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.

We are thankful for friends and family

DAY ONE!
NOW AT 11 MONTHS


What I am thankful for this Holliday season is to be together with my kids. Last year at this time, Shanna & I were getting ready to leave for SLC to go to our appointment to see the OB/GYN on Nov. 24th. Shanna was going to stay at the hotel by herself for two weeks while I came home to be with the kids. The plan was that Shanna has family in SLC to keep an eye on her and we wanted to keep our kids in school as long as we could. The day of the appointment Shanna started having contractions. She was 32 weeks along and Ashton’s lungs hadn’t developed yet. She was put on, Nifedipine to stop her contractions, and given steroids to help move the lung development along a little faster. Everyday we were on edge keeping Shanna rested as much as possible, so that she didn’t go into labor. A month we were in the hotel before Ashton was born. We saw our kids on two separate occasions for about 2 hours each time in that month. Long story short, Ashton was born, he had surgery and we were out of there in time to be home late on Dec. 23rd. What a Christmas present. When we walked through the door, we found our living room to be full of presents. What a wonderful night that was to be together again at home. I am thankful to be home with all of my children! The Garth Brooks song the Dance comes to mind tonight. I could have missed the pain, but I’d of had to miss the dance. My testimony has been strengthened a great deal this past year and I owe it to a lot of people. My family could not have made it through this last year alone. So many people have helped in so many ways. I am thankful for good friends and family and I am glad to have Intermountain Healing Hearts and the families who support each other. I felt so alone at this time last year and now I know that I am not alone.
Happy Thanksgiving Everyone,
Nathan

Not getting over this ear infection

Ashton’s nurse has been at the house the past couple of days and has spent a lot of time holding him. He started the new antibiotics 6 days ago and we aren’t seeing any improvements (20 days of antibiotics all together). He still is having an occasional low grade fever. He is still pulling at his ears also. His doctor’s “usual” nurse is out right now, so we are working with the front desk to see about getting him in. This is different as we are not used to making an appointment through the front desk nor have we ever taken Ashton through the front doors of his doctor’s office. They tell us to go through the back to avoid getting him around any of the sick kids. They take good care of us and we are missing Glenda, the pediatricians nurse. Ashton’s home health nurse commented to me today that she felt like he needed to get in by tomorrow to see about getting an antibiotic by injection. The oral just doesn’t seem to be touching this ear infection. I was hoping to avoid the shot, but I’m getting concerned about him not responding to these antibiotics with MRSA getting worse.

I forgot that we changed insurance companies for prescriptions this year. I have been so confident about how the insurance paid 100% of his Synagis shot all last year. Then I got the run-around this time and realized that we were working with a new company. I just told the insurance guy when he called that I thought that the insurance he had last year realized that paying for the Synagis shot would potentially save them money in the long run. Then I told him that he has had 3 heart surgeries and he called me back a little later and said that it was approved 100%, so we go in tomorrow for that shot. I guess if emotional explanations don’t work on them, then there is always the old money issue to fall back on. In…it is going to cost you a lot more than this is he gets sick and goes to the hospital. That I guess they understand!

Even though he is not feeling 100%; that isn’t slowing him down much. He is all over the place. I had run upstairs for a minute and when I came back down; he had grabbed a hold of the edge of the entertainment center and pulled himself up part way so that he was up on one knee. Then he wasn’t sure how to get that leg back down again and was looking a bit scared when I came back down. The look of despair he gave me was so cute!

Still sick

Ashton went to the doctor today as he was just not looking right. We have an RN that comes in 3 times a week to help me out now and she commented to me that he didn’t look like he felt good. I had been noticing since last night that his coloring was not what it usually is and his SATS have dropped some and his eating is not what it needs to be. So he went to get checked out. He either has an ear infection or still has an ear infection. Normally this wouldn’t be such a concern to us if it was one of our other kids. They are stronger and able to fight such things off. However, Ashton just finished an antibiotic and now he is starting another one that is supposed to be stronger. On the news they were talking about a “supper bug” that is going around.

This is what I know about the supper bug.

MRSA’s resistance to antibiotics has earned it “superbug” status. It is responsible for more than 94,000 infections and 16,000 deaths annually in the U.S. alone, according to recent Center for Disease Control reports. Those numbers indicate it is a greater health threat to Americans than the AIDS virus.

