Thursday, February 12, 2009

Eye Appointment for the monkey..and Hope for Hannah project

So for Charli it's been a quiet week really. We had an appointment with the eye dr yesterday. It took FOREVER. He is an odd duck, that's for sure. He said structurally her eyes are fine, they do have some movements that aren't normal (her eyes move out a bit farther than normal) but he said he does not feel she has any vision impairments at this time, and as she gets older she may have one eye see better than the other due to the stroke, so they would do a patch probably to strengthen the weaker eye. He feels the movements she has with her eyes (the deviation from the middle) is due to her stroke and or seizures. He said it could possibly resolve as she gets older, her seizures become under control, and her brain matures. If we choose to go on Vigab (which we probably will) he will monitor her as best he can for visual field issues. He was freaking out initally when we mentioned she might be going on it, but then he said the most important thing is seizure control obviously. And as Jen said, her son was on it for almost 4 years and has no visual issues. (something I need to drill into my husband) Other than that I was playing phone tag with our NYU neuro (who I totally forgot was on vacation this week) so they knocked down her afternoon dose by 25mg to try and combat some of the lethargy and appetite decrease. We will probably be making a switch when I speak with Dr Miles next week when he gets back.

Larry has had several appointments, and is going to get his bloodwork done every 2 days for his coumadin, so that's keeping us busy.

I wanted to take this opportunity to mention a friend of mine (well, two friends) who could use all the support and hands willing to help. Carrie is the super mom to Hannah, who is Charlis birth buddy. Hannah has been diagnosed with Gauchers disease. Right now they are in the process of finding out if it is type 2 or type 3 and Carrie is gearing up for a battle..and she needs recruits. And I wouldn't be a friend if I didn't help support her as she has supported me in my efforts to raise awareness for IS and for pediatric stroke. Carrie has set up a board the Hope for Hannah project..and this board serves as a place for people to give ideas, help with research, awareness, give fundraising ideas etc. If you have the time, please check out her blog and if you have facebook you can join the Hope for Hannah cause (it's on my page as well) Thank you all in advance!

Little Miss Hannah - Our Fight against Gaucher's Disease


Ellen said...

I will go support Hannah, you are a good friend.

Max had some eye problems in his first year, after the stroke at birth. But he is fine now, so hopefully Charli will come along too. He looks so cute in that photo—great eye contact!

Charlis Mom said...

Thank you Ellen!!