Guest guest Posted January 4, 2008 Report Share Posted January 4, 2008 Thank you so much for sharing your story! It sounds like Jack is doing wonderfully with his development! He is right at where he needs to be! I know that those leukemia cells are really scary, especially when they are born with them! But, it sounds like Jack isn't going to have any trouble with it at all. ( Hauschildt dealt with something similar with her Caden when he was born. Perhaps she will speak up here and give you some insite on what they did) I understand trying to do it on your own and doing your own thing. (I did that most of my son's life since there was no support) I think that everyone still does their own thing even though they have our support system. It doesn't mean you are weak or can't do it on your own. It just helps to know that you are not alone in dealing with whatever issues may arise. Welome to our family! Keep telling us all about Jack! He sounds like a wonderful little guy! Kristy ksen wrote: 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) --------------------------------- Never miss a thing. Make Yahoo your homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2008 Report Share Posted January 12, 2008 LOL ....rub it in! Everyone is going to be so excited when they see all that you have done on our site! Everyone: I told that I was going to make Australia my " winter home " that way, I never have to be cold and experience winter at all! Of course...my husband would have to get a much better job I suppose before I could actually afford that...but it is great to think about! LOL Please keep up the Roll Call! We have HUNDREDS more that have not responded! We want to know about you and who you are!!!!!!! Kristy Twomey wrote: Hi Everyone, Been about time i said hi to all the new members and reintroduced myself. Kristy has been keeping me busy on the website, so I'll blame her.....hehehe My name is Twomey, I'm 36 and I am married to for 14 years, and have two children, who is 10 with mds and who is 8. We live in Narellan, Sydney, Australia. was diagnosed just after he was born. He attends the local public school along with is sister, and is in a mainstream class. He had some aide when he started, but no longer receives individual funding, so he gets whatever the school can provide when they get it, like some reading time etc. He loves school, and is generally a happy kid, oh yeh, and by the end of the year last year, he knew all his times tables to 12 in any order!!!!!. Hi sister is not impressed becasue she doesn't!!! He loves that. Socially the kids love to say hi and do the hi5's after school saying goodbye, but he still doesnt have that friend circle yet. Now that his speech and conversation skills are sorta improving, i hope that it will help this year going into Yr5. We are on christmas holidays at the moment, and go back to school at the end of January, so we are all enjoying the summer heat and swimming in the pool and all the summer fun stuff...(It is good isn't it Fiona!!! LOL) I just wish I didn't have to work as well!!! Anyway, Thats us. Oh and if I can help out any families that are in Australia, (Welcome Narelle) I am more than willing to find anything out you need, as I am the Australian Family Connect Rep. Also, if anyone would like to add any photos to the kids photo page on the IMDSA web site, please feel free to email me with a jpg and i will add it. Send them to mosaicdownsyndrome@... If you would like to see the photos that are already there, go to http://www.imdsa.com/photos.htm and use the log in - username - vktphipps password - mds Cheers to all IMDSA Secretary & Website & Australian FC Rep Twomey IMDSA Secretary & Website Admin Mum to 10mds and 7 http://www.imdsa.com http://www.twomeycontracting.com/reunion.htm http://www.costumes4hire.com http://barbaraeastondance.costumes4hire.com Quote Link to comment Share on other sites More sharing options...
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