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)
New Hair Product: Sugary Milk from Cereal = Major Lift!
Looks very modern :)
What do ya think Aunty Christy??? Am I following in your footsteps....hairdresser or maybe not??
Will and Abby were icing their cookies. They were on a sugar rush that night!
A closer look at the cookies.
Nate wanted to get in on the fun.
Abby the flower, Will the turtle, and Nate the lion.
Nate kept frowning when I would clap to try and get them to look at the camera.... it made Josh and I laugh so hard! The things we do to our kids :)
Running down to Nana's.
Abby tried on one of Josh's work gloves to give it a second chance, but she still didn't want to do it.
I made Will put his hand in for a picture... haha, mean mommy. He made sure he got it in, but didn't touch anything!
Nate just watched everyone and ate some rice cereal :)! That was his second try with the cereal. He didn't care either way. He kind of just let it all come right back out.
This is what we woke up to this morning, and it has been snowing lightly ALL day!
Abby didn't know what to make of being bundled up. She didn't move much.... such a different pace for her! It was nice for a change :)!
Abby and her friend Kylee.
Will and his friend Cayden.
I have been meaning to post pictures of the house w/ the rock gardens for a while! I wanted my mom to see how her plants blossomed, grew, and looked great! A few things died, but thats because the night she planted them, we had a late frost... go figure!
The flowers!
This back small rock bed we just put down. We haven't mulched it yet or added much to it.
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.
Looks like Nate is happy about it though!
Will is still learning that its too cold for his short sleeve shirts. But he has a hard time saying goodbye to his clothes :)!
Nate loved staring at the flames.
Excuse the hair here.... oh wait, it almost always looks crazy like this :). She needs it tamed.
And of course Will doesn't want to smile at the camera, but he made a nice looking smore.
