Building & Strenghting the family... one day at a time!

Sunday, December 9, 2007

This is kind of long, but I just wanted to recap this last year.

I have to tell you the cutest thing! I was sitting at the table with my son Dalton (my 4 year old) on Friday talking about what we want for Christmas. I was teasing him a bit about all of the stuff he keeps saying he wants. Well we had an ad from Circuit City on the table and I was showing him all of the things I wanted for Christmas and he told me that I should let Santa know what I want. I told him, but I don’t want it from Santa, I want you to get it for me. He looked off for a moment as he was thinking, then he looked back at me with a confused stare and said, but I don’t know how to fly reindeer! He is so fun. It has been nice to have an RN come in to help me with Ashton. She does an awesome job and he loves her. She is the first person that we have felt totally comfortable in leaving Ashton with.

I’ll get another short video of Ashton soon. He is getting stronger and stronger everyday. Just about 3 weeks ago, he wasn’t very steady to sit up on his own. Now he is crawling all over the place and can pull himself up to stand along the side of the couch. It is amazing to see how far he has come in a year’s time. He will be 1 year old this Friday the 14th. We have been through 3 heart surgeries, 2 life-flight’s, multiple ER visits and hospital stay’s over the last year. He was on so much medication at one point that all I was doing is giving him med’s, mixing up a bottle for him, giving him breathing treatments and trying to get him to sleep for any period of time. When he went to sleep, I would chart everything. I monitored his intake and output, Sats, respiration, weight, all of his caloric intake, check the foods he ate to see which are highest in Potassium and Calcium as these are two of the three components that make up the electrical impulses in the body. Where he is on Lasix, it is important to put more of these components back into his system. I have learned about the importance of “good fats” in an infant. The fats that are stored in our bodies as an infant are the fats that our bodies will more readily store throughout the rest of our lives. He doesn’t need the wrong fats to find a home around his heart as he gets older. We have spent many hours in stretching and strengthening his muscles on a daily basis. I would have to work-in his exercises throughout the day to try to keep him from getting so fatigued. Just like many of us, he hated to exercise so he would do the same thing that I do when I have to exercise; he screamed the whole time. Finding a balance in not over exerting him, losing calories and yet making progress is quite a balancing act. Not to mention the times he would get sick and set him back. To see him where he is now is just amazing.

In reading about many of these heart babies, the one thing I have noticed that they have in common is the ability to smile through their trials and to keep fighting.

One more thing! We drove out to Iona (a small town just on the outskirts of Idaho Falls) last night to see this house we were told about. They have put together a light show like one I have never seen. I can’t remember all of what they said (we tuned our radio into the station they are broadcasting to hear the story about setting up the lights and the music they played) but I remember they have a mile of extension cords and 288 dimmable and programmable boxes that are wired to one or more strands of lights. The lights flash to the music, but the lights don’t just flash on and off. I’m going to go back out there and take my camcorder and try to record some of it. It’s a lot of fun! They were asked by some of the people in the community if they would take donations, so they agreed that they would try it this year, so they have set up a fund for Primary Children’s. I don’t know if I’ll make it out tonight or not, but keep an eye out and I will post a video clip of the show.

Nathan

3 comments:

Andrea said...

I remember you guys from the PICU. We never spoke but I can remember seeing you across the hall from us in your rocking chairs. How far he has come. It is amazing what these little ones can do. Congratulations on your hard work Ashton!

Andrea Mathis
(Andrew's mom)

carolyn q said...

Hey,
Just thought I would check in with you and see how things are going.
Hugs,
Carolyn

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