Wednesday, May 14, 2008

No more Follow-Up

Another whirlwind day where nothing got accomplished at home and Elizabeth spent her day being dragged from one appointment to another. Her first appointment was to review her AFO's as we are still concerned with her Rt. knee hyper-extending and the Orthopedic surgeon wants to her try a newer splint. I discussed this with the Orthotist and his student and they agreed to try a new splint. As they have not done this before it will be a trial and it will be free of charge for us (her splints run $2800). They will use it as a case study if it works which is fine by us.
Our last appointment was the Growth and Development Clinic and as she is 3 it was our last follow-up. They completed the Bayley's scale on her and she did very well, I was so proud to see her answering the questions and following directions. She scored quite well with her only major deficits in gross motor. We met with the Dr. who also specializes in CP and I had lots of questions for him. He said that yes Elizabeth's does have Ataxia (the first time a Dr. admits it) and that it probably has nothing to do with her prematurity as it is quite rare to have Ataxia. He questioned that it may be a genetic condition but cannot speculate until an MRI is done (we are still waiting it has been 10mths now, arghh). We hope this is not the case as we really want another baby and Elizabeth deserves to have a sibling as well. He did mention he also sees it in her hands as well as her arms and hands do shake/tremor and this is something we have noticed lately as well. He was very pleased with her cognition and language but was concerned with her articulation and questioned why we are not using hearing aids. It is so hard to figure out is her articulation related to Ataxia, poor oral motor tone and hearing loss, she is monitored closely so it is not a big concern for us.
Her last preemie stats are wt. 26lb and height 82.8cm.
Elizabeth was so good only a couple hairy moments from being cooped up too long. She also had a poop on the potty today, we are so proud.
Overall a good day; free splints, a diagnosis and a poop on the potty. A day at the park would have been preferred but we will take what we got today.

1 comment:

Kathryn said...

Wow - she is doing really well (even with the Ataxia). It's amazing how much kids can do despite challenges that look really difficult from the outside! And Yay for poops on pottys! We are just starting that whole process now, and I am more than a bit intimidated.

It's frustrating that you are having to fight so hard just to get your MRI results. Sheesh! What's up with that? Have a diagnosis too will help you get more services for her.

You are such a great mom!