Little Medical Update!

We are still in the process of tapering Charlie Claire's keppra...it has been a month since her last dose decrease and we will be dropping it again tomorrow.  We aren't sure yet what the next dose decrease step is but we have an appointment with Dr. M on the 24th so I am sure we will find out more then.  Speaking of the taper...it seems that each time we taper Charlie Claire off a med her sleep schedule gets messed up.  Thankfully she sleeps through the night (knock on wood!) but she wakes up SUPER early and doesn't nap long which sort of messes up the flow of the rest of the day.  Typically it takes her about 2 weeks to adjust which is when we normally do another taper so it's quite a cycle to get her off of meds.  We are glad to be reducing the number of medications she is on but that doesn't mean we have to like the process of doing so! 

We had a pleasant little visit from Charlie Claire's service coordinator (and Educator!) today! We love Stephanie but unfortunately do not get to see her as much as we see the other ladies who come to the house on a regular basis.  Jason and I are in the process of writing a letter on behalf of C's Early Intervention Program (more on that another day) and Stephanie was dropping off a few things for us.  She brought over all of Charlie Claire's IFSP (Individualized Family Service Plan) papers since December 2011.  Since December Charlie Claire has met 23 GOALS!! It's amazing to look back at what we wrote for her goals in December (ex: get in and out of sitting by herself, open her mouth to allow us to brush her teeth, etc) and the progression of those goals as she has met them.  It is nothing short of amazing to us what this little girl has accomplished in 9 months! 

Monday Charlie Claire has a follow up with the eye dr...we have been diligently patching her (and to be honest she has been doing a great job wearing it) and doing her exercises with her from her OT but her right eye does still drift.  A lot when she is tired. I am pretty sure we will be discussing surgery on Monday.  We are armed with a list of questions for the eye dr since the last thing we want is for C to have another surgery...even if this one is a routine, outpatient procedure.  Ultimately, we do not want this eye drifting to have any negative impact on her vision so we will need to weigh the pros/cons.  I'll update more after the appointment on Monday. 

Hope everyone has a wonderful weekend! You didn't think you were getting out of here without some pictures did you?! :)