Thanks

I feel bad when I drop out of the blogging world for a few months.  Our computer burnt up after the last post.  I lost the camera for several weeks.  Then after everything was found and fixed, we have been in the hospital again with Ammon.  We were admitted the day before Thanksgiving for respiratory distress and a high fever.  He tested positive for Rhino virus, which is your common cold. Ammon went from bad to worse with breathing and fevers, but now we are back to better.  We might even go home Monday.  We have gone through every blood test and X-ray to find the source of the fever or infection, but nothing has turned up.  He is on a nasal canula during the day and bipap at night, which he went home with last year.  Last night he was given an IVIG, which is a blood transfusion of just antibodies, to boost his immune system.  So far he hasn't had any of the side effects and his fever is going down! (Thank you to all those poor college students who have donated plasma to earn extra money.IVIG comes from the plasma) We are hoping tomorrow is a stable breathing day with no fevers.

Thanks mom for coming out here to take care of our family.
Thank you to all those who care about Ammon and keep him in your prayers and serve our family.
Thank you to all those who supported us at the Buddy Walk!
Thank you to all the nurses and doctors at Primary Children's who continue to preserve Ammon's life.  It's nice to see familiar faces.
Thank you Coleson and Brynn, who roll with the flow when their mom is gone.
Thank you to my wonderful supportive husband who has learned to change diaper blowouts, put mousse and barrets in curly hair, and make pumpkin pie.

The last two months have been great. The weather was nice. Ammon returned to school part time.  We celebrated his birthday with the neighborhood, which was also a celebration of one year done with chemo, two more to go.  Coleson had a great 10th birthday and continues to amaze us with his reading scores.  Brynn started dance class, which she loves.  She continues to say the funniest things like "can we listen to 'all I want for Christmas is my toothbrush cheese?'"  We tried to explain what the real words are, but apparently we are wrong and she has brushed her teeth with cheese.

Hope everyone is having a fantastic holiday season and remembering those things that are most important!

Buddy Walk and 5K...

It's finally here!  The Buddy Walk and 5K are tomorrow morning, September 15!  Can't wait to see so many of you there.  We'll post pictures and an update afterwards.  Remember to wear something camo or military oriented as part of Ammon's Army, we'll have military tags for everyone.  Thanks!

August Activities

I am sad our summer fun is over.  We have been busy trying to get out of the house, but not over doing it to keep Ammon well.  Ammon continues to be doing good as far as a Chemo/cancer standpoint, but his stomach has issues, which keeps him crying and in pain half the week.  So he is still having challenges, but on good days we have enjoyed life. 
Here are some fun things we did.


Coleson officially learned how to play Lacrosse at a camp.  He had so much fun.

I wanted to give the kids a pioneer experience before Pioneer Day, so we toured Brigham Young's House.  The missionary sisters there had never encountered someone trying to come in a wheel chair, so I had to pull Ammon up the stairs to go in.  Then we could only see the bottom half because there is no way I could take him up the stairs inside.  All the ornate wood carving and furniture still amazes me.  It always fills me with gratitude for the sacrifices the pioneers made.

 Afterward we hit the neighborhood market for ice cream.  Coleson and Brynn had never had bubblegum flavor before.  They were in heaven.  Remember trying to save the gum in a napkin for later (Brian says the side of his cheek), when you were a kid, but by the time you went to eat it, the gum was all stuck to the napkin and just wasn't edible.  Yeah, it was fun to relive that.

 We made it to the Bountiful Parade, thanks to the help of my inlaws.  I carried Ammon several blocks in order to be able to squeeze through the crowd.  It was worth the effort to see the 2,000 stripling warriors!

 We went to the Treehouse museum for Brynn.  I think this was the only moment where Ammon wasn't crying.

 Our garden has survived this summer and I found a great use for my unsightly chain link fence.  It's hard to tell but there are several green bean plants growing up all over the fence.  I think Brynn picked out the longest one.

One week I was feeling very adventurous with one of my friends and we decided to go to Thanksgiving Point's dinosaur museum on $2 Tuesday because I had never been there before.  Ahhh! That was the worst idea ever.  Trying to go through thousands of people with a wheelchair is not my favorite thing to do.  I actually avoid going anywhere with a crowd.  Ammon was crying within 15 min(probably from all the noise) and so I thought I will just keep walking and make my way through the museum while Coleson and Brynn soak up everything they have ever wanted to know about prehistoric creatures as fast as they can.  At one point I could not see Coleson and figured he was lost.  I am glad he is not afraid to talk to adults and figure out how to get help.  I was trying to get through the mass and find my way out, when I get a call on my cell phone saying they have my son.  After that, I was ready to go, but the kids begged me to at least go to the end where you can dig for bones.  I was trying to figure out where I could sit and pull Ammon out to hold him when I saw this wheelchair sign.  I thought oh this is where you park wheelchairs.  So I put his wheelchair there and then the light clicked on.  There was a counter with sand on it and you push your wheelchair up to it so then Ammon could sit and put his hands in the sand.  It made my whole day.  All the crying kids and yelling in the background faded and I helped Ammon brush off the sand to find a bone.  As I left I told the old lady at the exit that it had made my day.  She just smiled.  I don't think she could hear me above the noise, but it made the hour of chaos worth it. 

