October 21, 2012 - On a Roll

A lot has changed since I last wrote. Being in school full-time has made it difficult for me to find the time to write. Between Organic Chemistry, Physiology, Biology, and all of their labs, I hardly have time to do anything other than study. I guess I had better get used to it.

The last time I wrote, Aiden had been off oxygen for a couple of days. He did really well for about a week and then he picked up a virus and started struggling again, so we had to put him back on oxygen. About a month ago, he was doing really well and we decided to try taking the oxygen off again. Other than a few times when we had to put him back on for a few hours, he has stayed off. It's so nice to not have to lug heavy oxygen tanks around with him wherever we go. And you can tell he feels so free. With his newfound freedom, he has really begun to come out of his shell. He crawls around our house at a million miles an hour, getting into everything and trying to keep up with his brother and sister. He is such a happy kid. He is always smiling and making happy noises. He is an absolute joy to have around. I don't know what we would do without him.

We took Aiden in for a follow-up visit with his pulmonologist up at Primary Childrens Hospital a couple of weeks ago and he did a bunch of tests to see how Aiden was progressing. He was very pleased to see him doing so well and his lung x-rays looked much better than before. There are still a couple of other tests we have to have done, but he is really improving. We are so encouraged by his progress.

It won't be long until Aiden is walking. He can stand on his own without falling for quite a while now (he gets a huge kick out of this and laughs and claps while he's standing there). He can walk along while we hold his hand pretty well now. I don't think it will be long until he's walking around on his own.

Sky is doing well at school. He loves his teacher and is having a really good time. He is also taking piano from Kandice Gardner. He likes the idea of being able to play the piano, but so far he's not very thrilled with the idea of practicing. He is getting much better, though. He's a really good big brother and enjoys playing with Jazzy and Aiden. He's getting pretty excited for Halloween. He hasn't totally decided what he wants to be yet, but he can't wait.

Jasmine is working her way out of her "terrible twos". She's almost three and a half, but she has a little bit of terrible left in her. We're hoping the terribleness ends before she turns twelve. She so darn cute, though. She loves her grandpa. Whenever we go to grandma and grandpa's house, she is always so excited to see him. She loves talking to him on the phone, too. She loves her grandma, too, of course. She loves spending time with her and having grandma read to her. But Jazzy and grandpa have a special bond. She is in a dance class at the Legacy Center and she absolutely loves it. She was feeling left out because Sky was going to school and she couldn't, so since she loves to dance around the house, we sent her to dance class. Now she goes to "school" too.

Amaraa's mom is coming to live with us again this week. She went home to Mongolia for about six months and she will come and stay with us for a while now. Amaraa and the kids are really excited for her to get here.

May 22, 2012 - Day #2 Without Oxygen!

Aiden at the hospital

I'm dead tired, but I couldn't go to bed without updating the blog with our family's recent developments. I'm back in school full-time. I changed my major from Computer Science to Biology and am working on my prerequisites for dental school. Since I was laid off from my job in January, I haven't had much luck getting a job in computers, so I figured I had better do something else with my life. It's not exactly the course I envisioned my life taking, but I'm gradually getting used to the idea. And as I get used to it, I am getting more and more excited about it. Anyway, this summer is a nightmare because I'm taking both the Physics and Chemistry Series in the condensed block program. It will put me a year ahead if I can make it through, but it's stretching me to the limit.

Amaraa is doing hair and other services in our salon at our house again. Aiden has been doing better recently and he's a little bit easier to take care of now, so that allows her to be able to do it. And with me in school full-time, the money doesn't hurt.

Skylar's finishing up first grade. Only one more week to go!  Jasmine is having fun playing with her friends in the neighborhood and she's growing like a weed. She keeps us laughing, that's for sure.

Aiden breathing without a cannula

Aiden was doing really well until about two weeks ago. He was able to go for short periods without his oxygen and one time even went about 45 minutes. We were really encouraged and he seemed to really be improving. About two weeks ago, he started with a little cough which gradually grew worse. We took him to church with us for the first time on the 13th. We didn't let him interact with other kids or anything, but he did really well. His cough got worse and worse and we kept having to turn his oxygen concentration up so he could breathe. Last Friday night, he had a miserable night. We decided to take him in to the Instacare on Saturday. The doctor took one look at him and said "get this kid to the hospital." We took him to UVRMC and they admitted him. It was the same scenario as the last time he was in the hospital in January. They gave him a bunch of breathing treatments and watched him closely for a couple of days. We took him in at just the right time and they were able to get ahead of the problem before it became serious. Yesterday, he was doing so well that they took him off his oxygen. He did fine without it and so they left it off. They discharged him this afternoon and we brought him home -- WITHOUT OXYGEN!  You can't believe what a huge thing that is. He may need to go back on it periodically, but he is doing great!  We're just watching him close and hoping for the best. If he can breathe without the oxygen, he can start living like a normal little boy. We are so excited for him!

