As Good As It Gets

Earlier this month, due to much congestion, Jack returned to the doctors office. It turned out that Jack has Pneumonia and a partially collapsed lung. Since Jack's birth, we have read numerous cases where children with Down Syndrome have often died with complications of pneumonia. So to say the word "pneumonia" scared us was an understatement! Then, to top it off, the doctor noticed that Jack's liver felt enlarged and is worried about congestive heart failure. Of course, Kim left the doctor's office distraught with worry and in tears. After much discussion with the doctor, he decided that he would allow us to do outpatient therapy with Jack. Luckily for us, we avoided returning to the hospital...Kim was thrilled! Since our previous hospital stay, we still had oxygen at home, and, therefore, the doctor allowed us to treat Jack from home. Otherwise, he would have definitely returned to the hospital for another long-term visit. The doctor put us on a strict schedule of outpatient respiratory clinic visits, for suctioning, antibiotics, daily doctor visits either by phone or office (he even gave us his cell phone), and nebulizor treatments every 4 hours. We had treatments we had to do around the clock. During this time, the boys had Baseball practice and games, I had to get up for work at 5:45am, and Kimberly had Zumba she had to get up for and stay late doing almost everyday.

Oxygen containers, Oxygen condensors, tubes, medicine, nebulizors were all over the house. I was just exhausted. I looked over at my poor wife, I could tell she was so exhausted too. I said to Kimberly.... "I feel like Helen Hunt in As Good As It Gets." Kimberly smiled and laughed. She said she was thinking the same thing the night before and it was so funny I thought it too. If you haven't seen As Good As It Gets it is a movie from 1997 with Jack Nicholson, Helen Hunt, Greg Kinnear, and Cuba Gooding Jr. In the movie, Helen Hunts character, has a sick son, she is worn out from all the late nights helping him get better, and she is afraid of anything that might come into the house that could set off an episode that lands her young son in the hospital. I thought Helen Hunt did a great job acting, in that movie, but I thought it was a little over the top with how she was with her sick kid. Now, I think she was dead on!

It is a very interesting sight to walk into a store with a baby that is all hooked up to oxygen. It feels as if you are wheeling in an old grandma (sorry Grandma Hand :) . First, you have the air container on a little dolly that you are pulling behind you, but instead of the air being attached to your old grandma, the air tubing leads up to a little six month old baby. You get a lot of very curious, yet sad looks. Well, five days later, the doctor decided we should try to wean Jack off of the oxygen and so we did. He was doing much better and seemed to be getting better everyday. The doctor said it could take up to two to three weeks to get over the Pneumonia. Jack is constantly all smiles! His smile seems to tell his worried Mother and Father," don't worry about me, guys, I am just fine"... all with his adorable smile.


Then, this last week, Jack began waking up during the middle of the night with constant coughing fits and congestion! Kim would wake up, suction his nose, give him a nebulizor treatment, and refill the humidifier. After a couple days of severe congestion and constant coughing, Kim decided to take him to the doctor. When he arrived, they tested his oxygen and he was measuring at about 75%. The doctor listened to his chest...there was still much wheezing! Long story, short, the doctor is concerned that Jack has asthma, but also wants us to have him tested for Cystic Fibrosis. Now, we have to worry about Congestive Heart Failure and Cystic Fibrosis!! If it's not one thing, it's another! In the meantime, we are giving him an oral steroid to help with the inflammation of his lungs, an inhaler (twice a day), 2 different nebulizor treatments, reflux medication, and he is back on constant oxygen. Again, luckily, we had the oxygen at home to treat him. I guess the one positive thing that came out of this is that we get to park in handicapped parking whenever Jack is in the car. This keeps us from having to trek his oxygen tank all the way across the parking lot when we are at the store or going to church.

We are praying and hoping for good news at the end of the week! All in all, Jack is happy, cute, and so much fun to interact and play with. It's amazing how content a little guy can be who doesn't feel good most of the time. But, we feel he is going to pull through this and are keeping positive thoughts!

Taylor's Zumba Birthday Party

As you might know, Kimberly has been teaching Zumba for over two years now. Kimberly got some Zumba clothes this year, and Taylor just loves them. When I get home from work, Taylor will run down the stairs to give me a hug. She will have a Zumba tank top, and Zumba pants on with her sneakers. After she gives me a hug, off she runs back up stairs and closes the door behind her. Then I can hear dancing and loud music, as she Zumbas like her Mom in her room.

Well for Taylor's Birthday, I told Kimberly we should get her some Zumba clothes. So a couple weeks ago we ordered her an outfit online. With the purchase still a birthday secret, Taylor told Kimberly she wanted a Zumba birthday party. She wanted the Blacklights and Dance lights set up in the living room. She wanted to dance and party with cake and ice cream.

We thought that was a great idea, especially with our present for her. Robyn and Joe came over with their kids and we rocked to the Latin music while Robyn, Taylor, and Kimberly Zumba'd.... the rest of us did something we called Zumba, but was a little like a Saturday night live sketch. Taylor had a blast, and said it was the best Birthday party ever! It was a lot of fun.

