We have WONDERFUL news. Blake has a perfectly normal heart!
We weren't sure at first if we would be able to do the test today, due to the fact that Blake was completely freaked out by the whole thing and was really upset. But we had an excellent tech and an excellent doctor so they were able to get what they needed.
He will need to repeat the echo every couple years to monitor his aortic root. That can dilate at some point in the future; but for now it is normal.
Dr. Grifka was very familiar with the defects associated with Potocki-Lupski syndrome and knew exactly what to look for. He even did his fellowship with Dr. Lupski and had nothing but good things to say about TCH.
We are very relieved and feel very blessed that Blakie seems to keep beating the odds. He is an amazing boy and I can't wait to see what the future holds for him.
Wednesday, August 20, 2008
Tuesday, August 19, 2008
Tomorrow is our appointment with cardiology.
In the morning we are going to find out if Blake has a normal heart or if there is something wrong. Now that it is here I am very anxious. I feel that God put a doctor from TCH in our path for a reason; I just don't know what it is.
I have never been more scared in my entire life--and it is the kind of fear no parent should ever have to feel. I am scared for my little boy.
In the morning we are going to find out if Blake has a normal heart or if there is something wrong. Now that it is here I am very anxious. I feel that God put a doctor from TCH in our path for a reason; I just don't know what it is.
I have never been more scared in my entire life--and it is the kind of fear no parent should ever have to feel. I am scared for my little boy.
Monday, August 4, 2008
I have been doing a lot of thinking about the clinical study at TCH. I have weighed the pros and cons over and over in my head, and I just don't feel that now is the right time to go.
We would be fitting months of testing in to one week, and I think that it would be too much for Blake right now. It would be so scary and stressful and overwhelming for him. Most of the tests will have to be repeated every couple years anyway; by that time he will be 3 or 4 and he will be able to understand much more of what is happening. It will also be easier for them to evaluate his speech/cognitive abilities at that point.
I have really struggled with this decision but I feel comfortable that this is the right choice. We are hoping that we will be able to make the PTLS conference in June 2009, where we will have the opportunity to meet other PTLS families and learn much more about this condition.
Now if you'll excuse me I have to pick up all the Kleenex that Blakie just emptied all over the floor.
We would be fitting months of testing in to one week, and I think that it would be too much for Blake right now. It would be so scary and stressful and overwhelming for him. Most of the tests will have to be repeated every couple years anyway; by that time he will be 3 or 4 and he will be able to understand much more of what is happening. It will also be easier for them to evaluate his speech/cognitive abilities at that point.
I have really struggled with this decision but I feel comfortable that this is the right choice. We are hoping that we will be able to make the PTLS conference in June 2009, where we will have the opportunity to meet other PTLS families and learn much more about this condition.
Now if you'll excuse me I have to pick up all the Kleenex that Blakie just emptied all over the floor.
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