A Shout-out from Ammon...

For the past several months we’ve been missing certain wonderful little things about Ammon. We noticed little by little, that his personal interactions with us and others have been changing or completely disappearing. He hasn’t been giving us delightful shout-outs when we come home, he hasn’t been responding to specific songs that he previously loved, and certain playtime catch phrases that we use with him have exhibited limited or no response. For example, at the end of every vocal prayer right before we would say Amen, Ammon would immediately perk up and shout out a quick Amen (he would almost always beat us to the punch). Songs like “When Your Happy and You Know It” and so many others have lost their instant sweet smiles and excited hand gestures, only to be replaced with distracted stares. I used to always sing to him the notes to the “Charge” song they do at baseball games, and he would always give me a huge smile and shout-out at the charge part, but even that disappeared. Even the sound of my voice, Summer’s voice, or Maga’s voice over the phone has not had the same excited response. We realize that kids usually grow out of doing certain things, but to have everything disappear so quickly and all at once didn’t seem natural. We haven’t known what is potentially wrong, but things have changed. We’ve dearly missed our sweet Ammon’s personality, and we’ve been fearful that we would continue to lose more of it.

Over the past few months we’ve been praying with extra emphasis and faith on this, and hopefully we have the answer, or at least part of the answer. On Tuesday, Ammon went in for surgery on his ears to insert tubes and perform an ABR hearing test. The surgery required that he be sedated, and he ended up fasting till almost dinner because the surgery was delayed several hours. The surgery went well, and the doctor told us that he found a lot of thick fluid in Ammon’s ears. The doctor suctioned as much of the fluid that he could, and we are putting drops in Ammon’s ears for the next week to ensure the rest of the fluid is removed. The ABR test indicated that with the fluid removed his hearing was still in the normal range and no permanent damage had been sustained.

While we were sitting in recovery we thought we would put Ammon’s new tubes and cleaned out ears to the test. I quietly sang the notes to the “Charge” song, and at the charge part, even in his still groggy and tired state, Ammon gave a little shout-out. We hope our little Ammon is back, we have missed him so much. If you feel so inclined, please remember our little boy in your prayers. Through Ammon a lot of special blessings have happened to our family and others over the past three years, and I know those blessings will continue well into the future. Hopefully it doesn’t sound too selfish to say, but a simple little shout-out from Ammon every now and then makes me feel like the luckiest person in the world.

Brynn and Ammon...

Brynn continues to do well and we are figuring out her schedule more and more day by day. She sleeps a lot, and her relatively brief fussy time is from about 10 to 12 at night. This is great Daddy daughter time, because I don’t mind staying up late and Brynn isn’t upset if someone is holding her.

Couple of other things that we didn’t initially expect or think of with this wonderful addition to our family. With Summer having a C-section delivery she is limited in what she can lift, and our not-so-little Ammon is off the lifting list for six weeks (two weeks already done). Summer is recovering so much better this time, and knowing the type of person she is, if it weren’t for doctors orders I’m sure she’d be carrying Ammon and Brynn around already. So to prepare for this lack of carrying I turned Ammon’s crib into a day bed, so it is only about a foot off the floor with a partial guard rail. Ammon slept in it for the first time Sunday night and about 3 a.m. woke up crying because the lower half of his body had fallen out of the bed (yeah, they call me the master craftsman for a reason). After strategically stuffing a few pillows in the opening and calming him down he slept fine the rest of the night.

Here’s our expected routine for the next little while. I’m in town this week so I get Ammon up and fed before I go to work, with the expectation that I’ll make it home in time to feed him at night, do his exercises, and get him to bed. Turns out we have some phenomenal neighbors (I think I’ve mentioned that several times before, we live with some awesome people). The neighborhood has organized to have someone come over during lunch and nap time to lift, play, and do exercises with Ammon until Summer gets the okay to do this on her own. I can only hope that those people that are sacrificing so much to come over are blessed immensely by the spirit of this not-so-little guy. Necana came over Monday and helped feed Ammon and put him down to a nap, she did a great job. This is all new for Ammon too, so I’m hoping his spirit and personality will allow people to serve him in this regard, and help him to open up a little more in public and strive to be more physically independent with his mobility. After nap it was big brother Coleson’s job to lift Ammon out of his bed, put him on the exercise mat, and pull him into the living room. Big brother used his muscles and did not disappoint. I’ll keep you posted on how this whole process goes.

Ammon’s personal nursery teacher was released from her calling last week. Robin has done a great job with Ammon, and we are going to miss her so much. She gladly endured multiple crumb and drool messes on the shoulder, with occasional spit ups on her nice Sunday dresses. She was Ammon’s first teacher, and we will always remember her as such. We are grateful for her willingness to color, sing, and play with Ammon, but most especially we are grateful for her teaching him, loving him, and accepting him.