Luke's A Dodger

We signed Luke and Blake up for Baseball this year. Ever since Luke saw the movie Sand Lot, he has said Baseball is his favorite sport. Last spring, we thought we were going to have a job offer in Salt Lake, and would not be around for the Baseball season in Cedar City. So we did not sign Luke up for the season. It would have been his first season without a tee, with live pitching. I ended up not starting a job until late September, and Luke ended up not getting to play.

Luke was put on the Dodgers this year. I told Luke that the Dodgers are my favorite baseball team. He frowned, then said I thought BYU was your favorite team Dad. I laughed, then said...the Dodgers are my favorite Professional team. BYU is my favorite college team though.

Luke's first game, he realized that the pitchers were not that good. He figured out that all he had to do was not swing, and they would walk him. He thought getting walked and being on base was the best thing ever. He got to steel every base, and loved it. Then came Saturday with the machine pitch. The Machine throws a strike every time. Luke still thought his strategy was sound against the machine. He just stood there strikeout after strikeout. After the first game I had to let him know that the machine was throwing strikes and he had to swing. We practiced a couple hits with the wiffle ball, and were off to the next game a couple hours later. This time he took his swings and got a couple hits. The excitement on his face as he hit the ball and ran to first base, was a lot of fun to watch.

Jack, Back in the Hospital!

Well the second week of March brought us back to Primary Childrens Hospital. If you ever have a small child with some health issues, and you don't go to a "Childrens Hospital", your crazy! If I knew what I know now... I would have driven Kimberly up to Primary Childrens Hospital for the baby birth. Primary Childrens Hospital in Salt Lake is incredible!

Well a cold, just the common cold sent us to the hospital with Jack. It just makes you want to say, ENOUGH ALREADY.... he's just a baby! We walked into the Hospital like we owned the place. We threw our bags on the floor, turned on the TV, and put our feet up. The place, sadly, was a home away from home to us.

Having Down Syndrome, Jack has an extra Chromosome in every cell of his body. These cells help make up every organ and tissue he has. Our bodies are just not made to run off an extra Chromosome. This extra Chromosome brings a higher risk of just about everything including, heart murmur, congestive heart faillar, and leukemia... just to name a few. These health worries were knew to Kimberly and I.
Kimberly was having a little panic attack being back in the hospital. The last time she walked into this place, she ended up spending two months inside. The kids on the other hand, could not wait to get to the Forever Young Play Zone at the hospital. This is a fun place, and the arts and crafts can't be beat. The kids helped get Jack settled, then ran off to play at the zone. Above is the jet packs they made, and wore proudly all through the hospital.

Two days later, we left the hospital. Jack was on Oxygen, but we were out. The worries of a long stay behind us, we took jack home. A week later he was playing above and in great shape. He is just the coolest little dude you have ever met!

Angry Birds Birthday Party

Kimberly's Cell phone broke down last July. We looked around at phones and options for a while. I did not want to get back into a two year contract again. Looking around was not such a hot Idea, Kimberly found this phone, and just fell in love with it. The Samsung Galaxy S smart phone. So a huge data plan bill later, we walked out of a Radio Shack with a new phone in September... Right before I left for Chicago. Well, if you can over look the cost, the phone has been awesome. It saved Kim's life in the hospital while she streamed netflicks from it. It makes the gadgets on Star Trek look like children toys. It probably has enough computer power to have ran the Apollo missions to the moon. Best of all, we downloaded Angry Birds! Well not only am I addicted to Angry Birds, but so is Luke, Blake, and even Taylor.

So this year for Luke's Birthday. He did not want a Power Ranger, Lego, or Star Wars party. He did not even want a Transformer birthday party..... He only wanted an Angry Birds Birthday Party! Kimberly got the cake tools out, and went to work. She had a very cool cake, and the party was off the hook. Luke loved every minute of it. That little red angry bird tasted great on top of the cake.
Angry Birds seems to be to Smart Phones, what Pac-Man was to the Arcade. I don't know if we will know what Angry Birds is Ten years from now. Luke though loved the Birthday Party, and I am sure this will be a fun story years from now one way or another!

First Bike Ride X2

We got the above red bike from a friend that was moving. They did not have enough room for it in their moving truck. So Devon brought the bike home with him. Luke and Taylor's bikes both still had train wheels at the time. We had taken Taylor's training wheels off a little over a year before, with disastrous results. Devon had given up taking the training wheels off, just to put them right back on an hour later. Luke saw the new bike and said he was going to ride it. So Devon took him outside, held the bike up while Luke got on top, then with a little help Luke was off riding on his first try. The picture above was taken shortly after.

Well Taylor decided that was not acceptable! Taylor came out and demanded a try on the new bike, and with a little help she was off on her own. Seeing Luke ride free, was just to hard to watch.



We don't think Taylor would have ever learned how to ride a bike.... If luke did not learn first. Their sibling rivalry lead her to get over her fear of crashing. In the end it was great, they have been riding every dry day since. Both their bikes have the training wheels off now. They play little bike games, and get some great exercise, away from the wii.


Posted by Devo