Our 5th child weighing 8 pounds 7 ounces entered the world, in not the typical way. After 40 minutes of labor that came on without ANY warning, Wyatt was delivered on our dining room floor by local paramedics. His first 5 months went by so fast. Typical baby stuff sleeping, eating, you get the picture.
Then at a 5 month check up our doctor suggested we could to Children’s Seattle to find out why he wasn’t putting on weight. (At that point he was 12 pounds 7 ounces, less than 5%) The GI doctor we went to see ran all the normal GI tests that they do. He added allergy tests and on a hunch a CK level.
To make a long story short, Wyatt’s CK was 29,000, so GI referred us to Genetics. After months of tests, we got a call to come to Children’s ASAP. A counselor gave us the results and then sent our family into a tail spin of emotions.
Step 1 CK levels on our other 3 boys. Even without CK levels we were relatively certain our older boys (12 and 9) were in the clear. But our younger son, age 4, was more of a concern. Thankfully, and by luck (for the lack of a better word), all three boys have CK levels in the 100's. I still wanted to be certain, but I was assured their CK’s would be up if they had DMD.
Step 2 was for me to have a DNA test done. We didn’t get so lucky there, turns out after 5 kids I find out I’m a carrier! 37 years old, you think my preious doctors would have figured that out before now.
Now, up to Step 3 my daughter and Mom are getting DNA tests done on May 13, 2009.
The doctors are telling us that there is nothing they can do, right now. Because he is so young, we’ve been told just to sit and wait for symptoms. That’s not something that is easy for us to do. We’re not the “sit, wait and see” kind of people. Our DMD doctor told us that he has never seen a kid as young as Wyatt with DMD. So we are feeling kind of isolated. But hopefully sharing our story on this site, will connect us with other families who understand what we are going through. We are looking for any HOPE that we can get. We are hopeful that with all the research being done that our baby will have a chance. But we can’t wait, we need to do something, anything that we can now to help our son.