So I'm very behind on my updates for everyone. I guess in a way that's a good thing because not to much has been going on. Her g-tube surgery went very well and it has been great so far. We are able to give her all of her medication right through there so she doesn't have to taste them. We hook her up every night so she can get a continuous feed for 10 hours while she sleeps. I wish this would help her weight out but unfortunately it has not. She cant seem to get over 16lbs and stay there. She has been going up and down between 14-16lbs for months now. We keep increasing the amount of calories in her formula but no luck yet.
We started our 2010 spending the day in children's. She was going through these sleeping spells where she would not wake up sometimes for 16 hours. There was nothing we could do to wake her up either. I described it as her being in a coma. It is very bazaar and the doctors didn't seem to concerned for now. They told us just to let her sleep and to tube feed her if she wont wake up to eat. The spells are decreasing so that's a good sign.
She is still not able to take solid food but I'm hoping when we go to have her tube changed in a few weeks we can schedule another swallow study to see if she can now handle it and not aspirate. All of her therapists a very happy with how she is progressing. She is really starting to look around and focus on objects and people. She can hold onto toys and is starting to reach for things. All in all her seizures have stopped and that is really helping her development so I pray we continue on this road. I promise I will not let MONTHS go by again before the next post : )
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