Made of Gray

Cerebral Palsy Diagnosis

201 Days in the NICUHolly D Gray6 Comments

So yesterday Eric and I roomed in all day with Caleigh again. It was really nice and much needed. Caleigh has been so fussy the past couple of days. We can tell her belly hurts. All she wants is to be held but at times that doesn't seem to be enough either. Caleigh slept all day while we were rooming in and as soon as we took her back to 'her' room she started fussing. I've been calling to check on her all night tonight (it's 4am) and she hasn't slept a wink and has cried most of the night. We have asked them to stop her feeds so that she might feel better before she goes to surgery. She feels so much better when she's not eating and the new tube to try to help with spitting up doesn't seem to be working either. So hopefully we can get her feeling slightly better before the surgery. We still don't have a surgery date & time yet but I'm thinking it will be later this week.

We finally got to meet with Caleigh's neurologist, Dr. Kelfer, while we were rooming in. He has come highly recommended from so many people and we have heard nothing but good things about him. He started off by saying "neurologists aren't optimistic people" and I said "well good thing we are!" Caleigh's MRI shows a lot of 'bad' damage to the back side of her brain. This is the part that controls the gross motor skills (i.e. walking, crawling, sitting up.) He said that most likely Caleigh will have some form of Cerebral Palsy but to what extent he isn't sure. Dr. Kelfer did say that babies with mild brain scans can have terrible outcomes while those with severe scans like Caleigh's can have little to no problems. He was quite pleased to hear that she can hold her head up strong, track and look us in the eye and he said that all of those are good signs. He did ask me all about my pregnancy, delivery and how long Caleigh was on the ventilator and pretty much came to the conclusion that it is impossible to know when the lack of oxygen & blood flow to the brain happened. So what to do...... keep doing what we are doing ..... Stimulate her everyday, get OT & PT and his great advice "don't replace yourself with Baby Einstein videos!" We really didn't learn anything new and time will tell what our challenges, if any, will be. It was great to get to talk to Dr. Kelfer and he said that he would be by to check on Caleigh often and then we would start office visits when Caleigh gets home.

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