March 25, 2012

A lot has happened since our last post. On Aiden's birthday, we had a family birthday party for him at my parents' house in Price. It was a lot of fun. Everybody had a great time. We had sloppy joes and cake and ice cream. Interestingly, as soon as he turned one, we started seeing significant improvements in his progress. He started to respond to us and his environment more, and he seemed much healthier. He seemed like a totally different kid. Just as he was making these improvements, he got ear infections in both ears and was set back a bit. Now that his ear infections have cleared up, he has been showing more and more improvements every day. He has been sitting up on his own for a week now, and he is making other progress as well. It just makes me so excited to see him developing day by day. Since I am out of town during the week, I see huge progress when I come home on the weekends.

Skylar lost his first tooth on March 9th. It had been loose for a while and when we saw that the tooth underneath it was growing in at about a 45 degree angle, we knew we had to get it out. We encouraged him to keep wiggling it and finally, Amaraa grabbed it and pulled it out. Skylar was so excited that he could put it under his pillow for the tooth fairy. He even wrote her a note to go with it so she wouldn't miss it. He was thrilled the next morning when he found a dollar bill under his pillow. That night, he was brushing his teeth before going to bed and a second loose tooth fell out. Two teeth lost in two days! At this rate, the tooth fairy will go broke before Sky loses his last tooth.

Jasmine is showing signs of outgrowing the terrible twos. She is still terrible, don't get me wrong, but she is also manifesting more of a sweet side. She randomly comes up and gives us hugs and wants to cuddle more. She also says "I love you" and other similar things more often. She still doesn't listen to us and enjoys causing trouble, but these latest developments are giving us hope. In her defense, she's not three quite yet. It's just a good thing she's cute...

Last Sunday, we decided to sing Mongolian karaoke as a family -- something we like to do quite often. Amaraa was more camera happy than usual, but I didn't think much of it since she records me singing a lot during our karaoke sessions. Later on that night, I was checking Facebook and saw that she had uploaded the video of me singing to YouTube and had shared it on her Facebook wall. Normally I would have taken it down, but by the time I found out, a lot of people had already posted some nice comments about it. As I watched the comments come in, I started getting excited about it too. Several of Amaraa's Facebook friends shared it on their walls, and the number of views were increasing pretty rapidly. I got almost as excited about it as Amaraa was. By Tuesday night, the video had 307 views. I couldn't believe that many people had watched it. On Wednesday morning, I checked it again and it had 1,047 views. It had tripled overnight!  I thought it was a typo. The number of views doubled on Wednesday to 2,152. It was crazy! Tonight, just as 5:00 PM rolled around, making it a week since we posted it, we rolled over 4,000 views. I can't believe it. And all the comments so far have been positive. Anyway, if you haven't watched it yet, here it is:

March 4, 2012 - Happy Birthday, Aiden!!!

One year ago today, our little boy entered the world. It was a rough entry (check out the blog entry from that day here), but we're sure glad he's a part of our family. It hasn't been an easy first year. He has been through a lot and continues to struggle a bit, but he continues to persevere and brighten our days. His happy little smile makes every day worthwhile.

Aiden spent five months in the Neonatal Intensive Care Units at Utah Valley Regional Medical Center and Primary Children's Hospital. He was cared for by an army of wonderful doctors and nurses to whom we will be forever grateful. Among these to whom we are especially grateful are Drs. Wyc and Anna Cheatham and Dr. Erick Gerday. They were not only Aiden's doctors but, along with many of the nurses and respiratory specialists, also became lifelong friends.

Aiden is still on oxygen. He has daily breathing treatments. When he was in the hospital the last time, they increased the dosage on his medication and were able to decrease the volume of oxygen he was being given by half. Unfortunately, he has been sick almost constantly this winter with one cold after another, so we have had to keep it up at the prior level most of the time.

It was also a year ago today that I nearly lost Amaraa. She underwent two surgeries and had to be given 33 units of blood, but she finally made it through. I am so thankful to Dr. Cameron Anderson and Dr. Tracy Hill, and all of the other doctors and nurses who worked tirelessly for ten hours to save her life.

As time passes, we have forgotten many of the worst parts of our experience this past year. I'm thankful to a loving Heavenly Father who created us that way. He has been with us throughout the whole experience and has truly carried us through the majority of it. It's easy to look down and see that single set of footprints in the sand and feel abandoned when everything's going wrong, but it is at those times when the real miracles happen.

Happy Birthday, Aiden!  We love you, buddy!

