5.27.11

-Aimee is having an Open House!
We'd love to have you join us to
celebrate her wheels!-

Monday morning Aimee and I were able to have a follow up appointment with the wheelchair company and received all but one of the missing pieces. The adjustments with these additional parts have made the chair fit her better. It's nice to see her sitting up so tall and straight. The only thing we are waiting for at this point is a neck piece, which will hopefully come directly to us in the next few weeks.

Monday afternoon we met with Orthopedics and Orthotics departments for a club foot treatment follow up. The doctor is very pleased with the look of her feet and ankles, which is good because we have been so faithful with using the bar every night. Not always the full 12 hours that they have asked for though. She also got a new pair of shoes from Orthotics while we were there.

Wednesday Aimee did really well in her Occupational Therapy appointment. She works so hard with the abilities that she has been given. It is amazing to see, but REALLY testing my patience. She does learn new things, but it takes a very, very, very, very long time of repetitive action. I know that I should be happy that she is making progress, but when it takes a year of work to see slight improvement...it's really discouraging.

Yesterday we met with the Audiology department to get new hearing aid molds made. It takes 2-3 weeks to get them back and the molds she has are already starting to fall out of her ears. Hoping that we will be able to get the hot pink ones again. They looked so cute on her.

Aimee has been on the seizure medications for 4 weeks now. We are still increasing the main medication every 2 weeks, but she hasn't had any major reactions to date. It does seem to be affecting her digestion some, however, the main difference I've noticed is that she has dramatic mood swings. Although, it is hard to know if this is due to the medication or if it is just those cysts in her ovaries acting up again. We'll be meeting with Neurology to discuss how the medications are working at the end of June and to review the results of the brain MRI that she is having that morning.

I contacted Neurodevelopmental last week, because I had been reading through old clinic notes and saw that there was one syndrome in particular that they decided not to do further testing for because Aimee wasn't (or we thought she wasn't) having seizures. I was able to speak with the nurse on Tuesday and we discussed having the test done. It is an expensive Chromosomal sequencing test that takes about 2 months to get results on. Aimee has all of the symptoms of the syndrome (and more), however, her case appears to be much more severe. We have decided to hold off on this testing for a couple of weeks until we meet with the Genetic Neurologist hoping that this doctor will have more insight. When I read about all these difference disorders, it really seems like Aimee either has multiple syndromes or has a very unique situation. So many symptoms to match.