This blog is dedicated to differently-abled children, particularly those diagnosed with a radial ray defect, hematological issues, Failure to Thrive, developmental delays, microcephaly, cerebellar dysgenesis or cerebral palsy.

Friday, December 19, 2008


Emma saw her neurologist and gastroenterologist this week. Dr. Collins, the gastro doctor had Emma's genetic test results back: yes, she DOES have one of the celiac genes! Emma has the one that I don't have; I have HLA DQ8 and Emma has HLA DQ2. Which means she didn't get it from me! Nevertheless, this means that she does have some chance to develop celiac disease, if she doesn't have it already. So I definitely WILL put her on the gluten free diet with me in the near future. Also, Dr. Collins wrote a prescription for Emma to start taking Previcid, which is what her cousin Carly takes for GERD. Carly has celiac disease; she was diagnosed via biopsy.

The neurologist, Dr. Imbus, didn't have a lot to tell us. I asked for a copy of Emma's chart, so that we could send Regional Center the records showing Dr. Imbus has entered a diagnosis of 343.9, Infantile Cerebral Palsy, non-specific. We hope that this will enable Emma to continue as a Regional Center client after she reaches the age of 3.

Also, Emma was FINALLY seen by the OT and PT people at the Claremont Medical Therapy Unit. They evaluated her and I really liked both of them. The PT person is Julie and the OT is Irene. Emma did very well; I was amazed at one point when Julie got Emma to stand for several seconds leaning against a little bench. Then she put Emma in a small Rifton walker and let her go. She got her to walk forward and backwards.

Emma was being a bit shy, as she always is around strangers. She wouldn't talk at all to either of them. Irene tried to get Emma to throw balls and other things and that wasn't working so well.

Of course, the instant Julie took Emma out of the walker, Emma forgot all about being shy and announced, "I want to go in the walker!". She absolutely adored that Rifton walker! Julie says that they may be able to loan it to us temporarily, but they will try to help her get one of her own. Emma's current walker at home is just a standard walker for babies, and it is too short for her now.

I'm SO glad that they agree that mobility is important for Emma; that's what she craves right now! Julie and Irene also asked what we thought about a wheelchair for Emma, but I said that a standard manual chair wouldn't work because her hands and arms are too weak to move one. We may have to have a wheelchair for her at some point, but both therapists said, "This girl is going to walk!" while they were observing her in the walker.

It's really exciting when a professional says something encouraging like that! Her doctors never make those kinds of predictions. Maybe they think it's unprofessional? Or they are afraid to say something like that in case it doesn't happen.

I think Emma will walk...when she's ready to.

1 comment:

holly said...


I am an idiot, and I forgot how to get to this blog. I am trying to get caught up. Way to go, Emma!!!!!!!!!!!!!