We have settled into our new home now.
Despite continuous challenges of equipment being shared - Bryce and I have been consulting and meeting with all providers and working very well with his team at Shriners.
Our friends and family are every so supportive - I am finally starting to get some thank you cards out. My mom has been really great at not just playing activities but such a good grandma learning 'grandma roles-tube feeding, supporting positions, leg exercises- Way to Go Grandma!!!"
When I take a step back, its amazing how much I have learned to care for Bryce - using gtube, feeding pump at night, bipap at night and naps, venting to get air out of tummy, positioning, PT, OT, and all the various speech activities including stick out your tongue go back and forth like mommy, say .... and he repeats. The suction machine and cough 2-3 times a day is a normal activity - His diet - that is something still in negotiation - AA diet is really the best for him,lots of carbs, fruits and veggies. I puree avocodos, sweet potatots, makes soups and his favorite of course mac and cheese with chicken pureed. He loves this soup (his new word are hot- he won't eat soup cold) hee hee
|Play date with Emily|
Look at this!! I feel so fortunate and blessed. I taught him "go" and now he realized that if he moves the control fwd , back, rt or lft he will make himself "go"
Shriner's Children's hospital is simply amazing. The whole team up there is just wonderful. We began to have Bryce followed by this team of Neurologists, Dieticians, PT, OT, since October of 2012.
Little mister mister keeps surprising all of us with his new skills and such great attitude - such joy!!