I have been reading all the recent posts and decided to post and
Rachel and Moz- I am so glad that Marconi is back home and seems to
be doing well. I agree with what others said, these boys have a
tendency to be very thin...especially when very young. Javad was
only 24 pounds at 3 years old. Now at 4 he is 35 pounds and we
consider him to be a chubby boy! They also seem to be taller than
the norm, which makes them appear even thinner. Whenever Javad is
sick, he loses weight and we always have a difficult time getting it
back on him. It will happen, just be patient!
Kim- Javad used to sweat a lot when he was younger. As he has gotten
older, it seems to have decreased some, but he is still sweatier
than the average boy. Also...remember that the doctors often have
outdated information. They are all different. I agree that you
should get Sam moving right away, get him involved in therapy
programs, water therapy is great! Javad can sit (when put in the
sitting position) for quite awhile! He can drive his chair like a
maniac (when he wants to), but cannot walk, crawl, or talk. He just
got a trach this past summer, so he is still working that out. Our
pulmonologist is very hopeful that he will talk, but it will take
time. Its just like everything...the later you learn to do
something, the more challenging it is!
To everyone else, hello! I am glad that Jacob, Sebi, and Kyle are
doing ok (Zak too!)
Talk to you all soon!
PS I don't know if I mentioned that Javad had pneumonia over the
holidays, but we were able to keep him home and he is doing much
better! We are almost on the right path!