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!

It's Time for Ammon to Bulk Up!

This Tuesday Ammon goes back into the hospital for another important surgery. This Tuesday Ammon will be receiving a G-tube or feeding tube to better help him get the vitamins, nourishment, and liquids that he needs on a daily basis. With his medical conditions it has made it difficult for him to put down alot of food, and especially drink liquids, even thicker liquids. We went to a class on Friday at Primary's to learn how to use the tube, clean it, replace it, etc. Let me tell you, we've done the oxygen, the monitors, and half a dozen other things, but there is something about this tube that is a little more unnerving than all the rest. I mean we are pretty good at all this medical stuff at this point, especially when Ammon came home from the NICU as a baby at about 4 pounds with oxygen, monitors, the works. We are always telling the doctors, "Just let us take him home, we got all this medical stuff covered." But this feels a little different. It is the completely right answer at this point, but it will take some weeks to get comfortable with. We are especially not looking forward to the recovery period for Ammon, it is a very painful process for a couple weeks. It's especially hard because Ammon has been laughing so much over the past week and we are seeing alot more of the real Ammon again. Tonight we had him laughing so hard for over an hour that we had to take breaks so he would have a moment to catch his breathe. Anyhow, it goes without asking at this point, but please keep Ammon in your prayers for the next little while, he's about to have a rough go of it again.

We've had a lot of questions about the Buddy Walk and Buddy 5K. Again, we'd love to have you all there, even those that only know Ammon through this blog (please don't be shy, just come). We'd love to meet you and show great support to Ammon. Please see the post below to sign up online and be one of Ammon's Heroes! Thank you again to everyone, and we can't wait to see you all in two weeks at the Buddy Walk!

Get ready for the Buddy Walk

It's time for the annual Buddy Walk. This year the registration or donations are all online. Here's a brief summary of what the Buddy Walk is for. The goal is to promote understanding, acceptance and inclusion of people with Down Syndrome. The money raised goes to the Utah Down Syndrome Foundation. The money is used for special events for the families, to bring them together, for education and research. The event consists of a one mile walk on a sidewalk around a park (these are done nationwide about 275) It gives the community and our family/friends a chance to interact with these wonderful children and celebrate who they are. After the walk there is a carnival for the whole family--Games, bouncy houses, music, face painting,a raffle, and lunch. It really is fun. The event is Saturday Sept.19th at 10:00 (they usually don't start the actual walk until 11:00) at the Centerville Community Park (1350 North 400 West in Centerville, about 15 minutes north of Salt Lake). We would love to have anyone come and be on Ammon's team. This year we are team Ammon's Heroes (I realize I spelled heroes wrong- that's what happens when I do things past 11pm.) We really appreciate all those who have come in the past to support us. There is also a 5K at 8:30am which we will be running in also.

We have our own Ammon page to sign up under. Go to http://www.firstgiving.com/AmmonsHeros

Thanks again for all your prayers and thoughts. Ammon is doing better. He is starting to smile and laugh more-which he wasn't doing for a while. He is still pretty weak though. This week will be a good test with the medication to see if we can get him back to normal.

"I Still Want to Go..."

Maga, this is a "Brian post" so it's going to be long. I thought I should warn you.

Summer and I have talked frequently about this type of stuff over the past year, and I’ve come to the conclusion that more often than not I don’t do a good job communicating these things, especially to friends, family, and other concerned loved ones. I guess I realize that every family has challenges and trials of the physical and emotional sort, and usually they do a great job of just dealing with them and moving on and no one is the wiser. Sometimes when we talk about Ammon we almost always get the response of “Oh, we didn’t know; we had no idea,” and my favorite “Wow…” But more often than not we are still hesitant to share about the challenges and daily struggles, we always want to be very clear that on the scale of life Ammon has been and will continue to be one of the greatest miracles and blessings to our family.

On Thursday this past week Ammon had another appointment with a neurologist. The main intent of the appointment was to determine if there was anything discovered during Ammon’s recent MRI that would explain the regression in his abilities and interactions over the past year. The neurologist essentially said that it was obvious that Ammon’s brain was badly damaged at the time he was born, and that area of his brain has healed and kind of scabbed over, for lack of a better description. There was nothing new there that would be causing his developmental regression. The doctor recommended that an EEG be performed, which in technical terms means you hook up over a dozen little probe thingys to Ammon’s head and they work their magic. After hooking up all the probes, Summer held Ammon in her arms and gently rocked him to sleep, and this is where the revelation came. I need to tell you that when Ammon sleeps he still looks like the most precious innocent angel that he was when he was only a couple weeks old in the NICU. Everything about him is completely at rest, and it’s usually at these times when I have the opportunity to just sit and watch him that I have so much hope for him, and I feel so inspired. I had no idea that while his body and spirit appear to be completely at rest, his beautiful mind is being stretched to its limits.

