Good News for a Good Boy

I debated for a little while whether or not to share this with the Blog, but decided I wanted to be able to experience this with those who know and love my boy.

We had an amazing Doctor's appointment with Deak's endocrinologist this past Monday. Trust me, amazing and doctor are not usually words I place together in a sentence, but this was nothing short of extra amazing.

Many of you know we have been in the process of getting Growth Hormone Replacement Treatment for Deak for about nine months. Deak just isn't growing or gaining weight (he hasn't gained an ounce in a year, and less than 1/4 inch in 9 months), so it pretty obvious to us that he is in need of Growth Hormone treatment. Growth issues are pretty common with kids with Chromosome 18 abnormalities, so it hasn't been something super unexpected, it has just been a long process. To quickly sum up some research, it has also been proven recently that in kids who are growth hormone deficient, that cognitive ability (ie. IQ Scores) can increase (sometimes up to 30 points) when the growth hormone is replaced. Growth Hormones are also responsible for the production of Myelin in the brain, which speeds up the rate at which the neurons travel.

Back to Monday....

We got the results of an MRI of Deak's brain. I wasn't really anticipating anything with these results. Sadly, I just sometimes view these things almost "professionally", rather than get my hopes up only to be let down. I think my heart has just been through so much. The MRI results were the last thing Dr. Foster brought up, and I felt my body tense up. I had forgotten we were even going to discuss them. Any of you who have been through testing medically or cognitively, with your children might understand the nervousness. Obviously my love doesn't change with the test results, but I just want the freaking science to show what I believe my son to be capable of.

Often it does not.

Dr. Foster brought the results in, with a copy for me (she has gotten to know me a little :), and said, "There is nothing abnormal with Deakon's brain."

Just like that.

I looked at her and said, "I had a feeling that's how it was going to turn out." It was kind-of a lie. I hadn't allowed myself to have that much hope.

Then, in a very undoctorly fashion, she turned with what I think was a small tear and said, "I am just so happy for you."

I told you...Amazing.

The MRI showed us that Deak is in need of growth hormone treatment even more than we thought. His brain is not mylenating properly, and needs the treatment to stimulate production. The really good news is that as soon as we start, it will be beneficial. Nothing has been lost.

I also feel like I need to say that we are not naive to think that Deak will not have his share of struggles. The ring in his chromosome will still affect him in some ways, but it will not stop him. To quote Deak's geneticist this week, "I have a feeling that this little guy is going to keep on surprising us."

I have a feeling he is right, and this time I am not lying.