One more item. This past Friday we went down to Grandma and Grandpa Hutchings home and they took us all to the Sizzler for dinner (the Sizzler rocks, especially before 5 o’clock). After a wonderful meal, Grandma and Grandpa took the lead and were leaving shortly before us to head home. We were all waving and saying good-bye and I looked down at Ammon and he was waving his whole arm. I quickly got Summer’s attention and we just watched in amazement as Ammon continued to wave bye all on his own. Then on Monday morning as I left to work he waved bye to me again. It probably sounds silly to get so excited and emotional over something so common, but we are sure proud of him. I attribute it all to two solid weeks of fun interactive times with Maga, she has been such a blessing in Ammon’s life yet again. We miss you Maga!

We're So Glad When Daddy Comes Home...

We've been promising friends and family posts of Ammon being himself at home. Most people think that Ammon doesn't say much, because he really doesn't when he is in public. But when Ammon is at home and it's just the family he can be quite the chatterbox. It's been slightly hard to capture because whenever the camera comes out he usually keeps quiet. One sure fire way to capture "vocal" Ammon is when Daddy comes home. Believe it or not, this is one of the more low key Ammon reactions when Daddy comes home from work (you can't stage this kind of stuff). Hopefully we'll get more out here in the near future as we catch Ammon's version of dancing to the music, giving five, playing the "pat" game, and so many others. There's alot inside this wonderful little boy that is still trying to express itself and find a way out.

Opportunities...

I'll prep you all up front, this post is about mushy touchy feel good stuff concerning people with perceived and real disabilities. That's my disclaimer, not that one is really needed. I came across a story last week that I thought was amazing and added to my already strong hope and faith in good people. It's a story about a teenager with Down syndrome who was simply given various opportunities throughout his life, and the results of being given those opportunities to himself and others (the young man's mother works at my firm in our Philadelphia office, that's how I came across the story). I've attached a link to the Sports Illustrated story, and that's just one of a dozen media stories that have been done on him. The young man's name is Brad Hennefer, and if you have a few minutes I would encourage you to click on this story link and read his story before continuing on (my thoughts for the rest of this post don't make alot of sense outside the context of the story in the link). Here's one other story link from another local media source.

Good stuff, isn't it. Similar to what Coach Valore said in the one story, our family has been very enriched simply having our little Ammon around.

Mixed in with all of the perceived negatives and trials that come with a disabled child, there's alot of good, alot of hope, and alot of blessings. I realize that Ammon might not be a high school basketball star, but I hope to work as hard as I can to give him those opportunities and I am very appreciative of those that do the same. He has successfully grabbed onto so many opportunities already. I think back on some of our initial hopes for him. When he was born there was the possibility that he could not see, but we would hold him and talk to him in the NICU and he would turn his head and look at us. Turns out with some glasses his eyes are fine. You'll remember he completely failed all of his hearing tests, but at home we would call his name out from around the corner or sing a silly song out of eye sight and he would smile. Turns out that his hearing suddenly became fine. You'll remember that he had several holes in his heart when he was born and his pulmonary artery had a thick wall (possible surgery was in the works), but a while before his 1st year birthday the doctor said the holes had disappeared and his heart was fine. His physical abilities continue to improve and I know that he will walk someday. There's a dozen other things I could mention about Ammon, but I imagine that someday he might say to me something like, "Dad, why do you gotta tell people about all that personal stuff" (he will be right, but isn't that a parent's luxury, sort of like showing his baby bath pictures to his first girlfriend). Opportunities sometimes, for some people, take alot of work, maybe even years of work. We'll work as hard as we can to prepare Ammon physically and mentally for those opportunities (I'm positive he's already good to go spiritually); the opportunity to walk, the opportunity to talk and communicate, the opportunity to learn and grow, the opportunity to play catch, to dance, to run, to go on a date, to come with us on a mission. Then we can also hope in good people to help these opportunities be grabbed. I think back again on the quote from Coach Valore:

"It's been a very enriching experience for me, and for everyone who comes in contact with Brad," Valore said. "I think it comes from an understanding as to how hard Brad's worked through this. It's made me a more understanding person, because it's the first opportunity I've had in this situation. Working with Brad, it's enlightened this team and me immensely how a young man can work and overcome adversity. Brad makes everyone around all better people, whether it's during practice or during a game. It is true love."

Coach Valore has it all right. It's not just Ammon that needs to seize opportunities, but because of people like Ammon we all have very special opportunities too.

Ammon and the Hospital...

Ammon is Home! Since the posting below of our excitement and anticipation of a new little girl in our family, our current youngest one took a turn for the worst. Valentines Day was so much fun! We had a candlelight dinner with the boys at home, we had found out about our little girl, and Coleson appeared to be getting completely over his cold. However, Ammon had started to cough on Thursday, so on Friday we took him to the doctors as a precautionary measure. By Friday afternoon Ammon was checked into the hospital and ended up staying there for five days. This is becoming an annual tradition for this kid (we hope to break this tradition next year by simply sending the entire family to California for the three months in the winter; I’m sure this is great news for Maga and Paki). Turns out Ammon got hit with a double diagnosis of RSV and pneumonia. How this happened we really have no idea, we have always tried to be so careful with him. We assume he either got it during one of his therapy sessions or just bad luck.

