Halloween Fun

We had a great Halloween. Coleson decided a long time ago that he wanted to be a Lego person. The he decided Lego Indiana Jones. So I went on a quest to find a costume-but there was none to be found. Since I have so much free time(ha ha) and with his time off track we made our own Lego costume. I could never get the legs right so we made due with a box top and shoes, and accessories. Ammon was a gecko and Brynn a Ladybug. Brian and I dressed up as a "50's Grease" couple.





We had a trial run with costumes for Ammon's Bday party, then the day before Halloween Brynn learned how to trick or treat. At Brian's work they had a party and the kids went around to all the offices and cubicles to get treats. Brynn caught on very fast how to walk pick stuff out of a bucket and put it in hers. She's already showing signs of a true girl by carrying buckets around like purses on her arm. She threw a fit when we had to stop taking things from people. So Halloween night I thought I would walk up with her to every other house. She wanted nothing to do with "every other" part. Luckily, I have some very nice neighbors who helped me push Ammon and walk up with Brynn. She would mumble something with the rest of the kids and get her candy. She is also not afraid to eat right through the paper or plastic to get the sugar-remember my Disneyworld post about eating through the poncho- plastic does not stop this girl. We were so glad it didn't snow and I took all three kids out for an hour. Ammon enjoyed being outside and getting things in his bucket. Last year Coleson was so excited he ran so fast I couldn't keep up. This year it was perfect because he had rectangle box "Lego" shoes to slow him down. Brian had fun at home passing out candy and playing games with kids to earn "bonus" candy. We also carved a lot of pumkins. Lego Indiana Jones and a ladybug for our city's pumpkin walk, R2D2 for mutual, and at the top picture you can barely see "Bob" from Monster's vs Aliens with a few monster friends. I think Coleson has taken up my passion for carving pumpkins.


Here are the monster cheese fingers from the party.

Happy Birthday Ammon!

Last week Ammon turned 4! We had a fun family halloween party for him. I thought I had some fun healthy halloween food, but this year it bombed. Monster fingers-string cheese with green bellpepper nails-the kids said they looked too gross especially with that green thing-I didn't think I could go wrong with string cheese. Monster slime punch-grape jello with sprite, lemonade and gummy worm ice cubes-okay I'll admit when you drink it, it's slimy and as Brian calls it "a chunky drink", but I thought the kids would like it, but no way it was too slimy. Monster mouths, sliced apples with strawberry cream cheese and slivered almonds as the teeth-they did not get touched, I think they are actually a really yummy combination. The party was great though, and we're so glad so many family members could come celebrate with us!

Back to Ammon. I wish we could start over and turn three again. In a way we are back to where we were a year ago, actually worse. However, I don't want to focus on the negatives about this year and just focus on how far we have come. We really are grateful for Ammon's abilities and sometimes have to remind ourselves that when he was born the doctors told us he might be blind, he might be deaf, he might never move and to take him home and just love him (thank heavens for journals). Sometimes you just see and hear all the miracles from others lives and think of all the posibilities and if they overcame that, we might be able to also. The thing that is most frustrating is that Ammon has lost what little ability he had to speak and hold his body up.

The good: He is starting to gain a little weight, he can roll and roll, he can yell and laugh, he can smile, he can see and look at you, he knows who is familiar and still understands a lot of what we say. I was beginning to think that Brynn had passed him up on understanding and communicating, but there are still some things that I say to Ammon and know that he knows that I would not tell to Brynn. Ammon still knows his name, even though he hasn't said it for a long time. He loves to play with paper and balls and noisy shakers. He loves to turn pages on books when you read to him. He loves helium balloons. He tries so hard to walk. If I had nothing else to do, I would walk him around all day. Ammon could probably walk a 5K and enjoy every minute of it, he just needs me to hold him up. I can't remember if we mentioned that he had botox injections in his legs-that has really helped him to walk straight. We know he still has desires to do so much, so the possibility of him walking some day is still there. He just has to learn how to support and use his upper trunk muscles. He can hold his head up when he walks, so there are abilities there. He loves to go to school and ride the bus. He loves to take baths. Tonight he was splashing tons and kicking like crazy until he rolled over-that was scary. I told him you can't get carried away in the bathtub.

