9.22.11

Aimee started school last Thursday and is currently going 2 days a week for 2 1/2 hours.

Here she is ready to head to school with her new backpack. She was very excited.

And actually she was very excited and happy almost that whole first day.

By the end of class she was wiped out!

She has been doing pretty well in the classes. Only sleeping about 1/4-1/3 of the time. The other kids love her and it is so sweet to see them bring her toys and hold her hand. There is one little girl in class that is especially enamored with her. She even cried this morning when she got to class and Aimee wasn't there yet! :) So, even though she doesn't know it, Aimee has friends already. 

I haven't left her alone there yet, but tomorrow we are going in to meet with the school nurse and teacher to develop a nursing plan for her. If nothing else, once little baby brother comes, I will plan on leaving her at school by herself. 

I am still so shocked at what they feed the kids in class though. I suppose the most shocking part is that the teacher thinks it is healthy. The school provided prune chocolate muffins for breakfast this morning, but the teacher said she didn't think those were any good, so she pulled out leftover pizza and fed that to them instead. Her comment to me when she did it was that so many kids don't get good food at home, so she tries to make sure they eat nutritious things at school. Huh. Interesting. 

Monday Aimee and I went in for an appointment with the Endocrinology clinic. I took my camera along to show you what a day at the hospital is like, but the battery died when we got there. Undeterred, I pulled out my phone and took some pictures of a questionable quality. However, then I managed to smash my phone in the cargo door of our tahoe while putting the wheel chair back. Sigh...if I am able to recover the photos, I will be sure to post and let you have a more visual experience of Aimee's day there. For now, you'll have to imagine it for yourself.

We had this appointment to be sure that she had no additional symptoms of early puberty. After visual examinations, they sent us over to radiology for a bone age x-ray. This is simply an x-ray of her hand to see if her growth plates are appropriate for her age. (Don't worry, baby and I stayed in the hallway when her x-ray was taken) We then got the results back that her bone age is normal (or close enough to normal). However, they cautioned us that most likely Aimee will begin puberty too early and will need to be given hormone shots to stop it. She is at a high risk for this because of her seizures, high palate and other neurological abnormalities. We will just watch out for symptoms and take her back to this department if we notice anything unusual before the age of 8. Which means, one department we don't have to go back to for awhile! Yipee!

Side note: Aimee has been having more seizures over this past week that she was before. She has had about one every day and a few longish ones. I was really hoping to keep her medication the same until getting the sleep study results and am now debating on if we should call Neurology to request an increase.

9.15.11

Aimee's sleep study was last Friday night. We drove down to the Overlake Hospital in Bellevue where Children's has a Sleep Clinic. We bunked down for the night in a cozy little room and got Aimee all set in her pajamas and night time shoes. Then came the wires. And the belts. And the microphones. And the oxygen tube. And the sensors. And the tape. Ect. Ick. Aimee managed to fall asleep fairly quickly when we rolled her onto her stomach. Unfortunately, she was only allowed to sleep that way for the first hour. After that, she was onto her back. I couldn't sleep at all with her like that. She would fall asleep after awhile, but then wake up choking on her saliva. She also just breathes weirder on her back. Either way, she got a few more hours in altogether on her back. All that to say... it was not relaxing. The clinic was really nice though and they definitely try their best to take care of families.

We will get results from the study on October 18th, when we meet with the doctor down in Bellevue. Apparently they do quite an in depth analysis, so it takes some time to put the information together. Now that we have done the test, I'm not expecting any resulting information. It is just so disappointing to go to follow up appointments expecting answers and walking away with nothing. We'll see if not expecting answers does any better. :)

We've been using Aimee's bath chair as a place for her to sit lately (even though it specifically says to only use it in the bath, no idea why). It definitely isn't the best for support and positioning, but I just can't get the wheelchair in very easily by myself until we get a ramp into the house. Hoping that this is going to happen very soon though! (Isn't it cute how she sits with her feet up on the chair)

Today was Aimee's first day of school. I have so much to say about it, but I'll have to save it for my next post.