February 5, 2012 - 337 Days Old

Here we are again. We got Aiden home from the hospital on Tuesday. It turns out he had two different viruses -- viral pneumonia and another virus that made it hard for him to breathe and caused wheezing. Poor little guy...he's been through so much. At first, they thought he had bronchiolitis. We knew he didn't have RSV (one type of bronchiolitis), but they said there are several different viruses in the same family that he could have. After running all of their tests, they found that he had pneumonia and this other virus instead. While he was in the hospital, he was able to get Synagis, the RSV antibody shot. It doesn't prevent RSV, but it makes it so that if he does get it, it won't be as severe. We had tried to get it for him before, but our insurance wouldn't pay for it. It costs about $2000 per series, but if you consider what the cost would be if someone as fragile as Aiden got RSV, it's definitely the cheaper option. Anyway, because of this last hospitalization, the doctors were able to make the case and get it approved. Aiden will need one shot per month for the duration of RSV season, and he'll need it again next year. But if there was anything good about Aiden being sick, that's it.

I'm still looking for a job. I'm waiting to hear back from a job I interviewed for a couple of weeks ago. The interview went well, but they haven't hired yet, so I'm still waiting to hear. I'm applying for other positions as well, but the job I'm waiting on would be ideal. In the meantime, I'm working for my dad's construction company in Price to make ends meet. It would be nice to find something closer so I didn't have to be away from my family so much. I'm grateful to have the job, though. I don't know what I would have done if I hadn't had that option available to me.

Skylar and Jasmine are doing well. They're both getting over bad colds.Skylar still loves school and is doing well. Jazzy is such a cute little girl. She constantly cracks us up with the things she says. She calls me "Eugene" and herself "Rapunzel" (from the movie Tangled). And this morning she started calling me "honey". I don't really know where she picked that up since neither Amaraa or I say that.

January 23, 2012 - 324 Days Old

I have heard from several followers of the blog that I need to get my act together and write another post. I must admit, it has been too long since I have posted. Unfortunately, I am writing this post from the hospital where Aiden has just been admitted. Over the past week, he has come down with a bad cold and fever. Amaraa took him to the doctor on Thursday and he sent him over to the American Fork hospital for an RSV test. Fortunately, the test came back negative. The next day, they went back in to the doctor who found an ear infection and prescribed an antibiotic. Over the weekend, he seemed to get worse and was coughing much more. He wasn't sleeping well, his fever didn't get better, and he refused to eat. We had a follow-up doctor's appointment scheduled for today. The doctor checked him out and felt like he needed to be admitted to the hospital. At the hospital, the doctors checked him over and ran a bunch of tests. We still don't have the test results back, but they are thinking he must have some other form of Bronchiolitis. They suctioned out his lungs and gave him some meds and he is now doing a little better. They will probably keep him at the hospital for a few days to a week.

One pleasant surprise was that the neonatologist that worked with Aiden most in the NICU is his doctor in the pediatrics ward! We were so excited to see him because he understands Aiden's condition and medical history. One thing that has been frustrating when Aiden has had medical issues is that there is always a huge disconnect from the NICU to the clinic to the emergency room. Aiden's baseline health, when compared to a normal baby, appears critical. But for Aiden, it's normal. So when they see him, they don't understand that they have to evaluate him with a different yardstick than they do normal babies. Having Dr. Cheatham here is great because he understands Aiden's baseline better than anybody. It's kind of sad that we're on a first-name basis with many of the doctors, nurses, and respiratory therapists here, but on the other hand, it's nice that they know Aiden's condition and we are very comfortable with them.
Other than this latest illness, Aiden has actually been doing quite well. He's growing, albeit slowly, and he seems to be improving a bit.

In other news, I got laid off from my job a couple of weeks ago. The CEO of the company resigned two days earlier. One of the VPs and all of the managers tried their best to convince us all that our jobs were safe and the direction of the company would not change. It seems the new CEO wanted to flex his muscles a bit, though, and laid about 20 people off, including me. I had already been applying for other jobs because I sensed the company was in a death spiral. Unfortunately, they stuck it to me before I had another job and could stick it to them. I'm now on the job hunt. I've had one good interview, but so far no job offers. I have been traveling back and forth to Price working construction with my dad to pay the bills, but with winter finally here, it would really be nice to find something closer.

Skylar and Jasmine have been doing well. Jasmine has been sick with a pretty bad cold she picked up at church, but seems to be getting over it now. Skylar hasn't caught it yet, so we're crossing our fingers that he doesn't. Unfortunately, Aiden caught it, and because of his health problems, it is particularly nasty for him. Skylar really likes school this year. We have been very impressed with Snow Springs Elementary and Sky loves his teacher, Mrs. Penrod. His reading is really improving, which is a testament to Amaraa's persistence. I'm really proud of him. Jasmine loves singing her ABCs and doing everything her brother does. They both had a great Christmas and were spoiled by Santa Claus.