The down side: we are still trying to figure out his seizure medication. The EEG from last week showed that he has abnormal patterns all the time and he has been doing these myloconic jerks more frequently the last few weeks, so something is wrong. His reflux had gotten worse, so half the nutrition that we put in his feeding tube is coming back out. The doctors have suggestions of what to do, but don't know for sure. I usually don't cry when I go to his appointments and just try to be strong and get what needs to be done, accomplished. This week I broke down near the end of Ammon's most recent doctor visit (gratefully Ammon has a very understanding doctor). So it's been a frustrating few weeks where we just want solutions and answers, but those need to wait for another time. I don't know why things like this fall on his birthday where we just want to celebrate and have fun. I kind of felt like this summer we figured out what was wrong and got all the treatments we could and now we are ready to move on and build up his strength, but the summer is already well into fall and we are still trying to figure some things out.

With all that said we love our Ammon, he inspires great hope and faith, and he is a miracle boy that has blessed our family and friends eternally!! Most people can't help but feel better about life and the eternities just by being near Ammon.

One of Ammon's first homes:

One of the first times Brian held Ammon (we usually only got to hold him while he was being fed):

Coleson's first time seeing and holding Ammon when he came home in December (Ammon was a whopping four pounds!):

Ammon three days old with the "bili lights" on (he was around 2.5 pounds here; we didn't know much about him yet other than we loved him and wanted him to live and come home):

Ammon and his best brother Coleson in their "younger" years:

Ammon loves to walk. When I hold him he can walk forever...

Our Sweet Brynn

Wasn't conference wonderful! I just love feeling the spirit and being grateful for my family and just feeling love and joy for life. We have a Heavenly Father and Savior who love us. The gospel of Jesus Christ is true. So, This week Brynn was really cute to Ammon. I love these sweet moments. Instead of crawling over him, or sitting on him and smooshing him, she actually now crawls/walks around him and gets him toys. Sometimes she even tries to roll him over or move his head-like she sees me do. So one day this week I was feeding Ammon and then I went to go get something and I hear Brynn sliding a chair and thought, oh great what is she going to do, I was about to grab her, but then realized what she was doing. Usually she gets into trouble when she pushes a chair and climbs up on the table or wherever, but this time she was just trying to help feed him and then she signs thank you.


Wednesday was a "sick day" for everyone-the kids all had random fevers. So for the rest of the week I have stayed home with the kids inside-it got really cold this week in Utah. We've had a lot of fun together. I think because of our extra time together Brynn started to walk!!

Thanks to Ammon's Heroes

Ammon's cool team logo/tag this year

Cheney cousins!

Our family, getting ready to walk

Ryan, Jill, and Jayna


Thank you to all who were one of "Ammon's Heroes" at the Buddy Walk. We had a fantastic day. Brian and I managed to run the 5K (I came in 3rd for my age division pushing two kids in the jogger(thanks for letting me borrow your jogger , Karen)--I think there were maybe 5 or 6 ladies, I guess being 31 has its advantages). Next year I definitely need someone to run with, so I don't go mental- I needed you KyAnn. I was very proud of Brian for running the whole way. I think it's sheer love for Ammon that drives him to run without any training. The kids had so much fun with all the activities. We had some wonderful volunteers from our neighborhood-thanks Brianna(and BF), Whitney, Heather, and Mckenzie! It was a beautiful day with lots of smiles! Ammon and Brynn were a little worn out, but they made it through! Earlier in the week I met a family new to the down syndrome group. Their little girl is barely a year and has gone through the whole spectrum of hospital stays like Ammon, but in her first year. They are feeding tube buddies (what's in your tube)! Their girl is still on oxygen at night (the memories...), but she was so cute sitting in the restaurant high chair, with feeding backpack and stickers on her cheeks-for the oxygen tube placement at night. It was nice to talk to her, and to be thankful that we didn't have to do all those things at once. It's always humbling to talk to someone that might have it immediately more challenging than you. Anyway, thanks to our family memebers who helped us enjoy this day for Ammon and all his special friends!
Coleson gave high fives to every runner coming in!

Brian here. Alright, so Summer didn't do a complete job telling the whole story about her 5K experience, I'll take it from here. Once again you would think that both parents shared the load of pushing the jogger with two kids in it (I would think that). Well shortly after the start of the race Summer demonstrated her incredible athletic ability, even with minimal training over the past month, and quickly left me in the dust. Granted, when you're talking about my athletic abilities the term "running" a 5K is more accurately described as a borderline slow jog/very fast walk, but I was consistent and didn't slow the pace. Try as I might, I couldn't catch up with her and the kids and she ended up finishing about 3 minutes before me. I like to unselfishly think of it as letting her and the kids have all the spotlight to themselves. There were actually still people at the finish line when I finally arrived (no, I wasn't last), next time I'll have to cross while holding a 44-ounce soda and chomping on a couple breakfast biscuits ("just stopped at the DQ on my way in"). Anyhow, Summer was great and the kids had a great ride, with Brynn pointing out all the dogs along the route.

