Friday, September 25, 2009

Nathan's News

So, we got the news on Nate's DNA testing. It is all really confusing to say the least. I've been trying to find more information on the internet and that isn't happening. Before the test, the doctor told us the reasoning behind DNA sequencing is to see whether or not Nathan has one or two of the mutated MCAD genes to show us if he is somewhat of a more severe case or not. So after the test, I wasn't even worried about getting the results. I just KNEW that he didn't have a severe case. I felt in my heart he was just FINE. Also, from how long he was going at night without feedings and how healthy, alert, and active he was.... I just figured he was fine.
The nurse practitioner called a few days ago with the results that came in early, so i was caught off guard right away when she told me they were in. When she told me has has BOTH genes for MCAD, I was absolutely shocked. I really wanted to cry, but I was just silent. Then I asked, "So does this mean he has a more severe case of MCAD?" Her response was, "Theoretically, but we won't know until his first or second illness that makes him not eat or throw up. Every MCAD patient is different." So now I feel like its a waiting game. I don't want him to get a sickness that causes his MCAD to act up at all. However, we will not know how severe his case is until that happens. He has been sick for two weeks now with a nasty cold that turned into bronchiolitis, and he has eaten well through it all... thank you Lord! I am human and sometimes wonder why these things happen to our sweet little babies... and then I also am reminded that he is alive and well for the most part and in my arms today. God is sovereign and I know that He can still heal Nate. I also know this may be His will for Nate's life to bring Him glory through it all. Either way, may your name be praised Jesus. I know Nate is a gift!
Thank you all for your prayers! We still need them and are so grateful for them all. I pray that I will know when to act on his condition.
Now, we take Nate on November 24th for re-evaluation, check up, and carnatine levels. He will be started on carnatine (enzyme that helps him break down some fat for energy) then. Also, we will be taking Will and Abby with us because the doctor wants them to have DNA testing as well. I think its just because of Nate having both mutations to see if they are carriers , but I wasn't totally sure on that one.

He continues to be such a content and happy baby. He really doesn't cry much at all. He loves to cuddle and snuggle, my favorite!!! He is usually smiling, loves jumping in his new bouncy seat, and doesn't like taking naps in his car seat (although he is happy in it). He will be 5 months old next week - going by TOO fast! HE weighs 17 pounds now... a bruiser. Although he almost weighs as much as Abby does currently, he doesn't have Will beat at 5 months of age.

Nate is always chewing on something. Usually fingers and toys, sometimes chins and shoulders...

Here he is getting his breathing treatment. He really just wants to chew on it.

Thanks for following along and being by our side through this.
(oh, and for listening to my ramblings)


Joyful said...

Wow Sarah! We will keep praying for Gods protection and healing hand.

Mari Fontana said...

I'm sorry Sarah...I will keep praying for you and nate. As you said God is sovereign and good. His hand is behind and before us He knit Nate in your womb. Nate IS fearfully and Wonderfully made and God has a plan and a purpose for nates life. Cling to that truth. Especially when the enemy wants to cloud you with fear..

Anonymous said...

Hey Sarah!! I cant believe how big hes getting! What a handsome little boy! Even though the testing came back different than you thought he seems to be doing well...I'll be praying for you guys.

Can you send me your address??