Summer was a trooper and spent three of the four nights at the hospital, while I barely managed the Saturday night shift (unfortunately, busy season is still chugging along full bore at work). Going on less than an hour of sleep per night I still don’t know how she did it, I am so impressed with her. Family and friends were awesome to say the least, and several nights we were well fed and Coleson was well cared for during the day. Sara was an especially good friend to Summer and Ammon, by coming up to the hospital and simply holding Ammon for several hours during the day so Summer could take a much needed break.

Ammon was a powerful reminder of what it means to be of good cheer and persevering. Despite the fever, pains, and other ailments he still was laughing and smiling early on the process. By Sunday his demeanor had become more subdued primarily from exhaustion and dehydration, and Sunday morning they added an IV to his treatments. I’m so grateful for all the answered prayers and blessings on his behalf. Coleson would regularly come running into the living room from his bedroom and ask if Ammon was better yet, because he had just finished saying another pray for him in his room. I’m still sometimes surprised by the great love that a five year old has for his younger brother, and the lengths and sacrifices he’s so willing to do to show that love. Gratefully Ammon is on the mends and we were able to bring him home late Tuesday night. We were able to talk the doctors into letting us bring him home once the fever broke for good. We are old pros when it comes to oxygen tubes, oxygen saturation and heart rate monitors, breathing treatments, etc, etc; bring it on is what we say to those things now. We got Ammon to bed a little before 11 on Tuesday night and he slept through the night (we knew we had made the right decision). They didn’t bring us a normal oxygen tank for Ammon, instead it’s a large machine the size of a TV that somehow takes pure oxygen out of the air and sends it down the tube. It’s not overly loud, but at night I keep thinking that someone is running their lawn mower, than I realize that it’s still winter and still the middle of the night (I guess these various sounds at night are starting to get to me). To me the machine sounds like Darth Vader suffering through an asthma attack.

Again, we are simply excited and grateful that Ammon is home, he is still our little miracle boy.

Babysitting and Gas Cards...

Busy season has hit our family full on for the past week and a half, and it will continue for the next two months. There is usually a partial sense of exhilaration and accomplishment associated with the start of busy season, and those feelings are there this time as well. However, certain circumstances at work are making this season especially trying. In light of that I wanted to write a few things about my family and other things that always seem to lift me up. I’m not the type of person that gets sad or frustrated when my family is doing fun activities while I’m working my way through seemingly endless issues late into the night (I realize that it is not always fun and games at home either; Summer always works much harder than I ever do at my job). I actually feel a lot better knowing that Summer and the boys are having fun together, experiencing joy, and are just plain happy. So here are a few stories that brought a smile to me recently and revived memories of so many good times from before.

The weekend before busy season started Summer and I wanted to make it to the Temple to recharge the best way we know how. That Saturday morning Summer went for a run at the community center and Coleson eagerly went with her. Coleson might have run about a mile before heading down to the basketball courts to watch some kids from our neighborhood play on one of the community teams. He sat next to KyAnn, who is a wonderful woman that lives down the street from us. When Summer came down after her run, KyAnn asked her when we would be dropping the boys off. Perplexed, Summer asked her what she meant. KyAnn replied, “Coleson told me you and Brian were going to the Temple and he asked if he and Ammon could come over to our home and have us watch and play with them. He’s got it all set up; so again, what time are you dropping the boys off.” Yup, Coleson set it all up, not much gets past this kid. That night we dropped the boys off at KyAnn’s house and they had a great time playing with everyone. KyAnn has a little girl that is about 3 ½ years old, Shayla. Shayla loves to play with Coleson, and when she was in nursery at church she would always talk to Ammon. She recently received a new baby girl doll. Apparently, she likes Ammon so much that she named her baby doll Ammon. KyAnn tried to explain that her doll was a girl and Ammon is a boy name, but that didn’t matter to her; the little doll that she loves to play with would be named Ammon, case closed. When we picked the boys up that night they were both so happy and had had a wonderful time. We were there for over 20 minutes just watching Coleson and Shayla run around the house, with no awareness that it was well past bedtime. As we left that night I was reminded of the goodness of the people that we are able to associate with on a daily basis, and this night also reminded me of the specific goodness this family has shown us in the past. Here’s the specific experience this whole night reminded me of.