Special thanks to Kevin, Harmer Dog, Scotty the Duke, and so many others that ran the race or cheered us and Ammon through the finish line. The actual Buddy Walk rocked again this year! I think Coleson and his cousins got a great training run for Halloween next month, they hit the jackpot on all the carnival games! One time they came back to unload their goods before heading back for more, and each one of them handed us a 2-liter of Squirt soda they had won (imagine Coleson later on trying to get the lid off and chugging all by himself on his own 2-liter bottle...that's just great). They had a live band this year that played a couple of pretty good covers, and none of us could get enough of the unlimited snowcones. Thanks again to everyone that was able to come and play the games and support Ammon (Shah, you're on board for the 5K next year, right after we do the Wasatch Back, right?). Someday when Ammon can express himself a little better I'm sure his Thanks to everyone will convey so much more than we can!

Our Cheeky Monkey and more Buddy Walk info...

Ammon laughs or smiles everytime we say that to him. Yeah! It's been a week and Ammon's tube is working just fine! We are still able to feed him normal food, but when he won't eat or drink as much as he should, we don't have to try to force him to eat more, just plug him in and we are good to go. I didn't realize how much stress this would take away from me. For a long time I felt like everyday I was trying to preserve his life by trying to get him to drink or eat more. It might be inconvenient to go places and it is stressful to worry about the tube staying in, not getting infected and right now not letting him roll over, but those things are liveable, not eating or drinking is not liveable. So many things that we take for granted.

The doctor was trying to understand his situation a little more while we were at the hospital and was a little perplexed that he wasn't sick more (more? like we aren't sick enough?). Then he said "so basically you try to get him to eat all day long." Yes, I said that is exactly what I do. I never thought of Ammon as refusing to eat, but that is what he was doing. The doctor then said that Ammon's lack of eating and drinking was probably his way of protecting himself (there's another blessing in here, and we didn't even realize all these years). So many kids the doctor sees have serious damage to their esophagus and are constantly contracting pneumonia or other respiratory diseases. We thought it was bad getting submitted to the hospital once a year! But Ammon's esophagus and everything else looked just fine. He has a hard time chewing with his teeth and controlling liquids. We found out earlier this summer that he was asperating on thin liquids-basically choking everytime we gave him a drink. We have been thickening his food since he started eating as a baby, to make it easier for him to eat and to add calories, but we weren't doing that to his drinks. So after that test we have been thickening everything he drinks too. I thought he was protesting the texture, but maybe it is still too hard for him to do. We are always experimenting and praying to figure him out! The best thing of all is that he has been laughing a lot this last week. It's so nice to see him smile more. We think that even though the tube is initially painful at times, it might also be like having something tickle your tummy all the time. He has been super giggly at times and we love it! Maybe, it's just because he's finally getting all the nutrition he needs and isn't simply hungry all the time. Hopefully he will gain his strength back and gain weight! Thanks for all those prayers!

Ammon loves to be talked to, even at those times when he doesn't say much back. Here's some of the favorite phrases over the last week that bring big smiles and laughs. "Is Ammon a Cheeky Monkey in the Cheeky Room?" "Ammon looks handsome!" "Holy Moly" (thanks Ben for that one) "Ammon, you look nice!" "Pootie Tootie" (don't ask how this one came to be, it brings a smile and laugh and that's all that matters).

BUDDY WALK INFO:
Online registration ends tomorrow night. But don't worry, you can still register on Saturday at the actually Buddy Walk or Buddy 5K (no additional fee for same day registry). The 5K registration, T-shirt pickup, etc. starts at 8am then the race starts at 8:30am (Cheney meltdown should start about 8:40am). The Walk registration-picking up your shirts- and games and carnival stuff start at 10am, the Walk usually takes place closer to 11am and then lunch is at 12. The location is the Centerville Community Park (take the Centerville exit off I-15, go east and then turn left at Dairy Queen, go straight for about a mile and the park will be on your left, you may have to park at the church across the street). We are so excited for everyone that has signed up and hope to see many more of you there at the event. Thank you again to everyone for truly being one of Ammon's Heroes!!! For all the support everyone has always given Ammon we hope you truly do feel like a Hero!