Monday, August 6, 2012

Where to Begin..

Hey everyone, hope that everyone is doing well. It's been a long while since I last updated. Our little guy is just growing right before our eyes. He is truly a blessing from God. He will be 8 months old on the 14th of August.

He has such a happy and wonderful personality. He is oficially saying "mama" and making all kinds of faces and noises, playing with new toys, and sitting up for a little while on his own. He isn't crawling or getting on all fours yet, but we work on that daily. His physical therapist is just awesome.

A couple days ago we had a feeding specialist come out to our house and she watched Gunner eat the first stages of baby food and his formula in all different ways (through a bottle, a spoon, a syringe) and she said that something is definitely going on in her opinion with the swallowing of his baby food. His tongue is fused to the bottom of his mouth so he chokes and gags food down. Gunner doesn't have a problem eating with a bottle and I mentioned that, but she said that the nipple on a bottle is so long that it puts it in the back of his throat and all he has to do is swallow, he doesnt have to lift his tongue to push it back then swallow. So, she said that there would definitely be a need for a swallow study to be done to see what exactly is happening when he swallows and HOW he swallows, which brings me to the next thing...

We went to the Children's Hospital in Oklahoma City last week and saw a ped GI. He was very knowledgable about EB which was refreshing to us. (Not many doctors know or understand EB, we often have to explain to them and they get suggestions from us). He ordered a swallow study to be done, he said that he didnt feel like it wasn't as urgent as he thought since he is still getting great nutrition from formula, but wanted to get it done soon. He is going to call the Children's Hospital in Colorado that we go to every 6 months (EB specialists are there) and see if he could have them do it up there when we go. I am waiting to hear word on when and where they are going to do it. I am thankful that they are finally going to find something out.

Cody is working right now in Minnesota, this job is about 6 weeks, he said yesterday that they are confident that they will get done sooner. I'm ready for him to be home. Gunner misses him badly as do I. We need a family vacationg bad. Just to get away from everything. We will probably go somewhere close when he gets back. Just us three. Gunner and I are even considering going with Cody on the next job if it is short and in a cooler state. :) That would make us all three happy.

I recently had to quit my job, Gunner had an infection that was getting pretty serious. The company was so amazing and understanding! I can go back if/whenever I am able to. I liked to work, but my baby needs me more. And I will do anything and everything to protect him.

Last week I got a tattoo to raise EB awareness EVERYWHERE I go. I got it on my left wrist so that it can be seen and people will ask me about it. :) I love it. It says "For my Son, For the Cure"

He is looking more and more like Cody everyday. I love him and Gunner to the moon and back. They are my life. Cody and I are thinking about finally getting married soon. I am so ready, and BLESSED. (In caps because I am screaming at the top of the hills that I am BLESSED) BLESSED to be marrying my best friend, the father of my son, someone who loves me at my worst and my best.

Recently there have been many wildfires across Oklahoma. Many have lost their homes and everything along with it. My grandma and grandpa thankfully have a home still, but they are without electric as powerlines and poles have fallen down and burned. While the electric companies are fixing this problem, they are staying with me and Gunner. Gunner and I enjoy it as do they.

Thank you everyone for reading! Until next time! :)