About a week and a half after Ammon was born over two years ago, Summer and I were at home when a knock came at the door (we received a lot of welcome knocks on the door after Ammon was born). KyAnn also has three teenage daughters named Jill, Carrie, and Paige; and they were standing there on our doorstep. One of them handed me a thick envelope and simply said something to the effect of, “hope all is well, we’ll see you later.” Before I could really say anything more than thanks they were off the porch and heading home. I assumed the envelope contained birth congratulations or a get well soon card for Summer (it would still be quite some time before Summer would be able to do anything physical or quickly). I gave the envelope to Summer and we opened it together on the couch. There were no cards, but instead several pieces of paper, a couple of receipts, and two cards that looked like they were from Flying J (a gas station chain). We were confused to say the least. We quickly read the first page and it essentially said the following: “We heard about Ammon and understand that he will probably be in the hospital for some time, so we wanted to do something to make it easier. After thinking about it for a while, we thought it might be helpful if we could get you some gas cards to pay for the fuel in your cars as you drive back and forth to the hospital. We put together a short letter and passed it around the neighborhood explaining what we wanted to do and if together we might be able to purchase some gas cards. We gave a short deadline and people have been dropping off money at our house non-stop for the past few days. We were actually quite surprised about the incredible response and how much was donated, it far exceeded our expectations. You’ll find in the envelope two gas cards, one for each car. Each gas card contains well over $200 (around $500 all together). Thank you for letting us serve you and be part of this miracle.” It was signed by these three wonderful girls. Summer and I were obviously beside ourselves. I kept looking at the receipts and turning the gas cards over and over in my hands. It took us a half an hour to regain our composure before we could walk down to their house and somehow tell them thank you. I remember KyAnn stressing to us on that day that these girls came up with the idea, drafted the letter, purchased the gas cards, and everything else all on their own. They just couldn’t get over the response from so many people and had no idea it would be this big so quickly.

At the time I’d thought this was miracle enough, we had already been so greatly blessed, but here’s the interesting end to this story. For over two months Summer traveled daily, sometimes two or three times a day, to be with Ammon at the hospital. The drive was a little over a half hour each way from our home (when I drove to the hospital after work it was still about a half hour past our home). On the day after Christmas when we were going to the hospital to pick up Ammon and bring him home, the tank was empty and we stopped for gas. Almost without thinking at this point I slid the gas card into the reader and pumped the gas. I stood there in the cold brisk wind, pumping the gas, and eagerly thinking of being with Ammon. The receipt printed out and I noticed that the funds on the card had been depleted. I stared in stunned silence at the receipt and again just turned that gas card over and over in my hand. The card had perfectly paid for all the fuel that was required, right up until the last tank, for the last drive, for the last time we would have to travel to see Ammon instead of just being with him at home. I’ve thought many times since how interesting that was, and it is interesting isn’t it. Miracles many times have a way of making us think, and stand back in awe, even those miracles that involve three special young women, a neighborhood of good people, and a couple of gas cards.

Bumps in the Night...

Work on the basement is moving along well (I promise I'll put some pictures out here very soon, I know people are dying to see a bunch of 2x4s and Coleson expertly shooting cans off the top of the water heaters with the nail gun). On Saturday night at about 2 or 3 a.m. Summer and I were rudely awakened by an extremely loud rumbling noise coming from the basement directly under our bed. My buddy "helping with the basement" (i.e., pretty much doing all the work that requires any sort of technical construction skill, such as using a tape measure or tuning in the radio to various rock ballads from the 80's), has occassionally been trying to unnerve me by mentioning "strange happenings" in the basement when it gets dark. So granted when the loud diesel engine caliber noise kicked in at this forsaken time of night, my first thought was, "Oh man, he wasn't kidding!" Summer jumps awake, and we're both thinking the whole house is coming apart. After a few seconds of groggy anticipation, I realize that we had simply left the air compressor plugged in and it had leaked some air over the hours and finally kicked on to re-pressurize. Gratefully the boys did not wake up, and the compressor shut down after 20 seconds or so. Considering the time of night and my initial thoughts of what might be causing the noise, I bravely decided that I would wait till morning to unplug the compressor. Shortly thereafter Summer and I fell back asleep, and I'm proud to note that I bravely unplugged the compressor after church the next day. No strange happenings to report concerning the basement construction, other than our occassional choice of easy listening music while working.

On another note, Sunday was Coleson's first day with his new primary class and teacher. Coleson finally found out that his Mom, Summer, is his happy new teacher, and he is beside himself with joy and excitement at this wonderful development. It was hard keeping this a secret, but well worth the anticipation and surprise that Coleson has been feeling. Ammon is still having a great time in nursery, and I would reiterate everything from the first posting we put out here about Ammon, nursery, and Robin (I finally attached a picture to that first nursery posting).

Santa Claus is Coming...

This past Saturday was the much anticipated annual tradition of Santa Claus traveling through the city on one of the Syracuse fire trucks. We started hearing the fire engine shortly after 9:00 a.m., and it finally made it to our house around 10:30 a.m. Coleson had a great time playing and waiting outside, and fortunately there was a fresh blanket of snow from the night before. Santa yet again did not dissappoint, and it reminded us all again how great this little city is that we get to live in.









This past weekend we also finally bought some tools and materials to start on finishing our basement. One of our good friends in the neighborhood is going to be assisting us in the completion process (heaven knows I can barely wield a hammer let alone a deadly nail gun). We'll throw some pictures out here as we the process begins and continues, and we are always open to design ideas, etc. Right now everything is pretty standard and we are planning on an entertainment/playroom/pool table room (all one big room), an office, two bedrooms, and a full bath and half bath. It feels really weird to say that when all is said and done we will have five toilets conveniently located throughout the house to serve all your toilet needs.

