Roll Call

[Guest guest]

Hello Everyone and Happy New Year to all!! I want to thank everyone for being so

welcoming to me, as I have just recently joined the group. So I am happy to have

this opportunity to tell you a little about me and my beautiful son Jack!!

My name is , I am 33 years old and I am married to and have been

for 3 years. We live in Plainville, Connecticut. I gave birth to my beautiful

little boy, Jack, on March 30, 2007. He is now 9 months old and really doing

great! We had no idea about anything when I was pregnant with Jack and went into

his birth thinking everything was just fine. Almost immediately after he was

born, we were told they heard a murmur and a day later we found out he had

Tetrology of Fallot. Not knowing anything about this, they told us they were

going to do further blood work to make sure there were no " syndromes " attached

to this condition. It is ironic because when they handed Jack to me for the

first time after he was born, I thought for a moment his eyes looked a little

small and like he had ds-but it was so mild and everyone, including my husband,

family and even the doctors, dismissed what I saw and told me I was wrong. So

anyway, when they said they were going to do more

blood work, my fears immediately returned, and the next day we were told he had

" blast " leukemia cells and that he did indeed have ds. In a matter of a week we

were sent to cardiology, hematology, and genetics. It was all so overwhelming at

first. We found out 2 weeks later that he had mds and were told typically it was

supposed to be a more milder form of ds, but that it was not necessarily the

case. At that time and with the sample they took, he had 12% ds cells.

Jack had heart surgery at 3 weeks of age on 4/26/07 because his condition

worsened and they needed to complete the repair as soon as possible. He was such

a trooper and a true miracle and fighter, he made it through his surgery and was

released 7 days later. His " blast " leukemia cells have since gone away (as of

September) and we are hopeful that his blood continues to be ok. We go for more

blood work in February, but the blood tests have gone from weekly to now every

few months. So we have come a long was and continue to remain positive.

It has taken me some time to join a group like this and reach out because I

felt like I needed to do it on my own and in my own way, but I have learned that

the more support I have, the better. My husband and I have also come a long way

in working together as a team and bottom line-we just truly love Jack and he is

the light of our lives!! He is just wonderful- he is sitting up independently

and on his hands rocking back and forth wanting to crawl!! He smiles all the

time and just a true joy. He is so beautiful!! We have PT once a week and OT

once a week and they are both really pleased with his progress.

OK, sorry if I just kept on and on, but that is it I guess in a nutshell.

Thank you again to you all for welcoming me to this group and letting me in on

your lives and what you have learned and continue to learn. I look forward to

getting to know all of you better!!!!

(mom to Jack, 9 months, mds)

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