Monday found us in GI. It was a great visit! We asked for, and the doctor approved, the removal of her GJ button to just use a G button! A huge, enormous, gigantic, thrilling step!! For the past three months, we have only used her G – and we have had no issues. I am thrilled! The moment we got home, I deflated that balloon, and got that GJ out and replaced it with this tiny little g button. So exciting! Huge step, baby girl!
Music Therapy
Look! Look who is playing with dolls. Not before Alex. No way. Not happening. She hated dolls. Now she knows what they are for. My concrete girl – give me concrete examples to teach me! Love this! She so loves her brother!
The sad news for the week – first tempered with good. We have really been pushing the time off the vent and she is rising to the occasion beautifully! Like 6 hours or more a day. So exciting! BUT…it is having it’s toll. Oxygen needs are up. While sleeping, she is riding the vent. Secretions are crazy and she is so very dry. AND….she has regressed so much in PT. She was walking with the gait trainer. Now she is refusing and has reverted to her crazy, compensatory crawling patterns. It’s all about lung capacity. She can only do so much. So we are kinda waiting to see if she will adapt to this new workload and be able to bump up her efforts in PT or not. We’ll just have to see. Give and take. (in the picture she is being fitted for new AFOs and knee braces. You would think we were killing her! She is a strong girl!)
Easter morning. And yes, we did take her to church!
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