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

Hi my name is Jacolyn and I have 28 wk BGG triplets born Aug 9, 2005. Grace as PVL and Spastic Quad CP. One of the hardests part right now for me is seeing Grace watch her siblings do things she can and knowing that she wants to. You can see it in her eyes and hear it in her laugh. I don't visit TC much anymore but check out the forum occasionally.

You can check us out at lieck3.blogspot.com

I have been on TC since August 2004, but am new to the Special Needs forum. We recently adopted two little boys from Uzbekistan and Ukraine, both with special needs. Our son Joshua, adopted from Uzbekistan (12 months) was born with sacral agenesis/caudal regression syndrome and phocomelia of the legs (he is missing both femurs, knees, his left tibia and his left fibia is short and malformed). Our son Evan (3.5), adopted from Ukraine, has arthrogryposis which effects all of his joints (fingers, wrists, elbows, knees, shoulders and hips) with the exception of his jaw. He also has clubbed feet.

The boys have not been home for long so we are still in the initial consult phase of their treatment, surgeries and therapies, but they are both doing very well and I am constantly amazed by them.

Valerie
Proud Mommy to:
Evan (7.8.04; adopted from Ukraine 12/07)
Maren, Lukas and Jacob (1.22.05 @ 33.6 weeks)
Joshua (1.8.07; adopted from Uzbekistan 10/07)
http://family.avitria.com