9.9.11

Last Monday Aimee and I met with the GI and GI Nutrition departments. At GI we discussed the problems Aimee has been having with constipation and the dietary changes that I had attempted to use to correct it. Everything I tried (doubling water intake, increasing fiber, adding prune juice, ect) worked for a few days, but she would just end up right back where we started, which was having a solid waste diaper every 2 weeks. The GI doctor feels that it is not a dietary issue for her, but rather her low muscle tone is not allowing her to push out normal waste. They gave us a prescription for a laxative, which would soften it to the point that her body could handle it. After 1 week on the prescription, she has not only become regular but has been able to expel well over 4 pounds in excess waste (so far, she just had another 1 pounder this afternoon, so we'll see when it ends!). Eek. I knew she was backed up, because her abdomen was hard and full of major lumps, but I didn't realize how far back. Very thankful that we have decided to go this route. Poor girl!

They also caterized her excess granular tissue (around the g-tube) with silver nitrate. We have been using steroid creams to try to keep it under control, but her body is working too hard at it and we have to keep burning off the excess.

We then met with the Nutritionist. Before the loss in weight due to expelling waste, she had already lost a couple of pounds. It looked really bad on her charts, because she has grown so tall over the last few months that her BMI percentile dropped from 50 down to 15. I am hoping by increasing her daily calorie intake from 650 to about 850 we will see her increase back to average. The Nutritionist recommended adding heavy cream to her blended diet, but I decided to go with peanut butter. I am trying to keep her diet to items that she would actually eat. I don't think I would normally be giving her a cup of heavy cream to drink! :)

We have been working on increasing her oral intake of purees over the last couple of weeks. SO challenging. While she still does enjoy tasting food, she isn't really interested in eating more than an ounce at a time and even that she will only eat under ideal circumstances. She gets too distracted by a difference environment, other people around, not being held in the exact ideal position. Basically, if we are not at home, I can't get her to eat much. Not really helping with my 2 month goal of increasing her intake up to 3 oz 3x a day (just over 1/3 of a cup).

Last Thursday Aimee and I met with her preschool teacher and other school therapists and helpers to figure out how class is going to work for Aimee. Her first day is next Thursday and it seems like even the school staff is concerned about how this will work. There is thankfully only 5 kids in her class, but she didn't even make it awake through the meeting of adults in the classroom. They gave me a class supply list and insisted that we bring her with a backpack to class. We went over the classroom routine and activities. I was pretty shocked to learn that they feed the kids pizza for breakfast. Very thankful that Aimee will be on her healthy little diet and won't be touching that! The oddest part of it was that the teacher was excited about the great food the kids get. Hmm. Something is wrong with that picture to me!

Yesterday we met with Neurology to discuss her seizure medications. We have the frequency of her episodes down to about 2 times a week and they are only lasting for 20ish seconds. The Neurologist wanted to increase her medications again to see if we can see further improvement, however, I asked to wait. We are having an overnight sleep study done tonight at Overlake Hospital. If we get any kind of results from this test that have us change sleep habits, I would like to see if this changes the seizure activity before resorting to more medications.

8.28.11

This last Monday, Ed and I took Aimee in for her anticipated swallow study. Ed had to come since it is an x-ray procedure and I wasn't allowed to (and didn't want to) stay in the room for it. They basically just get an x-ray video of her eating and see at what point she fatigues, if she aspirates (breathes in fluid/food) and what consistency is appropriate for her abilities. Aimee did really well in the study! She didn't aspirate at all. It only took her 3-4 swallows to get one bite down (compared to 8ish last time). She did still have food pooling in her throat, but she did well with it and was able to clear it.
After the study was over we met with the feeding therapist to come up with a plan for increasing the amount of food she takes by mouth. Over the next two months our goal is to have her eating puree consistency foods 3x a day up to 3 ounces in a sitting (90 mls or just over 1/3 cup). We are very excited to be able to work towards this goal. It will be a challenge though, a good one, but difficult for sure. At this point, Aimee loves to taste yummy things, but definitely does not associate tasting food with satisfying hunger any more (she has been tube fed for 14 months). We are not sure how far this will go, her main nutrition may be g-tube for a long time yet, or it may always be that way. Either way, I don't care, I get to feed my little girl more bites! Now I just need to expand her palate again beyond yogurt and fruit. :)

