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!

swallow evaluation

Mahiya when she woke up after her code, was evaluated by speech therapist (ST). At that time she had her jaws tight and did not open much, the ST called it tonic bite, and said this is due to her severe brain damage (which I hated to hear). Then the ST put her finger to see if she had gag reflex. NO.... then an ice chip in her mouth to see if she would swallow. She did swallow but ST said she is very slow to swallow waits until her mouth is full. So we were given a big NO to oral feed. After couple of days I saw her mouth was very dry,so I started giving her water in a syringe and she loved it. Couple of weeks later ST came again and said the same thing again...........we were very upset first and then we understood that aspirating could cause even more set back. So we have been tube feeding (J tube) Mahiya since her code.

After coming home, we have been giving her little taste of food that she loved before her code it seemed like she was liking it. Last week we had another evaluation and the ST gave her half a baby spoon of apple sauce. She opened her mouth and bit on the spoon and won't let go. Again the ST started "she still has the tonic bite". NOT AGAIN!!!. But she let go in few seconds and swallowed the apple sauce. ST looked inside her mouth to make sure there was no residue. There was  no residue and Mahiya took another spoon. Drank water out of a cup. ST was happy with her and said that she does not feel like she is aspirating but still she wanted a swallow study to be done before we feed her orally. Swallow study is done under continuous X-ray. She will be given some liquid to drink mixed with barium (tasteless). This barium can be watched under X-ray to see if she is swallowing without aspirating. But ST is OK with giving her little pureed food until the swallow study. Liquids have higher risk of aspiration.

Mahiya has not had much solids even before her code, so she it is new to her. Hope she starts eating solids and likes it.

Whew...

Mahiya does not like to be laid on the floor. She wants to be held all the time. She was like that even before she coded. She would be crying the whole time during her each diaper change. The scary part is if she gets really upset she will hold her breath and her heart rate drops. Usually her breath holding spell lasts for few seconds and she will start breathing normally. Blowing on her face helps, but after transplant I am scared of doing that, as I don't want to give her my germs. This afternoon, she was in my lap and then I had to go send my older one off to school, so I asked the nurse to watch her and put her down. She immediately got very upset and started crying. She held her breath, I immediately picked her up and was trying to calm her. But she would not calm, she held her breath for so long that I started freaking out. She could not let go. Her face started turning little blue, I thought she was going to pass out. I got so scared that I could not think, then suddenly blowing came to mind. I did not care about germs and blew on her face twice and she immediately stopped crying and took a deep breath. Then she just had her eyes wide open and staring at me without any expression on her face, as if she was in a shock. I got very worried. I wanted to make sure that she was OK. I grabbed my phone and played one of her favorite video and she started smiling.... whew what a relief.....

What matters most?

We had an neurologist appointment. We were really scared before the appt, as we did not want to hear anything negative about Mahiya's neurological state. I don't know if we are cheating ourselves or just don't want to face the truth. But the most important thing is we don't want anything or anyone to do even a slightest damage to our hope. Hope is all left in our life and it is our strength. The appointment went well. The Dr. J was a very nice person. He is one of the best in our area. He spoke for 30 mins and it was very pleasant. He neither gave us false hope or ruin our hopes. He exactly understood how devastated we are and the pain we are in. One of his point made a great impact on me.

He said "I have treated so many neurologically affected kids, kids who will never walk or talk to kids who top their class, but they all are happy. They don't care about their disability. They are happy the way they are. It is like happiness is in a separate gene. Keep them happy. Just enjoy the time with them. It does not mean that you have to forget about their disability, but you have to learn to lower your expectation for your kid. Keeping them HAPPY matters the most."

It was such a great statement. We don't know our destination, but will keep moving with hope and try our best to keep her happy.

When we bring up any issues with Mahiya to the doctors, they say "she is very complex it is not easy to tell anything or pinpoint a reason". We don't know what to do sometimes.Wish there was a specialist who is an expert in all fields. Mahiya's progress has been really slow. Patience is a virtue. Hope our patience will be rewarded.