For those of you who don't know me - probably most of you don't know me- i am an old timer and and haven't been around lately- too much going on and too stressed I am the one who requested that the special needs forum be started here at TC.
I am curious what special needs your kids have ?

All three of my kids have had medical problems and many many years of OT and PT but one son- Braden has had very severe problems. He is doing well considering the severity of his problems (was given pretty much no hope of survivng..)
He has short bowel syndrome (3/4 + of his small bowel removed) and no ileocecal valve- the result of NEC
he has liver disease (PSC) as a consequence of ongoing bacterial overgrowth problems
he also has an immune deficiency that requires him to get monthly immunoglobulin infusions
he has the FAP (familial polyposis) gene that guarantees colon cancer at some point and puts him at high risk for other GI cancers
he has pancreatic insufficiency
osteopenia
he is gtube dependant for his nutrition (he does eat during the day but doesn't seem to absorb the food at all)
doctors are disagreeing about the timing of the need for intestinal/liver transplants.....
the list goes on and there is constant balancing act

oh and my kids are 11 years old and I am smack dab in the middle of tweendom....much more challenging than I had imagined !!!

Lorraine

Reach for the heart of God and not just His hands.
Organ donation saves lives!
Life happens when love is given.


http://www.caringbridge.org/visit/bradenwild

I am constantly on this board. I do not post often, but find great comfort and support in the members. My trio will be three in December. Two of them have a PDD diagnosis. My daughter has no speech at this point and is quite delayed. She has also been diagnosed with neurofibromatosis, which at this point is not causing any problems for her. My son has limited speech and communication and is quite challenging at times. They are all invovled in early intervention, ABA therapy etc... well, to sum it up, that is what brings us to this board. Thank you all.

Laura
BGB
12/3/04
32w2d