The daily update-
Today we had our regular visit with our developmental doctor. This is always a hard visit, but I have to say that she is wonderful at putting the whole picture together and she really cares about Molly. These visits always last about two hour and are very detail oriented. What we know is that Molly seems to be stuck at the developmental level of a 6 wk old. She has now officially diagnosed her as having CP and many of the issues that go with that. Molly is very high tone and we are hoping that they will do botox on hips to help those muscles relax. They are very concerned that her hips are not developing as they should and if we don’t address that soon, she will have to have surgery. The next issue that they are concerned about is her growth. She has now dropped off the growth chart for her weight and almost for her height. There are two things that are going on with her growth – one is that she may not be making growth hormone and two is that she is just burning so many calories (due to the high tone) that she can’t gain. We will now go for a feeding evaluation and swallow study. We have to make sure that she is swallowing liquids well enough to supplement her with a high calorie formula (she is currently a breast baby and really does not like the bottle). We are going to wait one more month before going for an endocrine evaluation. Her head is also no growing, which may mean her brain is not growing – we have an MRI in February to look at this. Our last major concern is related to Molly having seizures. We will see the neurologist in the morning. We will have more answers then.
These past few months have been the hardest of our lives, but it has taught me I can handle anything with God’s help. It has also taught me that there is still so much to be thankful for. I love my family so much and I am glad for each day with them. I am also so thankful for all of our wonderful friends and the support they give us.