Clarksville, Tennessee
We had a C-section on April 27, 2000, at 2024hrs. at Vanderbilt University Medical Center. The next morning the Pediatricians told us they thought Jackson had Down Syndrome. Genetics came that afternoon and told us they thought he didn't but would do the blood test anyway to rule it out.
We got the results back Monday, May 1, 2000, and were told he had MDS. I had never heard of MDS, but I had heard of DS. I did not plan on having any children at all because I am a Gulf War vet and was concerned about possible birth defects.
He weighed 4-12. We were told his blood test showed 60 percent trisomy. We are tired, going through an emotional rollercoaster.
He sounds like Alvin, Simon and Theodore were he makes sounds, he is so little. He picks his head up, and has been trying to hold his bottle, sometimes, during feedings. He pulls his pacifier out with his hands sometimes. No known health problems at this time.
We have been in contact with the local providers of services and have had a referral made, but that is all so far. We don't know what is going to happen, we want answers, and know we will only get the answers we want with the passage of time.
He weighed 4-12. We were told his blood test showed 60 percent trisomy. We are tired, going through an emotional rollercoaster.
He sounds like Alvin, Simon and Theodore were he makes sounds, he is so little. He picks his head up, and has been trying to hold his bottle, sometimes, during feedings. He pulls his pacifier out with his hands sometimes. No known health problems at this time.
We have been in contact with the local providers of services and have had a referral made, but that is all so far. We don't know what is going to happen, we want answers, and know we will only get the answers we want with the passage of time.
Addendum, submitted May 31, 2000 - We have had to learn so much about what our child has and what we have to do. It is unbelieveable the stress you go through. this being my first child, I am about clueless anyway, but the is my wife's second child. We have had at least seven doctor's visits, more because we were wimps more than anything else. We had an EKG done in mid May and were told that the results came back normal. The doctor told us our child just did not act like a DS child, but then he had never seen an MDS child before. Just before he turned four weeks, he had gained a pound over his birthweight. He keeps surprising us with things he is not supposed to do. It is almost kind of sad to say, but we expected so little after talking to the doctors, that everything he does is better than expected. We just hope for the best, and accept what doesn't go our way. We have to for him now.
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