Day 1 of therapy Assessment day: Our occupational therapist working with Audrey is amazing! Kind, patient and so good with her! Today was a 3 hour assessment. Audrey did really well. Fussy at times but powered through! We discussed concerns and goals at the end. Can’t wait for tomorrow!
Day 2: lots of working! sensory beads and bean bucket she loved. They used a small step stool for tons of activities including her getting herself dressed which was amazing to see some independence. I learned so much today! We need to Isolate Audrey’s muscle that we want her to use because what’s happening is her whole body “fires” (this means she extends her muscles) and its too much for her, causing them not to work properly. With CASK diagnosis, we know that motor planning is very delayed and therefore we have to break down each and every step of a skill. We don’t go from crawling to walking with our kiddos! I have to train the way I think as a parent as well . Im learning so much from the wonderful therapists and they even said it’s okay to be just “mom.” This is something I struggle with on the daily so to hear it from them was huge!
Day 3: SO much progress is happening! Today Audrey dropped the ball in a toy 3 times, reached and planted her hands then pushed up to stand with little support and has even started to sign “more” when prompted! Makes me want to never leave!
We were taken to their research facility today to do some imaging and met the main researcher. Such an amazing experience
Due to lack of federal funding, Audrey is only the 3rd CASK child to receive this treatment so far… it’s ground breaking research and we are so fortunate to have this opportunity. Being here gives me so much hope for Audrey’s future but is also so mind boggling to know that no one else is studying this rare disorder. Dr. Konark is very passionate about the work he does and says spreading the word is the best thing we can do.
Please go to http://www.caskmutation.org for more information on the research that is being done and if you are able, please donate!
Kicking CASK 
Our little Angel is just thriving!! It is amazing to see the process and progress that Audrey has achieved in just 3 days! It was so exciting to visit the research clinic and meet the only doctor in the world that is researching this rare disorder. His passion is apparent. I am beyond excited to see what unfolds for Audrey in the days to come!
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