Salem, Missouri
Hello my name is Lisa. I also have a daughter who as MDS. She just turned 2yrs. I was 16yrs old when I gave birth to my daughter (Rebecca). When I was pregnant the doctors told me that it was possible for Rebecca to have Downs. But I refused the tests offered to me b/c of the risk for a miscarriage and it didn't matter if my child had it or not I would still love her.
The first year went by fast we still didn't know she had MDS. So when we took her to her 12month well-baby checkup I told the doctors I was worried that Rebecca wasn't very active. She could not crawl or walk. So the doctor considered testing her for down syndrome. It took about 3wks for the results to come in. When the results did come in they said she had MDS. I thought what is mosaic??
The doctor told me that in some cases with DS there could be a defect to her heart so we went and had an echo of her heart done. They found a hole in her heart. We went to a pediatric cardiologist who said Rebecca would have to have surgery to repair the hole by the age 5yrs. But that was 6 months ago.
Rebecca is a happy and healthy 2yr old. And just the other day the cardiologist said that the hole was gone and she wouldn't have to have surgery. Rebecca still isn't walking or crawling she gets around by scooting on her butt. She is in Speech, Physical, Occupation, and Developmental therapy. She is doing very well and the doctors say she is right on schedule for having MDS.
Thanks for taking time to read my story.
UPDATE submitted January 11, 2010: This is an update on my daughter Rebecca. She is doing great. She is ten years old now and has a younger sister Kassandra who is 3. Rebecca is starting to read and is actually having spelling tests which is exciting. She is so happy to bring home a new word she learned and have me quiz her on it. I hope she continues to do well in everything she tries.
Rebecca also did special olympics this past fall where they have a bowling team and she loves it.
She just recently went to the doctor and had a check up and blood test ran and her thyroid is elevated (which means its low, the thyroid results read backwards.) she had to be put on medication once a day and has to have it rechecked every couple of months. Other than that she is a happy health active 10 year old.
She is truly a blessing in my life. when ever mommy gets home from work she is always the first one to give me a hug and ask what's for dinner. you gotta love her.
The doctor told me that in some cases with DS there could be a defect to her heart so we went and had an echo of her heart done. They found a hole in her heart. We went to a pediatric cardiologist who said Rebecca would have to have surgery to repair the hole by the age 5yrs. But that was 6 months ago.
Rebecca is a happy and healthy 2yr old. And just the other day the cardiologist said that the hole was gone and she wouldn't have to have surgery. Rebecca still isn't walking or crawling she gets around by scooting on her butt. She is in Speech, Physical, Occupation, and Developmental therapy. She is doing very well and the doctors say she is right on schedule for having MDS.
Thanks for taking time to read my story.
UPDATE submitted January 11, 2010: This is an update on my daughter Rebecca. She is doing great. She is ten years old now and has a younger sister Kassandra who is 3. Rebecca is starting to read and is actually having spelling tests which is exciting. She is so happy to bring home a new word she learned and have me quiz her on it. I hope she continues to do well in everything she tries.
Rebecca also did special olympics this past fall where they have a bowling team and she loves it.
She just recently went to the doctor and had a check up and blood test ran and her thyroid is elevated (which means its low, the thyroid results read backwards.) she had to be put on medication once a day and has to have it rechecked every couple of months. Other than that she is a happy health active 10 year old.
She is truly a blessing in my life. when ever mommy gets home from work she is always the first one to give me a hug and ask what's for dinner. you gotta love her.
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