Cooper's Update

So, I think that the actual purpose of a blog is to journal your thoughts or opinions about anything you want, but I have really just enjoyed sharing photos on our blog! But, today, I have no new pictures to share, just information about Cooper – who, by the way, is one month old now! What a great and crazy first month it has been! Some of you may not know the craziness so I’ll start at the beginning…
Newborns in Indiana are screened for about 50 genetic disorders. One of the screenings for Cooper came back borderline and led to a new test. So we did, and again the results were borderline. So, a blood draw was requested by our pediatrician, who was in contact with the endocrine doctors at Riley. But, again, the test was inconclusive! Still not knowing what we were looking for was a bit frustrating for the parents, as you can imagine! So, we had another blood test and sent it off to a lab in California.
To shorten this, we eventually got the results back only to find that the actual hormone (testosterone) levels they were testing (which they thought would come back half as much as originally tested) came back 3 times higher than before. So, we were off to Riley for one more definitive test that will tell us if he has Congenital Adrenal Hyperplasia. (CAH)
I can try to explain what this is, as I have tried to get Tim and the Doctor to simplify it as much as possible so I can understand it!
Cooper’s pituitary gland sends messages to the adrenal glands to make salt hormones, cortisol hormones, and testosterone hormones. But for Cooper, somewhere along the way the enzymes from the adrenal glands are not making cortisol, and instead those enzymes are making testosterone. Hence, the elevated levels of testosterone and the deficiency in cortisol. If this disorder goes untreated he could go through puberty as early as 2 or 3 years of age because of the testosterone. Also, without the cortisol, he will have trouble fighting infections. So, the treatment for this is cortisol hormone replacement therapy. He would have to take cortisone, daily, for the rest of his life. At times of stress (illness) he would need triple the doses.
SO! Finally getting some answers to our questions and knowing what we are dealing with is a huge relief. The doctor at Riley was very nice and spent about 2 hours with us answering our questions. We now are waiting for the blood results, which could take a week. Then we will go back, if he has CAH, in a month to learn more about the treatment.
Thank you for all the thoughts and prayers. In spite of it all, we are all doing very well. Cooper weighed 9 pounds 6 ounces today, so he is eating well!! Grace is showing more and more frustrations with me as I can’t be at her beckon-call, but I have faith that she’ll get better at it!
I’ll let you know when we know! ~shelby