2012 Buddy Walk and 5K!!!

Save the date of September 15, 2012 (Saturday) to participate in the Buddy Walk with Ammon!  In light of all the warriors and angels that have prayed for and served with Ammon this past year, coming up with a worthy team was rather easy.  In every regard, you have loved and supported Ammon through some of the most daunting battles that a 6-year old is called to go through.  Please join us in celebrating the numerous hard fought victories that Ammon and each of us have experienced.  Be part of Ammon's Army at the 2012 Buddy Walk and 5K!

We'll post more later, but to register for the Buddy Walk or the 5K, or both, please click here.  

Two Cheetos

Hooray for summer vacation...Life has been good.  I don't know who was more excited, Coleson or me.  We were able to make it on vacation!  I have been waiting 8 months to go somewhere and Ammon was finally well enough to travel.  We went to visit my parents in northern California and we did it without visiting the hospital.  We still had several days where Ammon wanted to be held all day and cried a lot, but it was so much easier having three other adults to help!  The second week he was feeling better, so we were able to get out.  We pretty much did the same things as last time.. incredible John's pizza, Folsom zoo, gold panning, kayaking, but this time Brian was there to do it all with us.  We also saw friends and extended family whom I miss.  The newest thing was a splash pad that we hit a few days.

We hit cherry season just right, so we enjoyed my parents prized cherries.  Coleson can tell you all about protecting the tree from predators with a BB-gun.

Water wars with Paki (grandpa).

Brian and I were able to sneak out for a night and celebrate our 11th wedding anniversary!  (Thanks to my parents) My mom didn't get any sleep, so I don't know if we will ever get out again.  I love my wonderful, supportive husband, who never complains. makes me smile, and works hard.  He let me sleep in almost everyday of our vacation.  I badly needed the sleep.  I usually get up several times throughout the night with Ammon and by 5:30 I wonder if I even slept.  Then everyone gets up around 7 and I want to cry.  Coleson started making his own breakfast and getting himself completely ready the last few weeks of school because I just couldn't make myself get up.  I would barely get out of bed, throw his lunch together and drive him there by 8:45.  So, on vacation Brian would get up around 6, hold Ammon on the couch, and I would get up around 9 or 10.  It was so nice.

The kids were surprisingly good on the drive home and didn't look at each other wrong or tattle because someone was touching me, well maybe a few times.  We actually stopped at a run down play ground in Wendover as a break/ reward.  There was an awesome ride there.  This double swing which spun around and lifted the kids higher, the faster they went, like a fair ride swing.  I might have gone on it too.  Definitely worth the stop if you are traveling through!

Brynn turned 4! This is when I want to freeze time.  She is imaginative, helpful, happy, and so loving.  She wanted to have a Rapunzel themed party with friends and cousins.  She loves to brush her hair, clean, read, paint and sing and dance, so I think it's a good fit.   We did hair and made jewelry.  Brian jokingly suggested we have the girls clean, but we skipped that activity.  She loved it and was thankful for all the "pretty" presents.

 

She had her friend Davin come, we figured he could be Flynn Ryder, but he didn't want anything to do with the girls for most of the party. 

This is how she ate her cupcake at the end of the party, she was worn out.  Did I mention she just started swim lessons the day before?

 
We had an awesome 4th.  We celebrated with neighbors for breakfast, Brian's family for lunch, and my brother's for dinner/fireworks.  All were so fun.  Coleson couldn't wait for the fireworks because we can do aerials in Utah now.  I think he asked when we could do them about every hour.  Brynn got to celebrate her birthday again, but had a little too much attention, froze and cried.  She was grateful for everything, though.

If we hadn't done enough for the last few weeks, we also went camping this weekend.  I was nervous again about taking Ammon.  After reviewing all his needs in my mind and figured we would have enough portable oxygen for 24hrs, we took a chance.  I figure that I hold him most the time anyway, why does it matter where I am.  I did worry about the smoke and tried to keep him out of that.  We had a great time and we did get to light a fire despite all the fires and restrictions.

Brynn couldn't get enough "smashmellows".

Coleson got to go exploring with his cousins and brought back a ton of dead branches to work on his pocket knife skills.  Coleson and Brian went on an "awesome but grueling" hike.

We were able to squeeze our activities around Ammon's chemo.  He had his backpoke two weeks ago and recovered pretty well.  He still has bad days with the steroids and all the medications he is on.  I think they all upset his stomach pretty bad.  Last week he finally seemed to be doing good and I noticed he was sucking, not just licking, his finger.  We were next to some puffy Cheetos, which used to be his favorite thing to eat.  So I thought maybe he would like one.  I put it in his mouth, not knowing if he would gag or like it.  He started sucking it like crazy.  He ate the whole thing and so I gave him another one.  I couldn't believe he didn't choke or gag.  It made my day.  There is still hope that he will regain his abilities!  I have been giving him one everyday.  Then tonight I was holding him and he was moving his hand around and really making eye contact.  I held out my hand and said "Ammon. high five"  He looked at my hand and started to move his whole body until he could focus on the right muscles to move his arm and give me a high five.  It was real!  I could see it in his eyes.  I did it again and again and had Brian record it.  Little things like this make me so happy and fill me with gratitude for what he can do.