When Ammon fell asleep in Summer’s arms at the hospital the probes and computers started registering intense seizure activity. Even though his body was completely relaxed, his brain was experiencing consistent seizures the whole time that he slept. Apparently every night when Ammon goes to bed and the rest of us are dreaming and rejuvenating for the next day, his mind is consistently at work in all the wrong ways, in all the damaging ways. When Summer called me at work to tell me about this I was completely caught off guard and my emotions got the better of me. The seizure activity makes it hard to retain and understand short term memories, let alone long term traits and characteristics. How hard it must be for Ammon, to “forget” what it’s like to say Amen before everyone else at the end of a prayer, to “forget” all the silly songs and words that make him smile and laugh out loud, to “forget” how to give shout-outs to Daddy when he comes home and to give him high fives. Finally, we think we have one more piece to the puzzle, we just didn’t know going into this that this piece would be so important and the puzzle would turn out to be so complex. At least we have learned enough at this point to not assume that the puzzle is complete.

Ammon was scheduled to spend the next day and night at the hospital to have a sleep study performed, wherein he would be given seizure medication and then monitored to see if it would work. The neurologist indicated that it is possible to reduce or eliminate the seizure activity, but the process is not without trial and error (we’ll take the trial). Once the seizure activity is overcome, we should be able to start seeing more of our wonderful Ammon again. I think about it though, and our “new” Ammon might not ever be the same as our old Ammon, especially if he’s forgotten. But I know he has the same spirit within him, and the same deep trusting eyes, so we are eager and hopeful to help him rediscover who he really is inside.

I usually work only half days on Fridays, so I came home right before Summer took Ammon to the hospital for his stay. Later that night I brought Coleson and Brynn down to see Mommy and Ammon. Ammon was hooked up and bandaged up. He had gauze bandages all over his head and under his chin with several dozen wires sticking out the top of his bandaged head and running into the monitor. At first glance he reminded me of someone dressed up as a mummy or as Marley from Dicken’s Christmas Carol. Coleson was immediately concerned and inquisitive. Whenever the nurse came Coleson showed his love for his little brother, and would directly ask the nurse, “What are you doing” or “What’s going to happen to him.” After the explanation, he would always follow up with, “Ok, I just don’t want him to cry; don’t you make him cry.” This line of questioning and concern continued throughout the night the whole time Coleson was there. And when Ammon came home on Sunday Coleson was jumping around and ready to throw a party that his little brother was home safely.

The first night appeared to go alright, but the medication was only about 20% effective in reducing and eliminating the seizures, so Ammon stayed Saturday night also. I stayed with Ammon on Saturday night and Sunday morning and we had a good time together for being in the hospital and hooked up to a bungee cord of wires. Summer had told me that the nurses watch him all night, but I didn’t realize how closely. Our nurse pulled a desk in front of our half closed door and sat there all night physically watching Ammon in addition to all his electronic monitors. Her only job was to watch him, and if she left for a brief bathroom break someone else would take her place. It took me a while to fall asleep knowing there was a light on and someone watching from the door, but eventually I gave in to the exhaustion with Ammon and we slept okay throughout the night. The new medication given on Saturday night appeared to do the trick and the doctors let us go home on Sunday morning. We are all hoping and praying that this new treatment will start having the appropriate effect over the months to come (there are many followup visits over the next few months in addition to Ammon’s other appointments).

I just wanted to share one more thought. Sometimes I might be accused of thinking up scenarios in my mind of how or why things happen, only to make me feel better about whatever experience I’m thinking about. In all honesty though, when it comes to Ammon there is often a deep understanding and realness that comes when I think about him and his important place in our family and in the eternities past and to come. I’ve often felt real spiritual assurances that I cannot refute or deny wherein I’ve come to realize that the words and images and pictures I sense and see are not always exactly right or exactly how it happened, but the message is right, the meaning is true (I hope that makes sense, I don’t know how else to describe it). In that light, I don’t know how specific the glimpses are into our mortal lives before we come here, but in the case of Ammon I’ve come to know that he was aware of some of the more unique challenges he would experience. That’s part of the reason why I love this little guy so much and am so amazed by his strong spirit and determination. I can clearly hear him say before his life here, in a comforting and reassuring way to those with him, “I still want to go…it’ll be just fine...my family will always love me...I still want to go...” Ammon has been a treasured gift to our family in many of the same ways the Savior has. And with both of these Gifts, I think our little family will always be just fine.

We'll try to do a better job keeping you posted on Ammon.