Ashton got better and we made the trip!

I wanted to post this and let everyone know how special Ashton has been to my family.

For those of you who have been checking in on us for a while, you know that I struggled for 19 years to quit smoking. It wasn't until Ashton came along that I felt that I had to quit so that I didn't cause him more problems than he already has with his heart defects. So I quit when he was born. He is now 15 months old and I was finally ordained an Elder. I am going with my wife to interview for a temple recommend tonight and plan to get sealed in the Idaho Falls temple within the next couple of weeks when all of our family will be here. Shanna and I were both married before and she had 2 children before we met. Being able to be sealed to them has been a concern to me for a long time. This weekend, while out in Vernal to be at my nieces baptism, we were able to visit with my daughters biological father and after a total of about 4 1/2 hours and a lot of hesitation, he signed an authorization for us to be sealed to her. I have not been able to adopt her, but what a relief to know that she will be ours forever once we are sealed. We are anxious to meet with our one son's dad and go through the same process, but it is a relief to have one down.

What a blessing this little boy is in our lives!
Nathan

RSV!

Ashton has had a cough and a runny nose for a couple of days and his energy has just been lower. So Shanna and I took him in to the doctors yesterday to have them take a look. He has an ear infection in his right ear. They ran a culture on him for RSV and it came back negative. Then they called me this morning and said that they had let that culture overnight and it was positive this morning. His sats were 70 % at the doctors’ office but his coloring was still good so we planned on watching him and putting him on oxygen if he worsened, but now he is going to have to go on O2.

He has been doing so good too. We are supposed to go out to Utah this weekend for my nieces’ baptism, but I don’t know if we are going to be able to do that now. I guess we’ll have to see how things develop.

Keep him in you prayers if you will.

Nathan

He's Walking!

Ashton is all over the place. He is walking everywhere now and He also loves to play on the computer.

He is so fun!

Trip to Cardiologist

Well this has been an interesting last few days. Ashton’s sats dropped considerably starting last Wednesday; this raised enough concern that he spent Thursday and Friday in the hospital in Idaho Falls. He was on 2 liters of oxygen and his sats were in the low 80’s where he is normally around 90% without oxygen. His nose was stuffy, so we had to keep suctioning him. He has rebounded for the most part. Last night, he ran a high fever and his heart and respiration were really rapid. He took some Tylenol about 3 a.m. and settled down for Shanna and myself to take a catnap before getting the other kids up and ready for school.

Ashton and Dad made the trip this morning to his scheduled appointment with his cardiologist at PCMC. For the most part, Ashton was like a new man this morning. We were told that his lungs look good and have improved since his last appointment a couple of months ago (not so wet). Something that I learned about was white blood cell count. I thought that when he was sick that he should have a high count, but when he was in the hospital last week, his white cell count looked good. The cardiologist told me today that when he has a virus it is somewhat more reassuring when his white blood cell count is not elevated as this reflects that it most likely is a virus; whereas a high count can reflect something bacterial.

I learned a lot today….more than I can take time to post, but for a dad who is always concerned, I continue to better understand the process of Ashton’s condition and what can be expected through illness. I think it goes something like…I panic and the doctor’s reassure me that it is normal and then I panic some more.

After his appointment, we got in touch with Alex’s Dad and then went to the parent resource center, to use the computer, and there was Brynn. She filled me in on the IHH meeting on Saturday and how Alex is doing. It was nice to visit with the Homers. I was hanging out for a few minutes to get a hotel through Priceline after Brynn went to check on Alex and Pat (a social worker) came in and we visited for a while. She filled me in a little about Intermountain Healing Hearts as well. We reflected on how IHH is what Shanna and I were looking for when Ashton was born. There was another organization that we were told about, but we found it wasn’t active any longer. Intermountain Healing Hearts is a good resource and the board members are working hard to structure the organization in a way that it will be around for a long time. We appreciate all of you!

I am so tired from lack of sleep and the horrible driving conditions through the Malad pass this morning. I ended up coming to a dead stop on the freeway and then inching off the shoulder…listening for the sound of the tires going over the rough part that they put on the side of the road to wake people up when they start to go off the road. I was glad to see the car behind me come to a stop also. We took it slow and made it in one piece. Salt Lake City is cold but the sun is shining.

This has been a good day. Ashton has been so cute playing here in the hotel tonight. He was playing by the closet doors that are mirrored and thought he was pretty funny. He was right…he was pretty funny!

I want to thank those of you who donated to Intermount Healing Hearts, per my request. Know that this is helping get things going. The organization has received an official status as an organization who is registered in Utah. They now have an 800 number and P.O. Box and they are currently awaiting approval of a 501 (c)3, non-profit status . The website is being developed and more families are joining daily. This organization is so important for families. I know from those I have talked with, we all appreciate all the support we receive, but it is nice to be able to talk to someone who can relate with our situation 100% and IHH makes this possible. It is important for the parents and the CHD child, but summer camp is also scheduled and will host activities for the other siblings in the family. They also need someone who can relate to them and the difficulty they face by getting placed on the back burner at times.

Nathan

A "clip" of Ashton's 1st haircut

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

Watching TV & Playing

Ashton thinks TV is the greatest invention

First find something to steady yourself. Then start to stand. If you get stuck…then just fall down and try again.