Ammon and Nursery...

Several months ago, one of Ammon’s occupational therapists (Mike) recommended that Ammon start attending nursery at church, and he didn’t want us in there with him the whole time. He recommended that an individual be called to work directly with Ammon during nursery time. Apparently the church handbook has a section in it that suggests callings or other accommodations be made for the inclusion of individuals with various disabilities (makes sense, I can only imagine that the handbook would suggest the same things that the Savior would do if He were performing the act). Summer and I have definitely prayed and worked for the acceptance and inclusion of individuals with Down syndrome and other disabilities and have usually been met with success and greater understanding. However, we don’t consider ourselves to be the “in your face” type of people that insist upon every accommodation for Ammon or complete acceptance. Instead, we have experienced almost without exception that even without any input from our side, people are eager to serve, to learn, and to love our little boy, and we have been so grateful for these blessings.

So we took Mike’s recommendation (after several weeks of deliberation between ourselves) and finally approached one of our bishopric counselors. He was ecstatic and said he would talk to Bishop Everett as soon as possible. About two weeks later a new nursery leader was called (Robin). When we heard that Robin had been called we couldn’t think of a more perfect choice. Robin called us at home and said that she had been specifically called to work with Ammon during nursery. So our little boy became a nursery attender and we were the happy pleased parents. The first week we left him with Robin we showed her a few things on how to help him hold his own head up or sit in a chair with assistance. We initially figured, these people don’t know much about all the stuff Ammon can do and we just didn’t want them to hold him the whole time like a little baby. Though I’m sure our initial suggestions were helpful, we were completely wrong yet again in the power of good people and the sweet whisperings of the Spirit in helping people to fulfill their callings. We were surprised and almost brought to tears when we picked Ammon up that first Sunday from Robin. He was so happy, full of smiles, and was wearing a wonderful yellow crown on his head. Written around the base of crown was the phrase, “I can be a good (example).” You couldn’t see the word example because his head was so small that the crown overlapped the word so it would fit on his head. We had never thought of making a crown or doing other crafts of this type with Ammon. Though Ammon couldn’t walk or even crawl out of nursery like all of the other children, his crown was just like all of the others and he had been able to participate with all of the others. (Debbie, Ammon’s grandmother, almost cries every time she tells someone that her little grandson went to nursery today).

On the second week we picked Ammon up and the response was the same, just pure joy all over his face. Robin handed us a picture that he had colored with a crayon, and again we were amazed. We didn’t even think to let him color, to let him be another little boy in that regard. At home we focus so much on doing Ammon’s playtime exercises, feeding times, and other activities that we had kind of lost sight of some of the other fun things that we can help Ammon do. And here are all of these good people at nursery, and particularly Robin, that help Ammon to color, to enjoy snack time, and to listen during lesson time. Again, we are learning from others that we initially thought we would be teaching, and we are all learning from Ammon’s amazing abilities. Mike was right.

Ammon’s been in nursery for a couple months now, and I can’t get over thanking Robin enough for accepting such an important calling to our family. I am humbled to think that on a regular basis as she prays on ways that she can fulfill her calling, in many regards she is praying for Ammon and receiving little inspirations on ways she is meant to help him succeed in nursery, in ways that in some instances are even beyond our abilities as parents. The direct impact of her fulfilling her calling will in many regards reap eternal blessings for Ammon and our family. I can’t help but want to do better and serve more diligently in my own callings; and similar to Robin, simply try to do the things that the Savior would do if he were here performing the same act.

Halloween, Birthday, and Fun...

Halloween was awesome as usual this year. We decked the house out with spiders, spider webs, rats, pumpkins, haunted houses and other "scary" stuff. Coleson is to the age where almost everything is "not" scary, so we have to step it up a bit to get the real scary factor across. We usually put a fake rat right by the door bell, so when people reach to ring the bell we almost always get a scare. This was one of my favorite parts throughout the night. We had our front windoow open slightly so I could hear when people were coming up, and without fail I would always hear a little "ahh" right before the doorbell rang. Sweet music everytime.

You'll notice from the pictures below that Coleson was a Star Wars Jedi. He was commonly mistaken for Anakin Skywalker, but Coleson always readily corrected them that he was really Obi Wan Kenobi (which is the best Jedi). Coleson has been playing non-stop with his light "saver." Attempts to convince Coleson that it's a sabre were completely unsuccessful. He's got it all figured out already, "It's called a light saver Dad because you use it to save your life." No getting through that logic. Ammon pulled off a sweet Batman, although it was a tough decision as to whether he should be Harry Potter with the glasses. Let me summarize with this, though I love my two boys dearly and they are way up there on the cuteness factor in my book, Summer pulled off the coolest costume for the night. She was Princess Leah, and oh so beautiful!