8.19.11

Wednesday Aimee and I drove down to Puyallup to meet with the therapists at Good Samaritan Children's Therapy. We were to have elbow braces and hand mits made. They had told me over the phone that since I was coming so far they would be able to schedule all the appointments into the same day. Sadly when we got there, they said that we would have to come back at least one more time. Bummer. They took all her measurements and let me pick out colors, which seemed a little silly to drive 2 1/2 hours for honestly!
The splints and mits are for use during therapy exercises. We have been putting her in a simulated crawl position to build up strength in her shoulders, elbows and wrists. She is getting so big now though that, without some supports or multiple people, there is no way do the exercises. Her hand motion is already restricted from lack of use, so I am hoping that by doing more weight bearing exercises we will be able to keep the motion she has. The other option is putting braces on her hands and arms throughout the day. It's hard to know how much she'll use her hands for moving around... is it worth it to put her through more for motions she may never use?

This morning Aimee and I met with the Pulmonary clinic in Seattle for a sleep consultation. We discussed Aimee's breathing patterns and her sleep habits. They were concerned enough to get us a priority sleep study (or Polysomnography :) fun words). Apparently they are booking out in February right now, but were concerned enough about Aimee to get us a study scheduled for 3 weeks out. Should be interesting to see what comes of it. Since she has such low muscle tone, she is in a high risk category for breathing problems. If she is getting poor sleep quality due to lack of oxygen and if we are able to fix the problem, it could even decrease some of the other issues she is having. As they were explaining to me, if your brain and heart don't get to completely recoup then they wear out faster, which can cause seizures, high blood pressure, poor development, ect.

It's all very interesting!

8.12.11

We had our ultrasound for baby DeVoe on Wednesday evening and Aimee officially announced that she has a baby brother! :)


I've attached a short (5 second) video of him flexing his bicep for the camera, as well as, pictures of his cute little feet and profile. They estimated him to weigh 1 pound 2 ounces with a due date in mid December. He is a very active little guy and we are excited to get to know him more!

8.5.11

Aimee has gotten a few new pieces this last week. Yesterday we picked up her new orthotics. They are pink and called 'bunny' shoes. I find medical equipment more fun in cute colors and with cute names. :) The idea behind these shoe inserts is to help her with practicing standing. She will wear them in the stander itself and when we do therapy exercises. They are supposed to give her more stability and some sensory feedback. The only problem is that they are also meant to go inside of shoes, as the bottom of them is really slick...but they don't fit! I will have to do some shopping for a pair of wide shoes for her.




Monday we were also able to get the final piece designed to go with her wheelchair. (FINALLY!) What a mess getting this little piece! They kept having to give me disclaimers and have me sign paperwork about if our insurance wouldn't cover, ect. Funny thing that by the time we were done getting through all that process we had met our stop loss limit on insurance for Aimee...so insurance will be covering it all anyways. This neck support will be used while she is in the chair so that she sit fully upright and be completely supported when we are giving her visual stimulation and working with certain therapies.

One of the therapist that Aimee has been meeting with through the summer is the Speech Therapist. She encouraged us to use a communication button with Aimee when giving her tastes of food or doing an activity. I recorded the word 'more' on the button so that, once Aimee understands the concept, she can tell us she would like to have or do more of something. We started working with it about a month ago. So far she really likes to hit the button, but I don't think she gets that it means anything.

Yesterday Aimee and I met with the school district again and officially committed to starting school in September (EEK!). We are going to try it out for 3 months and see if she is able to adjust to the environment. The good news is that if it doesn't work at all, they will have the teacher and therapists come to our home, at least for this school year. Nice to know there is a back up plan, since Aimee is a bit unpredictable.

Making a little shirt for Aimee to
announce the gender of her little sibling.
Hopefully it will be completed next Wednesday night! :)