A new pediatrician saw Madison today, and something he said tickled me: "You know more about her diagnosis than I do, and I'm the doctor!"
I couldn't help but smile at that. I think it's because it's really nice for a doctor to acknowledge that you may know more about your child and their specific needs then they do sometimes.
There has been several new happenings with Miss Maddy. First we'll start with her CT scan results. It turns out she has an enlarged vestibular aqueduct in her right ear (the ear with hearing loss) and the other ear is perfectly fine. Basically we need to make sure she doesn't get big blows to the head from things like contact sports, no riding on an unpressurized airplane (like we would anyway!), no deep sea diving, etc. because then she could lose hearing in her right ear completely. It can mean a progressive hearing loss as well, but the doctor is pretty confident that won't be the case for her. Overall, I was content with the results. I'm thankful we have an answer to the hearing loss and won't have to do further testing (other than routinely monitoring her hearing, of course).
We were told by her pediatrician that she wanted to start testing for growth hormone deficiency as well as thyroid problems. We took her the next day for the blood work, and we had the results within 24 hours. As odd as it sounds, she has a HIGHER than normal amount of growth hormone and no problems with her thyroid. Make sense? Not really. Not to me at least. She hasn't grown in length in 3 months. Our next step is to up her calorie intake and monitor her growth in a months time. If she hasn't grown after that, she may be getting a G-tube. I'm new to the concept of G-tubes, so I'd be lying if I said I wasn't nervous. All in all, I just want my petite girl to grow. I'll do what it takes.
Last but certainly not least, we had a scare the other night. Madison was on the floor playing yesterday when I walked over to pick her up. Her eyes were involuntarily moving from side to side at a fast pace. I knew she couldn't control them and it scared the living crap out of me. I automatically assumed it was a seizure. That may seem silly, but truth is I've never seen one in person and really had no idea what to look for. All I knew was it could sometimes affect the eyes. She wasn't limp or shaking and she was responsive, but once again I didn't really know to look for that. We took her to the doctor, and he feels like it is nystagmus (involuntary movement of the eyes) which is pretty common with 18q-. We'll be going to a neurologist on May 5th anyway to rule out seizures, and we go to an opthamologist on May 6th.
That's pretty much it! We finally got her physical therapy scheduled, and she has her first appointment on the 26th of this month. Yay!
I keep updating these post with no pictures! That'll be next! :)