Ammon had his 2nd birthday on October 20, and he had a wonderful time with everyone. We had the traditional bubbling blood punch with the floating green hand, and lots of other "disgusting" food to eat. Ammon did a decent job attacking his cupcake, although we had a trial run about a week earlier where the performance was much more spectacular (so much so that when Ammon was done and completely covered his whole upper body with cake, Summer pointed to me and said, "this is your grand idea, you clean him up.")

Buddy Walk and 5K Buddy Race 2007...

The Buddy Walk and 5K Buddy Race were an awesome success. We got up early on Saturday morning and drove down from Park City in time for the 8:30 a.m. 5K start time. Coleson and the rest of us have been excited for this event for weeks, and there were no significant problems getting up at the early hour. Despite strong predictions of rain, we and Leona (our chapter’s president) had been “ordering” sunshine, and abundant sunshine is exactly what we received. It was perfect running conditions. Let me give a little more background to the whole 5K experience. I personally have been training hard and steady for at least the 2 or 3 days prior to the actual race, so obviously I was in peak condition to excel (I did actually run twice the week of race and that helped marginally). My training regimen consisted of eliminating all desserts from my meals, or at least half of the dessert from half of my meals, or just eating a whole dessert like I normally do (a flexible regimen is usually the best regimen). Additionally, I only had two filet mignons during the week, one on Wednesday and one 12 “ouncer” the night before (a big chunk of meat, a ceasar salad with real anchovies, and a lava chocolate cake are excellent items to eat within 12 hours of race start time). Summer joined me in my regimen for the night before meal, and likewise downed a 12 “ouncer” (give it up for Summer, that is an incredible accomplishment that makes me one very proud husband). Race time came and we were pleasantly surprised to see so many of our friends and family there, and participating. This is the first time we have included a 5K in the Buddy Walk, and Team Ammon easily had the most overall participants in the 5K event. In fact, after the whole event was over and I was at Leona’s house counting the funds raised with Leona she indicated that we had the most overall team participants. There were 43 total people that showed up for team Ammon for either the Buddy Walk or 5K Buddy Race or both, and 38 were registered participants.

The race is about to begin and Summer, Coleson, Ammon, and I are surrounded by our coworkers, family, and friends. For weeks I had been predicting the great “Cheney meltdown” that would occur at about mile 2.5, and to be able to witness this meltdown was the only motivation some of my friends needed to attend the race. Right before the race was to start I realized that my Ipod battery was dead and I would be unable to listen to my essential Rocky songs (this obviously was a key factor in my overall performance, notwithstanding my other extensive preparations). The race began and we were off. Now all joking aside, here’s my humble opinion of my incredible wife, and I know each of you can picture this because this is just the type of person that she is. Summer runs the entire race without stopping once while pushing in front of her a bike trailer with our two wonderful boys in it (and the diaper bag, water bottles, etc). Imagine running a 5K with a respectable time while pushing a 60 pound weight in front of you the whole time. It’s inspiring to see, and she does it at the 5k Buddy Race, the Syracuse 5K, and the Race for the Cure, so that Coleson and Ammon don’t have to sit on the sidelines and be observers, but are able to feel the excitement of the race and be participants. The sad part on my side is that Summer is truly pushing this trailer all alone the whole race, because my expert training regimen barely allows me to run the whole race without stopping (I’m feeling very motivated at the moment). Coleson’s responsibilities during the race are to yell encouragement to his Dad and to primarily take care of his brother. The entire race Coleson has him arm around Ammon, to ensure his little brother’s head is properly held up and that he remains in a comfortable position. Because of this attentive care Ammon is usually as content as can be, and has sometimes fallen asleep to the motion of the bike trailer. The results of the race were awesome. Our friend, Jeff Goddard, won the entire race by a 30 second margin of victory. Jeff’s sister came in second overall for the women participants. My brother, Kevin, came in second for his age category (he indicated before the race that we have to put in a good showing for Ammon, and Team Ammon did not disappoint). Our family came in at just over 30 minutes, with Coleson running the last 200 yards himself, and all of us being cheered across the finish line. Our family’s goal for the race was to simply participate and support Ammon and his friends, while people like Jeff and Kevin added the necessary respect to a first time 5K event like this. We already have even bigger dreams for next year.

The Buddy Walk started about an hour after the race was completed, and again this portion of the event did not disappoint. There were hundreds in attendance, with many of them directly in support of Ammon. Coleson and his cousins walked away with handfuls of carnival prizes, face paintings, and hotdogs for lunch. A local group of children with Down syndrome performed several dance routines after the one-mile walk was completed. Jessie and Loraine came to the event with their three children, Suzanne, Matt, and Ali (each one has Down syndrome and Loraine is primarily confined to a wheel chair due to brain cancer). This is an awesome family and we feel so lucky to have them as friends.

