June 5, 2012

Mahiya's mood has been changing quite a bit these days. She has cycles of good and bad days. Any change in one of numerous medicine she take make her crabby. She is super sensitive to these changes, with every change in her meds high tone kicks in. She will have higher tone for even a week. High tone make it very difficult to give her any therapy. She will be pushing her head back as hard as she can that it could stop blood flow in my arms when I am holding her head. High tone kicks in her arms as soon as I touch her arms to do some therapy.

PT at the U of M is going well. She will be upset but still the PT keeps doing and after sometimes she gives up and starts cooperating. She is doing stander these days. It is not easy, she has to be rocked in the stander all for just 10 minutes of standing. 10 minutes in the stander is the best we could get out of her. Hope she improves.

We are looking to switch in-home OT to Gillette OT, because she does not do well at home. Now a days I feel like she is getting stranger anxiety. It is a good thing but still not good for therapy. As soon as she hears a new voice in the house she gets upset. She knows if someone else is holding her other than me, my husband or her nurse.

Mahiya's sleeping pattern is very disturbed. In the day-time she refuses to take a nap even if she is super tired. She will be cranky but will not go to sleep and by the end of the day she will be so exhaust.

This week is Mithilya last week of Kindergarten and it is going to get hectic for me starting next week.

Thanks everyone for your continued support...

Six Months update

Can't believe six months has passed since Mahiya's sudden cardiac arrest. Six months have gone with little improvement. I am not sure if the improvements are good enough for six months or if it is too little. When she woke up after her arrest she was not able to move her body at all. Zero neck control and her eyes would stare away to the ceiling. Now she has some neck control. Follows toys sometimes. Tries to bat at toys, but her arms still won't come to the front, it is usually to her sides. And when she initiates a movement her upper body stiffens out. She has been pushing her head back so hard these days, she was doing that 3 months before but after her baclofen it got better. But recently it is getting worse.

For some reason she does not like to sit leaning against her back, but she like sitting leaning forward. The school has loaned us different therapy chairs but she does not sit on any of those chairs. She spends half an hours a day sitting in a adult rocker leaning backward. She is prop sitting with boppy pillow arround her tummy for 10 mins . Sometimes she can prop sits without the pillow. She was getting in-home PT therapy once a week and she absolutely hated it. She will be crying through out the session and we decided we need to make some changes. So we cancelled in-home therapy and started center based therapy at the UOM. Hope she does better with the change. I am learning lot of new stuff from the new therapist S. I feel like a stupid not to know all the great information for 6 months that S gives me. But I am alteast glad to have made the change.

Last week when giving Mahiya her bath I took her clonidine (for BP) patch off. And I forgot to put a new one on. Her sleep cyclewas totally messed up, but she was very alert. She did not want to sleep she just wanted me to keep her busy. She would be happy with just 3 hours of sleep in the night. And won't even take a nap. Her blood pressure was also fine. But her tone increased significantly and she was arching her back so much. But I could not understand why. Then after 3 days I realized that the patch was not on. But with her BP being in a good range I thought it would be good to keep it off. Then the next day her BP was high and I got scared and put the patch on. It has made her too drowsy. She has been sleepy the whole day. Now I feel like it will be a very good idea to wean her clonidine slowly because it makes her drowsy. I feel like it will help her alertness as well.

After passing swallow study, she is taking some formula orally. She takes 40 to 50 mls in a day. She is still getting most of her feed through J-tube. Hopefully some day we could go with just G-tube for her feeds and meds.

Passed Swallow study!!

Mahiya had a swallow study done yesterday. And she passed it. hurrah!!

I drove Mahiya to the hospital for the test and thought I will try putting her in her stroller. She usually gets mad in the stroller, but yesterday she was happy in the stroller and had a good sitting posture as well. We went to the Radiation center and were waiting for the test. A nice lady from child family came and explained about the test and said she has to sit in a tumble form chair (it is just a chair with good support) during the test. I thought, oh no.... she is gonna get mad and will not cooperate for the test. But she proved me wrong. She was very calm and happy in the chair. She was given a thin barium liqiud in a syringe. It was apple flavoured. To start with, she was very slow to swallow as she has not had anything orally for almost 6 months but once she got a hang of it she did good. We could see the liquid go down as she swallowed in the continuous X-ray video. She did a good job, did not aspirate. Then she was given a semi-solid barium paste. She was confused first when she had it and then she swallowed it. So the speech therapist has given a OK to oral feed her. We are excited but still are worried abut her throwing up and not getting her medicines.

Yesterday I was holding her and was eating a sandwich and she smelled it and she wanted to have it. She was moving her arms attempting to get it and had her mouth wide open...... ha....ha....but she cannot have it....not yet . Then I tried to give her a bottle and she was biting the nipples but did not attempt to suck on it. But she drinks out of a syringe. It is going to be a very slow process...... we will take it slow.... as long as there is some progress.....

Thanks everyone for your continued support!