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.