Ellenburg Center, New York
Hello, I am a mother of two very beautiful daughters: one is six, and the other is 15 mos. old. My youngest was diagnosed with MDS shortly after she was born. There was so much going on at the time that I really didn't have time to digest all that the Genetic Counselor was telling me, because Brooke, my daughter was born with heart disorders, and was scheduled for surgery as soon as she was big enough to undergo it.
My little girl had (5) five holes in her tiny little heart that she had to have repaired, so that was my least concern to know exactly what MDS was! At 2 mos. of age, Brooke had taken a turn for the worse, and had to have the surgery, even though she was so little. It was one of the worst times I think that my family will ever go through! She made it through the surgery just fine, and hasn't had any more problems with her heart since. I do thank God everyday for that! Brooke has had other problems though, like very poor muscle tone in her upper body that she needs therapy for. Her speech is delayed, in which she has a speech therapist for. She also has had problems with weight gain. I know that usually in children with down syndrome, it is usually the total opposite, and they have trouble with being over-weight, but not in her case! Since she has been born, I have fought with her weight. She has a home health nurse that comes into my home twice a week to weigh her, and most of the time we are counting ounces! When Brooke gets sick (which she has a lot of upper respiratory infections, URI's), she loses weight, not a lot, but 3 or 4 ounces. And that to us is a major set back! So I am wondering if anyone out there has the same situation?
Brooke has also had to have an NG tube down her nose since she had open heart surgery to try and get the extra calories into her for the weight gain. We just got the tube out about a week ago, because she is now taking the extra calories in her foods. Although we are still struggling with her weight, we are very glad that she is now taking everything in on her own, without the NG tube...this was a major accomplishment!
One last thing that my daughter has is Tracheal Malacia (narrowing of the windpipe). She has never had any real problems with this, only she has had very noisy breathing since she has been born, in which she is now starting to grow out of, and only has it when she has a cold. I am very grateful that all of these conditions are not serious, and that she is able to get help with them. Brooke is a very bright and happy little girl that has been through very much, but she is eager to keep fighting, and hopefully someday she won't have to fight so hard.
My daughter is now 15 mos. old, and I am just learning what MDS is. I am really surprised to find that there is not much information out there on this subject. This was the only site that I found! No one will ever know what it means to me to know that there are other parents out there that are going through the same situations! I wish all the best to all the parents with children with MDS out there! If there are any kind of questions that I can answer for anyone out there, please feel free to contact me! I want to thank all the people that have made this site possible, because I would have never learned so much about MDS!
Brooke has also had to have an NG tube down her nose since she had open heart surgery to try and get the extra calories into her for the weight gain. We just got the tube out about a week ago, because she is now taking the extra calories in her foods. Although we are still struggling with her weight, we are very glad that she is now taking everything in on her own, without the NG tube...this was a major accomplishment!
One last thing that my daughter has is Tracheal Malacia (narrowing of the windpipe). She has never had any real problems with this, only she has had very noisy breathing since she has been born, in which she is now starting to grow out of, and only has it when she has a cold. I am very grateful that all of these conditions are not serious, and that she is able to get help with them. Brooke is a very bright and happy little girl that has been through very much, but she is eager to keep fighting, and hopefully someday she won't have to fight so hard.
My daughter is now 15 mos. old, and I am just learning what MDS is. I am really surprised to find that there is not much information out there on this subject. This was the only site that I found! No one will ever know what it means to me to know that there are other parents out there that are going through the same situations! I wish all the best to all the parents with children with MDS out there! If there are any kind of questions that I can answer for anyone out there, please feel free to contact me! I want to thank all the people that have made this site possible, because I would have never learned so much about MDS!
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