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)

Monday, September 21, 2009


Wow, its fall here but starting to feel like winter to me. The leaves are changing (which I love to see), the air smells different and feels crisp, we are pulling out hats and jackets, and have put the air conditioner away. So sad to me. Feels like we didn't get much of a warm summer this year. Season's change, right? It's a beautiful thing (other than forever long snowy months), although sometimes taken with hesitation at first.

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 :)!

Will and I built this little fire pit in our backyard and waited for daddy to get home to light it for us. It was so relaxing to sit by the fire and make smores. Will (being the cautious child that he is) would stand as far away as he could to try and roast his marshmallow... sometimes just throwing his stick at the fire... haha.
Nate loved staring at the flames.

Excuse the hair here.... oh wait, it almost always looks crazy like this :). She needs it tamed.
Abby would only eat the marshmallows, wasn't sure about the smore. Which was fine by me, she has enough energy for our whole family combined, without chocolate entering her little body.

And of course Will doesn't want to smile at the camera, but he made a nice looking smore.
Yes, its starting to get cold... but we are tryin' to keep warm !

Sunday, September 13, 2009

Pictures For Mimi

Not much to write about here. Just lots of pictures. My mom wanted a new picture of each of the kids to put in her frames that she updates every year. So here are the best of the ones I took. Not an easy task to get a picture of your children actually looking at the camera with open eyes and not weird crazy faces!

Around Here

It has been a cool summer this year and we have only gone swimming a few times. Here is one of the times that the kids were in the creek.

Abby is enjoying the fact that she can do it without me holding on to her.

Will has gotten really good at swimming on his own with his life jacket. They enjoyed going down the slide into the freezing water.

This is the corn from our garden. We loved it.
I wasn't big on corn on the cob until this year. I couldn't get enough of it.

Abby with a messy face as usual.

Both Josh and Will could eat corn on the cob for the entire meal!
There's a little taste of whats going on 'round here.

So Last Minute

It's been a month since I've last posted and its because I went away and since I've been back I have been trying to catch up on things. I heard my dad's soccer team was in the national championships in Richmond, VA - so I decided to make a trip down and see family and the game all in one. Well, before I left I had this uneasy feeling that it was going to be a hard trip and was really close to canceling - but decided to go because Will was so excited!.....Well - it was the worst trip in the car in my life and I'm so thankful I have the best husband every who flew down to help me drive back :)!!!!!

We had a great time staying at Jen's and seeing her family. We also surprised my mom which was SO fun because she was shocked. I just love surprises!!!

This was at a park we played at one day.

Will and Lauren at the park.

My little monkey swinging.

Will and Abby loved playing on this thing... don't even really know what it is called.. but they loved it.

Then going to the soccer game I got lost and was driving circles in and around Richmond.... oh what fun with a hungry baby who NEEDS to eat. Thankfully we made it safe and sound. The game was fun to watch and Will actually had a little attention focused on watching too. He ate his first snow cone w/ his cousins and when it was time to throw Frisbee on the field.. he threw one right into the back of the kids head in front of him...oops.. but really funny!

Sweet Nate hanging out in the pack-n-play.

Will Josh and Lauren playing dress up.
We had a great time. Thanks Jen for letting us come at such short notice.