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.
