We retested his CK level yesterday after therapy. It hadn't been tested in 6 months, and while they don't believe it will change much they need to verify. Our last genetic test made sure he didn't have any deletions or additions to his chromosomes. If the CK remains in the same area as prior testing, we are going to do a more in depth genetic test. This test is going to test for mutations in genes that would affect muscles. Since he is progressing and no new "symptoms" are showing up, we are trying anything as there is no clear direction on where to look.
Last month we visited with the pediatric developmental dr again. We truly enjoy our visits with him as he is very optimistic and tells us more of what he is doing versus what he isn't doing. He ensures we have all the resources that we need for Corbin to succeed. He is worried about the extensive therapy Corbin will continue to need and the length of time it may be required. We are working on a plan to continue to be able for Corbin to receive all the services he needs.
Some days are better than others as far as our mental stability with everything. Some days we are more optimistic than others. I know that sounds awful, but some days it is exhausting and discouraging to continue to try to help him gain the skills that he refuses to do. I have thought a lot about the unknown and the fact we still have no diagnosis and no reason for why his CK level is elevated and he is delayed. Here is what I have discovered.
I love my son 110% every day. He is perfect in every way. Most days I forget that he is delayed as he is just Corbin to me. Until I see those other perfect children and all their achievements. It is then I get discouraged. I have to continue to remember that Corbin will not catch up over night. We started therapy 5 1/2 months (he was 8 months old) ago. At that time Corbin could not roll over, would not even begin to sit up, wouldn't hold his bottle, wouldn't eat anything other than purees. We have come such a long way in those short months. Here is our latest video of working with him on how to get out of sitting without hurting his head :)
A big part of me wants a diagnosis to help explain to society why he doesn't fit their standards. At grocery stores or Wal-Mart or anywhere people are always telling us how adorable he is. It makes my heart melt and drop all at that same time. I know what the next dreaded question is. How old is he? I answer. I either get "Oh I bet he is walking all over and getting into everything! Not quite yet I respond." or "really? with a look of confusion." People don't understand when I try to say he has an undiagnosed delay. I wish I had that concrete answer to give. Why? I have no idea. I owe no explanation to them. I should be able to say no he isn't walking, he is on his own pace. He is still perfect. Please don't look at him and try to decide what is wrong with him. I hate the looks of people examining him for those little differences from him to his peers.
I hate that the main reason I want a diagnosis is for society because regardless what the diagnosis is our treatment plan probably won't change much. We were able to get Corbin into therapy and early access at 8 months old. We were able to start working on the treatment plan so early with the hope of him being able to develop to his full potential. I can't imagine where we would be with our the amazing team of doctors and therapists we have on our side.
There is a site that through Facebook (thanks Chris!) I discovered. It is called themighty.com. It is full of parents' testimonials and stories about their children and their struggles and successes. It is nice to know that even though Corbin isn't diagnosed with anything and his circumstances may not be a severe as others that there are people with the same concerns, worries, and anxieties we are facing. The unknown can be the scariest thing. One mom blogs about her daughter who is also undiagnosed. Here website is undiagnosedbutokay.com. How true!! This blog was one I could truly relate to. I am thankful for a new resource for me to relate with complete strangers and renew my hope and faith in our Corbin Jon.
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