Wednesday, January 27, 2016

Overdue Callie Update

I'm sorry I have completely fallen off the blog wagon.  :(  Eventually I hope to start posting more.  

Callie is 6 years old now and doing very well!  She is in gen ed kindergarten (!) with support and is holding her own.  It is starting to become more challenging for her to keep up as the curriculum picks up during the second half of the year, but she is doing her best.  We are already starting to work on a plan to get her set up with the appropriate supports to make sure she is successful in first grade.  It's challenging because she falls into a crack in the school system...  She is beyond what the special ed classrooms offer, but gen ed is difficult.  

Callie's main challenge continues to be severe Childhood Apraxia of Speech.  She still has very little speech... maybe 30 words/approximations.  She uses expressions, gestures, signs, and her iPad "talker" to help get her point across.  She is a unique case in the fact that she understands absolutely everything, but has such minimal expressive language.  It's amazing she does not have behavioral issues since there is so much trapped inside her pretty little head.  I can only imagine how much she has to say.  :(  Callie continues to go to private speech therapy multiple times per week and we are currently using her sessions to focus on better use of her talker.  We haven't given up on speech, but realize independently initiating use of her talker is critical for school.  

At this point in time, most of her other challenges are either resolved or not causing any issues.  Her seizures have been successfully controlled with Keppra for the last year and a half.  Her EoE seems to have resolved, although we still have to have one final endoscopy to confirm.  She still wears ankle braces, but they have been reduced from AFOs (tall braces up the back of her calf) to SMOs (low braces just to her ankles).  She still has her G-tube, but is successfully eating orally.  Overall she is doing great!

Hope you enjoy these pictures of Callie in the snow.  We just survived the 2016 blizzard (36 inches!).  :)


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