We’ve always said from the beginning that it was not the donations that mattered most, but that people just come and experience the magic of this event. But let me share just one bit about the financial side of this event. After the Walk was over (and the BYU game of course), Leona and I were sitting at her kitchen table counting the donations and preparing the bank deposit. Leona insisted that I run the 10-key machine, and soon we were through the cash, checks, and change. Brace yourselves: this one event raised over $7,000 to support individuals with Down syndrome (last year we barely cleared $4,000, primarily due to the rain). There are so many awesome things that this money goes to support, including research, public awareness, and community activities. But while we were counting the donations, Leona and I discussed one particular family that will be greatly benefited by the activities these donations help to fund. During the Buddy Walk Summer met a young married couple that lives about five minutes from our house and about three months ago had a beautiful little girl with Down syndrome. The Buddy Walk was the first “Down syndrome event” they had attended, and it was exactly what they needed. The good mother was still taking the reality of having a child with Down syndrome very hard, and she was grateful to meet other parents that live near her. When Leona had visited them soon after they had their baby the mother was very emotional and distressed during that meeting as well. What some of these donations allow our UDSF chapter to do is prepare newborn packets that are personally delivered by parents with a Down syndrome child (Summer and I are preparing to be part of this process, especially in regards to the new fathers). As we deliver these packets we have the unique opportunity of sharing with them about our experience with Ammon (and our extended family’s experiences). From the start we were all able to see the miracles surrounding Ammon, and because we saw those miracles we never really felt any discouragement about Ammon having Down syndrome (Down syndrome in itself was another type of blessing in our eyes). As these new parents start looking for the miracles occurring in their new little baby’s life, we can only hope that any feelings of disappointment are quickly replaced by hope and joy. And as these new parents start attending the Halloween carnival, the Christmas breakfast, the Spring party, and numerous other activities not only will their children feel accepted and loved, but the parents will form common friendships and be able to go out in the community with a feeling of support and acceptance.

I could go on and on about the Buddy Walk. I just can’t stop feeling so grateful for so many good people and for Ammon. Thanks again to all of you for loving and supporting Ammon, he couldn’t have been born into a better family. (As more pictures come in we'll be sure to post them up).

Ammon is One Year!

A strange feeling came over me today, a sort of déjà vu. We have just wrapped up the Q3 review of my client located in Santa Ana, CA and here I am sitting in the airport. There are a lot of people here today, all four of my coworkers are here with me, and we are all flying home. It was one year ago today that I was standing alone here in this same airport, an emotional wreck, not even able to get out one complete sentence. Summer and “Baby Cheney” were going through the most traumatic experiences of their lives, with only one family friend there to be a witness to the events. The last message that Lisa delivered was choppy and breathless. “Why are you breathing so hard?” I had asked. “I’m running to keep up with the doctors!” “Why are they running?! What’s wrong?” “I don’t know…they are doing the surgery now, right now!” And that was it.

I think two of the largest differences between today and one year ago are these, I’m not alone this time and I know that everything is okay at home. In hindsight we’ve come to realize that we were not alone that day either. Some of ‘Baby Cheney’s’ angel friends were there, maybe quite a few of them. They were whispering strong warnings and encouragement to Sherry, “Go ahead, put the heart monitor on anyways… just go ahead…” They were there steadying the hands of a very experienced surgeon just a little more (“most traumatic surgery I’ve ever performed, but yet it was one of the best I ever performed,” he said). They were there calming and reassuring Summer, in even the most gravest of circumstances. Most importantly they were there helping their precious little friend, the one that had just left their presence. They were there standing vigilant watch over him for many hours after he arrived before earthly family and friends could come visit him. They reminded him of his strong courage, of his strong desire to come no matter the immediate circumstances. They reminded him that he was loved. I know that there were spiritual friends and family there that day and I’m grateful everyday since that they were allowed to come. It’s been one year, and it has been a wonderful and growing year. Ammon’s heart is okay, his eyes are okay, his hearing is okay, his breathing is okay, his eating is okay. He brings so much light, happiness, and joy into so many people’s lives. He brings so much gratitude and humbleness into ours. As we celebrate this amazing day with Ammon, we just wanted to say thank you again, and again, and again to all of you. It was you that prayed for Ammon, that had his name placed on the Temple rolls, that fasted on his behalf, that brought us breakfast, lunch, and dinner, that cleaned our home, that did my work, that blessed us with so many gifts, that filled our cars with fuel and our fridge with food, that watched our other precious boy Coleson, and that loved us and supported us.
On this truly amazing day, we just wanted to say thank you again, we are ever grateful.

Buddy Walk 2006!

