I thought it might be nice to do a little update on Clay and how he is doing with his diagnoses of Salt Wasting CAH (congenital adrenal hyperplasia). I don’t want to back log all that happened, you can read it by clicking the link above to see what originally happened at 1 week old.
CAH is a genetic disorder. A group of genetic conditions limiting hormone production in the adrenal glands. Congenital adrenal hyperplasia affects a child’s normal growth and development. Although it can be life-threatening, most people with it can lead normal lives with proper treatment.
Clay has been seeing his endocrinologist in Wichita every so often, and she is teamed up with his pediatrician, so they both are aware of his condition and work together. It is so nice to have doctors who are taking really good care of him to ensure he is growing properly and thriving! We know how serious his condition is, and it is imperative that he sees the doctors regularly to ensure he is doing good.
Clay is doing amazing, he is growing good and responding well to his hydrocortisone and florinef, and is in the correct ranges of his potassium and sodium, and other levels. With salt wasting it is hard for them to maintain proper levels of potassium and sodium. The potassium is normally high and sodium is low, so with the help of the medication it helps level him where he should be! To check his levels he gets blood work to look over potassium, sodium, renin, and other important levels that are affected by the condition.
He has been able to start tapering off his florinef which is amazing, and they up’d the dose of hydro as he has grown and it is based off his height and weight!Our specialist has said he is doing an outstanding job, and just keep doing what we are doing! He is growing and meeting milestones like he should, and all is looking well! That is such a huge relief for us, as we know it is life threatening and it is so important he stays in the correct level ranges!
Now with Fall and Winter coming we just have to be careful with germs. If he gets sick his body doesn’t fight off things the way ours does, and he may have to go in to the hospital if he gets the stomach flu. We have not went through that yet, but we have his shot to give at home in case that happens and know the steps to take in a situation.
We are praying for healing everyday over Clay, and we know how strong God’s hands are upon him! He is one healthy strong little fighter, and we couldn’t have been blessed with a better guy!
I know a lot of you ask about Clay, so I wanted to do a quick update on what is going on! We don’t go back to the specialist till November, which will be nice! She loves seeing him, and we couldn’t ask for a better doctor than her!