Adalina's Story part 3 - the good news

3/4/2010 See how skinny the poor baby was?! And this was after she gained some weight!

So... After finding out Adi's diagnosis J and I were in a bit of a funk with the new information. Of course, me being the medically minded "Let's get something fixed" kind of person I am I went on the internet and searched for anything and everything I could find related to brain damage, brain damage that can occur from birth, and anything having to do with the physical aspects she was displaying (the torticollis, right sided facial weakness, and right sided general weakness). I also emailed two friends that are involved in physical therapies for children asking them for advice since the nurse practitioner told us we would likely not be able to get her in for physical therapy until she was at least 4 months old - the waiting period/lists are that long.
The nurse practitioner guided us to a physical therapy center that she thought would be able to get us in the quickest, and that she thought also would be right for Adi to go to. At the same time a friend guided us towards a government program that helps with these things. Turned out that the government program is run out of the physical therapy center that the nurse practitioner wanted us to call. A few days of phone tag later and we had an appointment. A couple weeks later and the appointment came around. But the appointment was only for an initial screening evaluation to find out if we/she would qualify for this program. Turns out we/she does qualify. But that was just an initial screening. We had to wait until she was 4 months old (to the day or after) before she could get a full physical evaluation. So J and I started being proactive in our approach to caring for her. We didn't do anything drastic, since we aren't professionals and don't want to end  up doing something that could hurt her development. But we did do things like "force" (with much gentle pressure) her right hand open and put a toy that's small enough for her fingers to wrap around into her hand. She was only grabbing with her left hand so we knew we needed to work with her on her right hand. I also started gently massaging her tight neck muscles at night while she's relaxed - not every night, but now and then. I would especially do it when her neck muscles would seem to bunch up at the base of her skull. I can't imagine this felt good. Probably quite the opposite!

4/4/2010 Sleeping on daddy's chest/stomach and finally has some baby fat!

Well, fast forward to her actual physical evaluation that was done a few days after she turned 4 months old - they determined she needs physical therapy. Mostly because of the torticollis even though it's considered "mild." The good news: she scored at/above age level on all of her communication skills. One of the things I'm really worried about is how well she will/won't communicate because the brain damage is left sided, and the left side is where the vast majority of people develop these skills.

6/12/2010 Happy baby!!

 Fast forward again to this past Friday (7/30/2010) and we've come to the day of her first physical therapy session. This session came after about three weeks of waiting for a phone call saying we were approved for physical therapy and that they had found a physical therapist, plus another week and a half of bouncing back and forth playing phone tag with the physical therapist. After the physical therapist evaluates her, she states that yes, Adi does have torticollis, and she's a little tight in her right arm movement/range of motion.But she also says that from Adalina's file that she expected her to be much worse. That while she does have these slight problems, they are hardly noticeable at all! Such a relief to hear! Adalina isn't completely out of the woods for possible developmental problems, but she is definitely much better off than she could be! Not only that, but she seems to be getting better just from the few things we have done so far. Hopefully with the help of the physical therapist these few slight problems will be gone in no time.

7/21/2010 Enjoying playing in her bed.