Tuesday, December 16, 2008

Jailynn appts.


today jailynn had motion lab analysis, i had no idea what that was, but i found out, its a research/treatment study that kennedy krieger is doing with a split plane treadmill, thats were they can set the treadmill to make each foot go a different pace. jason and I didn not know this was an optional appt, we thought we had to do it for pre-op, but when we got there they said it was optional to participate and get this we got $75! and each time she goes back she gets $, plus they dont even charge the insurance or anything! plus this will be helpful for jailynn relearning to walk after surgery and help with her left side weakness! and it benefits others with the research! jailynn was really crabby during it though cause we made her sit in the srtoller a while while i did paperwork and consents.

she calmed down in the waiting area with cartoons and we had to wait like an hour for her next appt, they were suppossed to get us in earlier but i dont know what happened. They second evaluation was neuropsychology and it was like a developmental evaluation. I loved the 2 doctors and jailynn loved them too. she did very well and was cute as a button while we were in there. The doctor was very helpful and explained some of what i can expect when she stays in kennedy krieger inpatient after surgery. she siad it is a team decision with the docs and parnets when she gets there and when she leaves, but she will probably only need 2 weeks there. so 4-12 days at the hospital and 2 weeks in rehab. she gave me her card incase i have any questions or just need to talk, how sweet!

Diana still has not gotten back to me about Jailynn's MRI, so yesterday I went ahead and called the MRI department myself, they called back and told Jason (I wasnt home) that Jailynn does havbe an appt for January 20th, 2009 at 10 am. jason didnt ask if it was under sedation or not though.

Jailynn had her OT evaluation for Pre-op today. I really liked this therapist too. She said when Jailynn is inpatient she will probably be her therapist. Jailynn was very cranky for this appointment. 9 am appts are not very good times for Jailynn.

1 comment:

Anonymous said...

Hello. My son, age ten, was also diagnosed with ACC at 13 months. I did a lot to help him overcome what would have gone on to become a lot of ACC deficits through constant midline enhancment and sensory stimulation. I wish you well with Holly. Have you had her tested for any endocrine issues? My son has congenital adrenal hyperplasia, a rare form of adrenal insufficiency. See my page at omnibuswriting.com, under "Sensory Integration". If you can't find anything, email me. Oh, and please read my article, "Building the Brain through the Senses". good luck.