It's been a rollarcoaster of emotions over the past 6 weeks. From Jeb's 5 day hospital visit where the dr said, "we should test for cystic fibrosis - but I don't think he has it," to the two sweat tests that showed him 2 points from "normal" to his genetic test which showed two different CF genes indicating a possibility that he could merely be a carrier. Well, yesterday we got answers when Tom and I received our blood tests indicating we were both carriers and Jeb definitely had CF.
What is CF? I'm new at this, but here goes: A gene that produces too much sticky mucas effecting the lungs and digestive system. We believe that Jeb has a mild case and that it is only effecting his lungs - meaning the sticky mucas holds bacteria making Jeb very susceptible to lung infections. One in 25 people are carriers and 1 in 400 marriages puts two carriers together. Tom and I are one of them. We think that we are very lucky that the other boys don't have CF, but there is always a possibility. 50% chance that they can be a carrier, and 25% chance they will have CF or have no CF genes at all. It's a must that they need to be tested. A blood test is involved, but I just received an email from another CF mother saying that her 2 year old boy had the sibling test and they made it very easy.
So, tomorrow starts our official CF life. There have been so many advances in the past few years, that Jeb's outlook is great. We meet with the UK doctors at our local hospital and will determine if we go to London or Oxford for treatment. London is one of the top 3 clinics in the world and my #1 choice, but the commute is at least an hour, so we will have to weigh our options b/c of our busy lifestyle with two other boys.
Life is hard, but God is good. I can see His plan just by looking at the past two years. Finding out that we were pregnant and a week later Tom being offered this position in England. God knows what he is doing and obviously knew where we had to be. His plan is amazing and I can't wait to see where he takes Jeb. Jeb will have challenges, but there is a great life planned for my little man!
1 comment:
I'm so sorry to hear about your son's diagnosis. I was diagnosed with a genetic condition after I was married that makes it difficult to have children. It's very hard when life doesn't turn out as you expect. As a relative of Tom's (second cousin) I wonder if our relatives of child bearing age should be tested. Do you know what Tom's mutation is?
Best to you and your family as you deal with this new challenge.
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