
Well it has proven to be a very busy week in our household. Adam has enjoyed his first week at Wells Fargo! Jack has Lyme Disease. It is not as serious as it sounds, he will be on antibiotics for 2 weeks and it should clear up! And the best news of all...Tom does not have Fragile X Syndrome. As I was told the news over the phone I felt tears welling up in my eyes. I didn't even realize how scared I was about this until I found out that he was in the clear. I was not ready to give up the dreams I have for Tom to grow up and get married, live on his own, have children or do whatever it is that he wants to do. We got the results back for all of the tests and labs that we have been doing the past few weeks and everything was normal other than one of the tests that had high amino levels. He will be retested next week and if it is high again we will go see a geneticist to determine what the exact problem is. What we were told was that this would indicate that the way that Tom uses food and energy could not be working correctly, this could lead to a lot of the physical symptoms that he has been having. Either way it is a much better diagnosis than Fragile X. Adam spoke to the pediatrician yesterday when he was there about Jack and she said that 98% of Tom's problems may all come from the Autism and we may have to in the end learn to cope rather than hope to find some sort of cure. We will see what the blood test this week says. If all is fine with that we will be going to a cyclical vomiting clinic at Children's Hospital where they will focus more on finding a treatment for Tom's bouts of sickness rather than continuing to search for a reason. Apparently children with Autism or chromosomal abnormalities often have physical symptoms that can never be identified with any one condition or disease. In the end the most important thing becomes finding a treatment for the problem rather than the cause. It is hard as a mother to know that you may have to leave questions unanswered and continue to have what your child is going through misunderstood by teachers, friends, family, other parents and even doctors. As I am discovering more about the Autism spectrum and particularily PDD-NOS (pervasive developmental disorder- not otherwise specified) it seems that there may always be more questions than answers and we will just have to learn what we can and do the very best that we can with that knowledge. All in all it has been a great week, Lyme Disease and high amino levels included. We will celebrate with an indoor pizza picnic party tonight(Tom's idea). Goodbye for now. Thank you to everyone that has prayed for us and thought of us- I know that it has made a difference.
2 comments:
Congratulations on the no-fragile X syndrome!! This is terrific news for you and your family. I truly thank God for this. Also, hang in there with Jack and his lyme's disease, Natty had it too this summer, and thankfully all is well now. :) It's scary, but thank goodness for antibiotics. Again, So glad to hear about Tom!!!
All this technology blows my mind,definitely not from my generation. I get lost easy.
So glad Tommy has jumped the hurdle and did not have Fragile x. To us he is like other little boys, and does what other little boys do.
He is happy and so is Jackson and are fun to watch grow.
Post a Comment