Baltimore, Maryland
I am really not sure what to say. I have very recently found out my daughter has MDS, and I don't know what that really means for her. So all I can really do is tell you how I feel.
When Kaitee was born they thought she had the features of a child with down syndrome, so the blood test was done. It came back negative. I think then that I knew the test was wrong, but I didn't want my daughter to have some syndrome that would destroy her life, so I didn't' listen to my heart then.
Kaitee developed slower then her peers. She was behind in most motor skills and didn't start talking on level. Well, the pediatrician was patient with me to say the least, and at fifteen months we went to the infant toddler program, for her lack of speech. She wasn't talking at all yet and they told me we should test her hearing. They also asked about down syndrome and I told them the test had been negative, which was acceptable to them. We had also had a cat scan done to find out why her head had suddenly grown to the 98 percentile of the growth chart.
Well the hearing testing started. First it was a sensory loss of hearing, then there was fluid, then it was "has she been tested for a syndrome???"
New audiologist, first it is sensory, then the fluid was present, two abr's...... ummmmmm has she been genetically tested??
The school decides to do some evaluating and testing, results.... Kaitee doesn't really fit in any one place, she has a variety of symptoms which all fall under different dx's.... and this was the day I decided that I needed to continue genetic testing. I could not imagine growing up and not fitting in.
The one thing I was sure of at this time is how much Kaitee has grown to mean to all of us. Kaitee is a very loving child, but totally frustrated, and trust me, very frustrating!!!! She has shown me how to appreciate life a whole lot more.. to be grateful for the little things that most feel are unimportant. Kaitee is a very outgoing child, and usually accomplishes what she sets out to do, maybe it takes more tries and more failures, but she usually throws her hands in the air and says "I did it, I did it" ..... this is new ... Kaitee who rarely spoke a word in the last five months started speaking in short sentences...many are words put together not pertaining to the subject, but each is music to my ears.
Well, we went to the Kennedy Krieger Institution, and there we got an answer to where Kaitee "fit in." Didn't take long, one skin test, lots of explaining and there you have it.... Kaitee has MDS. So what does this mean for Kaitee?? Not much in my view. Kaitee is still the little girl that I have grown to love very, very much. Kaitee has the same future that she had before the dx. I don't feel that the future is unknown only for Kaitee, does anyone really know what the future will bring them??
In a lot of ways we have been darn lucky. Kaitee doesn't seem to have any heart troubles, and is a very, very happy little girl who people fall in love with easily.
We don't know about her hearing yet, these tests will continue.
Behavior problems exist, and sleep problems. Her speech skills are just emerging and taking off, she is way behind in most cognitive skills but day by day we work on these.
Kaitee attends a preschool five days per week. She loves to ride the bus.
As far as the MDS, I think when the Dr. called and told me the results of the tests, I went thru a short period of "mourning." I felt the same things that any parent feels when their child is given a label. I don't know what the future will bring for Kaitee. I don't know what the future will bring for any of my other children. I do know I will be there every step of the way offering my guidance, love and support. Oh yeah and to holler and roll my eyes and cry and laugh ........ to stomp my feet in frustration, to applaud the victories...... I know I will be there.
We have not yet seen a down syndrome specialist, so we are really just walking into the door of the world of MDS, but it is a walk we are ready to take.
Kaitee developed slower then her peers. She was behind in most motor skills and didn't start talking on level. Well, the pediatrician was patient with me to say the least, and at fifteen months we went to the infant toddler program, for her lack of speech. She wasn't talking at all yet and they told me we should test her hearing. They also asked about down syndrome and I told them the test had been negative, which was acceptable to them. We had also had a cat scan done to find out why her head had suddenly grown to the 98 percentile of the growth chart.
Well the hearing testing started. First it was a sensory loss of hearing, then there was fluid, then it was "has she been tested for a syndrome???"
New audiologist, first it is sensory, then the fluid was present, two abr's...... ummmmmm has she been genetically tested??
The school decides to do some evaluating and testing, results.... Kaitee doesn't really fit in any one place, she has a variety of symptoms which all fall under different dx's.... and this was the day I decided that I needed to continue genetic testing. I could not imagine growing up and not fitting in.
The one thing I was sure of at this time is how much Kaitee has grown to mean to all of us. Kaitee is a very loving child, but totally frustrated, and trust me, very frustrating!!!! She has shown me how to appreciate life a whole lot more.. to be grateful for the little things that most feel are unimportant. Kaitee is a very outgoing child, and usually accomplishes what she sets out to do, maybe it takes more tries and more failures, but she usually throws her hands in the air and says "I did it, I did it" ..... this is new ... Kaitee who rarely spoke a word in the last five months started speaking in short sentences...many are words put together not pertaining to the subject, but each is music to my ears.
Well, we went to the Kennedy Krieger Institution, and there we got an answer to where Kaitee "fit in." Didn't take long, one skin test, lots of explaining and there you have it.... Kaitee has MDS. So what does this mean for Kaitee?? Not much in my view. Kaitee is still the little girl that I have grown to love very, very much. Kaitee has the same future that she had before the dx. I don't feel that the future is unknown only for Kaitee, does anyone really know what the future will bring them??
In a lot of ways we have been darn lucky. Kaitee doesn't seem to have any heart troubles, and is a very, very happy little girl who people fall in love with easily.
We don't know about her hearing yet, these tests will continue.
Behavior problems exist, and sleep problems. Her speech skills are just emerging and taking off, she is way behind in most cognitive skills but day by day we work on these.
Kaitee attends a preschool five days per week. She loves to ride the bus.
As far as the MDS, I think when the Dr. called and told me the results of the tests, I went thru a short period of "mourning." I felt the same things that any parent feels when their child is given a label. I don't know what the future will bring for Kaitee. I don't know what the future will bring for any of my other children. I do know I will be there every step of the way offering my guidance, love and support. Oh yeah and to holler and roll my eyes and cry and laugh ........ to stomp my feet in frustration, to applaud the victories...... I know I will be there.
We have not yet seen a down syndrome specialist, so we are really just walking into the door of the world of MDS, but it is a walk we are ready to take.
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