Re: Kaydo - New to all this

[Guest guest]

Please do not be sad...I know it is very difficult to accept...but our

children have the ability to progress much better than a child who is

diagnosed as full Downs Syndrome.

I have dealt with this since the day that Jody was born 8 weeks premature.

He is almost 6 years old now. We enrolled in early intervention programs

starting at 3 months of age. We did physical therapy, speech therapy,

occupational therapy, massage therapy, any kind of therapy we could get our

hands on. I enrolled him in 3 & 4 year old half-day programs through our

public school system for physically and/or mentally challenged children.

The only physical characteristics that Jody has are the simian creases in his

hands, extra wide space between his big toe and second toe, widened space

between his eyes, and a tongue control problem.

His main problems are medical and learning disabilities.

Jody has had more ear infections and upper respiratory infections than I can

shake a stick at. He has allergies galore. He had reflux until he was about

3 1/2. He had infantile seizures for about 6 months...they stopped as

quickly as they started. He has a heart murmur.

He still has low muscle tone in his lower body. He trips and falls a lot,

cannot maneuver stairs too well without a handrail, has difficulty running

(very gaited), and still has not mastered riding his tricycle. He was just

starting to get the hang of it when we were given the diagnosis of Acute

Myelogenous Leukemia, so that has obviously been put on hold for a while.

He had just started kindergarten with an IEP when his diagnosis of AML was

given. He has a wonderful school that sends a teacher to the hospital and/or

our home 3 days a week for several hours. He has not yet mastered the

alphabet...he can count to 8 so far, he can't write his name, but he is

working on it, recognizes his name when written sometimes, if we spell his

name, he says " Jody. "

He has a pretty wonderful vocabulary. Some words and phrases are very

difficult for him but he continues to try to improve those that are hard for

him. We constantly sound out those words that are too difficult to master.

Everyday is a challenge with Jody...we strive to help him be the best that he

can be. I believe that the sky is the limit with him...we know that there

will be limitations...but only to the extent that JODY sets them.

If you want to ask questions, please feel free to email at the address below!

<A HREF= " http://www.pilink.com/az/jodypody/ " >CaringBridge - jodypody</A>

<A HREF= " http://www.makeachildsmile.org/ " >Make A Child Smile</A> Jody is an

April Featured Child

Vicky [TaffyLady@...]

Mom to Jody, age 5 3/4

dx Congenital Leukemia and then re-diagnosed Transient Myeloproliferative

Disease and Mosaic Downs Syndrome @ birth

(dx 10/4/99 AML subtype M7 - Acute Megakaryocytic Leukemia,

BMT date is April 24, 2000)

my DH is Bill