The spiking MRSA death toll recently reported by the Center for Disease Control presents formidable motivation to move infectious disease research ahead, and to get life saving nanotechnologies into the marketplace. University of Idaho scientists are focused on both goals.

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The Idaho Department of Health and Welfare says it is not a reportable disease; therefore doctors are not required to notify the health department when they diagnose cases, and schools are not required to notify parents.

Health and Welfare is considering changing those regulations in the upcoming legislative session.

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After reading these statements, I now know that it is serious and it is not required that it be reported. Yet I know of 2 cases in Idaho where MRSA has been reported in 2 different schools.

My point being that it worries me that Ashton is on antibiotics for the second time in the last month and the season is just getting started. With 4 kids attending school, this potential threat worries me.

Ashton is scheduled for Saturday to have a Synagis shot for RSV and he will receive 5 shots all together for the season.

The other concern we have is that all of the other boy’s have had tubes in their ears. We don’t want Ashton to have to be put under again for something like that.

Ian Pearson and His Family Fought a Great Fight!

Ian Pearson had to leave his family today when his body could no longer continue to fight. This little boy and his family have touched many lives.

There is an account set up at Wells Fargo that you can make donations to. It is very easy and you can just say it is for the Ian Pearson fund.

Please Keep them in your thoughts and prayers at this time of loss.

Nathan

Halloween Night

Ashton is a little pea in the pod
He traded his bink in for a sucker!

Halloween Night at the Church

Sham as Cinderella
Devin (Darth Mall) Dakota (Dracula) Dalton (Robin)

SMASH (Student Making Activities and Service Happen) answered the call.

The art class kids covered up a tagged fence across the street with their own mural. It didn't take 40 Junior High School students long to deal with months of graffiti.
The students painted pictures depicting school pride, world peace and favorite cartoon characters over nine fence panels covered with graffiti.

Shamra in the green jacket. This article was on the front page of the local news paper.

Off to Logan

I mentioned that Ashton had an ear infection and that he came home on oxygen. I guess they think he might have something going on in his upper respiratory as well. We have all had the stomach flu in our family and it looks like he may be getting that also. It is so hard to tell how Ashton is doing sometimes. He has to be nearly dead before he stops smiling; other than when he is hungry, the whole neighborhood knows when he is hungry:-) We have a scheduled appointment with his cardiologist in Logan tomorrow, so that is perfect timing.
We'll see what Dr. Tani has to say.

He has an ear infection

Shanna took Ashton to the ER last night around 2 am. He woke up screaming and we couldn’t get him to stop. With the force he was exerting, we were really concerned about the stress he was putting on himself. It turns out that he has a bad ear infection. He was admitted to EIRMC last night and has been on IV antibiotics. We think it is due to the stress, but his sats are down so they have him on oxygen. His pediatrician is on hospital duty tonight so Ashton is going to stay there at least until Dr. Groberg gets to see him. We are expecting to have him home tonight though.

As a side note: we tried working with a health care provider to have some nursing assistance in the home, but after two Aids, it wasn’t working out. So that company referred us to another company. I met with one of their nurses who did the assessments regarding Ashton’s needs. After some discussion, they called me back and told me that they felt that it would be more appropriate to have an RN come into the home rather than an aid. The RN can administer med’s, adjust O2, or in other words they can do anything I would normally do. An Aid is not able to do much more than feed him, rock him and play with him. I think this will be nice to have help; it will just take some getting used to. She has worked with several “high risk babies” in her career so this helps comfort me a little. I think it may be hard to turn things over to someone else, but it will be good to have a chance to take a break or get some things done that have been on hold for a while.

Moving to Blogger

Ashton has had a Carepage since before he was born www.carepages.com ashtonhardman
Some of the people we know as well as those who we are just aware of and praying for, who have children with a similar conditions to Ashton, have posts here on blogger.com and we would like to make our friends aware of them and ask that you keep them in your hearts as well. Shanna and I have received so much support from so many people; some we have never even met. Our hearts are full of love and compassion for all who spend so much time on the emotional roller coaster.

If you have not seen Ashton's carepage, it is still up. This just seems to be more convenient as you don't necessarily have to have a user name and password to read the posts.