing well, considering. I feel so bad for him because he has not been able to eat anything AT ALL since early in the day on Sunday! The only thing they will let him have is ice chips. Yum! Poor guy. Hopefully soon things will start to wake up and start moving for him so he can eat again. They removed about 14 inches from his colon, so I guess you can't go rushing things around.

The biopsy results came back and the tumor was malignant. But it was just entering stage two, it was in the wall of the colon just a little, and it had not invaded any lymph nodes. So all that is good. The hospital has a cancer committee composed of all the different specialties that get involved and they will review his case and present their recommendation/options. That will happen in about two weeks I think.

Murphy has been taking swimming lessons all week (and it will continue next week). I am so happy to say that he is LOVING it! When we went to the pool on July 3rd he did not want to get in the big pool. And when he did, he only hung out on the steps. But, he is a completely different child now! He even told his instructor today that he wanted to jump in the deep end of the pool! I am so proud of him! I'll have pictures from our fun day on Wednesday soon.

Harlie had speech therapy on Tuesday. She put on her PMV (speaking valve) and wore it for about 6-9 minutes or so. Her therapist ended up being the one to take it off because Harlie was breathing very hard while wearing it. The struggle to get her to tolerate the PMV is growing tiresome. Sometimes I can feel myself wearing down on some of the battles. I have to redirect our efforts and change things up a little. Right now we're focusing on potty training.

We had another follow up appointment from her heart surgery. This time it was with her local cardiologist here in Richmond. They did another Echo (ultrasound of her heart). For the most part, things looked good. The only glitch is that he saw some leakage/regurgitation that he has not seen before. Basically, as her heart pumps the blood out to her body, some of the blood comes back in. He said a little bit is okay. So, we will go back for another Echo in a month. Hopefully this will not become a problem. We didn't talk about what it means if it gets worse. He didn't seem overly worried, so I'm not - yet.

Well, that's it for tonight.
~Christy

Monday, July 6, 2009

Busy Monday

Harlie had feeding therapy today for the first time since the end of May. And we got our original occupational therapist back! YAY! Allison started with us when Harlie was just a few months old. Last summer she went to work in the clinic at Children's here in Richmond. And it finally worked out that she had a slot open for Harlie.

Overall, Harlie did really well during therapy today. Allison said that she was excited about what she saw today. And she gave me some pointers on how I should manage Harlie's behavioral issues during therapy at home. Normally we weigh the food, the drink and her bib - before and after feeding therapy. That way we can see how much she's actually swallowing. Today she ate 9 grams (which is less than a half an ounce). I think some of my problem is that I wanted her to eat something measurable. And when she did, I wanted her to eat more the next time. I felt so much pressure to start to see her volume increase. But Allison said that if we work on her skills to eat that the volume will come naturally. So, I'm not going to weigh everything for a week, and then I'll start to spot weigh - to take some of the pressure off. I am sure that in some way Harlie could feel the pressure from me. So, hopefully that will help me relax a bit, which hopefully will mean better feeding sessions.

Murphy started swimming lessons today. He's already told me numerous times that he doesn't want to go back. We told him it's important that he knows how to swim. To which he replied, "But I already know how to swim"! Nice try.

You might remember that he had a week of sports camp at the YMCA a couple of weeks ago. He was not a fan. And barely participated. Well, last week, every time we went to the gym (for me to work out and for him and Cooper to play) he would sing from the backseat, "YAY, no more sports camp"!!!

And then when we left the gym this morning to go to swim lessons I asked him if he had fun playing. He told me that there was a boy playing with a blue car and he wanted to play with it, too. He said that the teacher made the boy share the toy with Murphy. Then he told me "but sharing was not my idea. I wanted him to give it to me". Nice. Ugh - sharing. That has got to be one of the hardest concepts for a kid to learn.

On to my Dad... a couple of weeks ago he went to his doctor and told him that he had no energy and that he was getting concerned that he wasn't gaining his weight back. So, they ran some tests and did a colonoscopy. They found a tumor and scheduled surgery - which was today. He did very well. They removed the tumor and will biopsy it. We should know the results Wednesday or Thursday.

There was some concern about his gall bladder, but during the surgery, the surgeon decided to leave it alone. My Mom said he already walked around a bit today, which is great. He just can't eat anything for a while, and then will only be able to eat liquids. Then I think on Thursday he can start to eat solids again. Crazy! He said he was starving when I talked to him tonight. He sounded great, though. So, hopefully this will give him his energy and appetite back. I think they were thinking he would be in the hospital until Saturday.

Well, that's it for tonight. Please keep your fingers crossed that the results of the biopsy will be good.

Thanks,
Christy

Sunday, July 5, 2009

Lots of pictures

On Saturday morning, my brother Bruce and his wife, Nancy offered to take Cooper for a few hours so Tom and I could take Murphy out on the jet ski. Brandy was here with Harlie, so it was perfect. Good bonding time with Murphy doesn't come often, so we jumped at the chance.

Here's Tom and Murphy taking a swim break.



Me on the jet ski... (a rare occurrence)



Then after we got back from the river, we all loaded up and went to the pool. Cooper was a little fish. He couldn't get enough of the water. And he liked putting his face in. The pool has these huge slides and Harlie kept on signing "slide" which I, of course, can NOT let her do. So hard to explain to her! And just in case you're wondering - I checked with Harlie's cardiac nurse practitioner to make sure that she could go in the pool water with her incision. She said her incision looked great, so she could go. Not that much of her incision gets in the water since she can only go in to her waist or so. But still... And then, of course, Murphy - has NO interest in the pool or the slide. Nice.

My little stud muffin hanging out by the pool.







Harlie and Brandy.



Me and Tom.



Harlie posing for me at the pool.



After the pool, we went over to Bruce and Nancy's house for a cookout.

One of my favorites of Harlie and Tom together.



Harlie pretending to drink from Murphy's juice box.



Murphy after licking the icing off a cupcake. The Joker from Batman comes to mind...



My Mom (Nana) and Harlie.







It was a VERY busy, fun day. Lots of good family time. I hope you all had a wonderful weekend as well. Happy 4th!!!!

Wednesday, July 1, 2009

Eating corn

Last night we were eating dinner (which included corn on the cob) and Harlie signed "down." So I let her get down. She came back a few minutes later and put a fake ear of corn on the table and then wanted back up in her seat to join the rest of us. Eating our corn.







Sometimes I wonder what goes through her mind. And I am so appreciative of the moments that she makes her thoughts so clear to me. She saw us eating our corn. Remembered that she has a piece of fake corn. Asks to get down so she can go and get it. Goes to the fake food bin in the playroom and finds it. Brings it back to the table so she can be just like us. Eating corn. Funny. And sad. At the exact same time. Oh, how I wish she could eat by mouth...