Morning Update

Leah did well overnight. She was up two times but that's pretty normal for her (unfortunately for us...), and she went back to sleep easily both times. This morning her right eye is swollen shut, but since it's dark outside it didn't seem to bother her yet. She is having an issue with that big bandage today, and keeps pulling on it so it's slowly moving forward. I am going to have to find a way to pull it back this morning to keep it from covering her eyes, though I'm nervous to do so since I don't know exactly where the incision is and I want to make sure I'm not pulling on it, or that I'm exposing a part of it when I adjust the bandage. The bow on top seems to be especially enticing to her so it's possible that I may just take that off (though it's pretty cute...) and see if she will leave the rest of it alone.

Yesterday before we left the hospital and as we were waiting for our discharge papers, I called a few places to look into cranial orthotics, or a positioning helmet. Dr. Taylor says that while her forehead looks fine, she still has "bossing" on the left side, which means that part of her head sticks out further than the right. She also has plagiocephaly in the back of her head, and while part of that is from the fused suture, part of it may also be from the distractor, which prevented her from turning her head and caused her to lay with the back of her head flat against her crib. He said it's very mild, while the bossing on her forehead is moderate, so he wrote us a prescription for a helmet. They do helmeting therapy at CHOP, but the therapy requires visits every 2-3 weeks for adjustments. So, he suggested we find a place closer to home to have this done so we don't have to drive to Philadelphia all the time. He said that helmet therapy wasn't terribly technical and that he thought she would have excellent results no matter where we went, and that orthotics companies are very common (his actual words were, "There's one on every corner in Philly.") He's kind of right, because I saw at least two different Hanger offices as we drove out of town. Of course, that proves not to be the case in our area, so after some web searching and some assistance from the Blue Cross people, I found one place in Syracuse that has a cranial orthotics tech who works only with kids. I called, and we made an appointment for the end of February. That will give Leah's incision a chance to heal before her first helmet fitting.

We will learn more about the helmet therapy when we see the folks at the Hanger place, but Dr. Taylor said that she will probably be in the helmet for about three months. He also said they will insist she wears the helmet for 23 hours a day (taking it off only for baths and if she is going to eat especially messy foods, which is pretty much any food for Leah...) but that he thinks that is less important so we should use our judgement on that. I know that most kids get used to the helmets quickly, but that sometimes they have issues with helmets when it's very hot outside. Fortunately we won't have that problem in Upstate New York in the spring! We are sure that she will have no problems with the helmet once she gets used to it, and compared to the surgeries she has just endured, a helmet will be no problem. Plus, it's not a terrible thing for a baby learning to walk to have a hard-shell helmet on her head at all times!

Here's a picture of what a cranial helmet looks like. John is hoping we can get a plain one so he can decorate it to look like a hockey helmet!