Hello all :)
The trip to Maryland - NIH was a great informational trip. I came
back feeling like the smartest mom on earth!
This is where they are at in the research. They are sure which gene
causes the problem with platlets. They are trying to figure out why
the granueles do what they do to cause them to not work. They also
hope that in the future they will be able to see a possible way of
fixing this problem. It may be simple as a hormone supplement who
knows?!
As for Cody, they have recommend many things for him such as getting
him in to see a cranial face dr., a certain type of braces for his
feet, possible surgery on his sinus (they think his sinuses are
causing many of his nose bleeds), they also suggested that Cody have
a amplified system put into his class room for his hearing problem.
Iam now asking the school to put one in place and fighting for that,
and I work at the same school so my boss is not happy with me at
all! Anyways, we have come home with a long list of things to do.
And we are working on them. Cody was a great up there, he did
fantastic when they drew 7 viles of blood out him every day. He did
great with all the Dr.'s looking at him. The only thing he refused
was the eye Dr.. That is Cody's worst Dr. to see. He cannot stand
having the bright lights in his eyes due to his coloboma.
From my understanding they may ask us back in a year but, possibly
not depends on the research. I waas grateful for the chance to take
Cody and I did come home with a better understanding of why COdy's
platelets do not work. I even have color pic's of his platelets! It
really helps to see them and be able to explain to others why they
do not work as they should!
The folks up at NIH treated us very well and focused on Cody the
whole week we where there!
Laura Wait