update

I started my new medication on 9/8 and I am not sure if it is the meds or coincidence, but I am feeling better than I have in months! I am not short of breath nearly as often as I was before, I require the bi-pap less than before and have more energy. So I am keeping my fingers crossed that it is the medication and not just luck. I have only had some small changes in my fingers, everything else has seemed to stay the same, or as in the case of breathing, has improved!

Baby J got his helmet off on 10/30. He went trick or treating to a few neighbors houses, dressed as a penguin (photos to follow). He was much more interested in the wrappers of the candy than what was inside the wrapper, since he can't eat solid foods.

He is making progress physically and is now sitting up and can now hold his upper body up with his arms, when his knees are on the ground (provided his butt is supported by his legs). So it is like a crawl position but he just can't keep his butt up. :o) The biggest concern right now is his inability to eat solid food. His speech therapist says he has lack of sensory in his cheeks (he doesn't know when there is food in his mouth) so he ends up spitting it out, rather than know when to chew and swallow. So, he is staying on baby food for a while and also has enjoyed people food like yogurt, mashed potatoes, mashed squash and fire roasted hummus! We will be speaking to the pediatrician at his one year check up about whether his diet will need to be altered or supplemented until he can eat.

Bob's parents were just in town for a visit and as always, we loved having them! They went with us for Joshua's first Chuck E Cheese experience. Joshua loved the big TVs screens with kid videos and flashing lights. He threw a fit when we tried to take him away. He also liked riding in the kiddie rides, provided they lit up or had music.

That's all for now . . .