We had the much anticipated Buddy Walk on Saturday, and it was awesome to say the least. There was a slight "drizzle" most of the time, but nobody ever really got drenched. As a family we were very impressed with the large number of people that came to the event despite the inclement weather. My Dad even made the comment that he really didn't see that many individuals with Down syndrome, which to some extent pionts to the success of the event even with the weather (additionally, many of the Down syndrome individuals were young children or babies being held by families). With only one in every 800+ births resulting in an individual with Down syndrome, the true sign of success at an event like this will be when we have 800+ people show up in support for each individual with Down syndrome. But until then, there were still many wonderful opportunities to meet and interact with so many of these wonderful individuals. Another note, the number of volunteers at this event was amazing, especially the number of youth volunteers (I'd never really even thought of volunteering for something like this when I was 16). Thank you again to all of you for being such a wonderful support for the Walk. We've been humbled many times over at your kind words, generosity, and service. All told, Team Ammon, which includes KPMG, raised over $600 and probably much higher than that amount (I don't have the final tally as of yet). I can't help but think of the incredible blessings these donations will provide to future families blessed with a Down syndrome child that don't have the exceptional support system we have been blessed with. The driving purpose of the Buddy Walk is to promote understanding and acceptance, and based upon the number of people that have stopped by my office, come by our home, or thanked us for the opportunity to participate (that still seems a little backwards to me) I can't help but feel a great hope in Ammon's future. I've rambled too long, thank you again. We've attached a few of the photos from the Buddy Walk, if you want to see more let us know.

Ammon with Glasses...

Ammon got glasses today. He just makes me smile and laugh. I feel bad for him, so today was a holding day. He is farsighted so we are hoping this will correct his cross-eyed problem and prevent having surgery. He was looking all around and it seems like he can see me without having to get close to his face. When Coleson first saw Ammon with his glasses on he said, "He looks like a dad!" We threw in a couple of other photos from the past several months, including Coleson's swim lessons from last week. Our little swimmer actual put his face in the water (this was a big moment for all involved)!

UDSF BBQ...

Saturday we went to the Utah Down Syndrome Foundation (UDSF) Davis County chapter BBQ. This is our first big event getting together with other families that have children with Down syndrome, and we were all excited and a little nervous. The nervousness, at least for myself, was centered primarily around not knowing anyone at the event, and slightly less so by not knowing what to expect. I felt like everyone would be friendly and cordial, but I was kind of worried of being the new "friend" among people that are already best friends. I was also concerned about Coleson's perception of the whole event, would he have fun, would he make friends, would he want to come again?

After some driving around we finally found the pavilion at the park and immediately we could tell this would be something special. There were balloons on every table, tied to plastic beach buckets with little shovels and several bottles of bubbles inside. The grass next to the pavilion was covered with inflatable watermelon size basketballs, golf balls, and baseballs, that were the perfect size for a little kid to kick or catch. A card table was set upon the grass with two girls sitting there doing a variety of face paints. Once we got our nametags on Coleson immediately ran over to girls and got a green crescent moon painted on one cheek (before the night was done, Coleson had a blue ladybug painted on the other cheek). A bubble machine was blowing bubbles across the play area, and two large buckets filled with bubble solution were set up so you could dip children's clothing hangers in them and then run around screaming while creating "monster" bubbles.

From the moment we arrived people started saying hi to us and introducing themselves. It was nice to put a face to some of the names that I heard before. Instant friends were almost an understatement with some of these people. One lady, Janet, came running up to Summer and neither could believe that the other was really there. Janet and Summer used to do aerobics together several times a week before Ammon was born. Janet and her husband live in our stake and have four beautiful girls and Aaron, a 9-month "big" baby boy that is right around 19 pounds (Aaron also has Down syndrome). Apparently, about two months before Ammon was born, Janet was one week short of being full term and gave birth to Aaron. Both Summer and Janet had heard from friends that "someone" else in the stake had recently given birth to a child with Down syndrome, but both were obviously very surprised they would actually know who the other person was. Now I don't know if you have picked up on an interesting little fact yet, but Aaron's names is, well Aaron (and Aaron's middle name is Ammon). In the scriptures, Aaron and Ammon were brothers that were incredibly valiant and powerful instruments used to bring thousands to a knowledge of the Savior. Thinking back on the experiences we've already had with Ammon concerning who he is and his time before he came to our family, I can't help but be reminded of the special little person he is, and the special big person he once was.

The night was a complete success in so many ways, and I just wanted to share two more of those with you. First, Coleson had a blast, he was an excited kid at a carnival. About half way through the night a smiling clown showed up (a very friendly, very round, fun looking clown, not the other type that some people get scared of). The clown wasn't into the whole juggling pins or spraying cold water from a fake flower, he was all about the subtle jokes and making balloon stuff, which in my opinion is the best kind of clown. Coleson and a bunch of the other kids received balloon swords, which were an instant hit, literally. The kids were whacking each other as hard as they could and just loving it. Coleson got into a sword fight with several other kids, two of whom were at least 9 or 10, and this is when we fully realized that Coleson will probably be just fine, if not much more than just fine, in the whole Down syndrome world. Summer noted that for once there were kids much older than Coleson, who Coleson was trying to play with and they were gladly playing back with him. Coleson could have cared less if the two had Down syndrome, he was just ecstatic to have older kids actually wanting to play with him. Coleson grudgingly left the event when it was all over with two balloons, two face paintings, an alien balloon figure, a shovel and bucket filled with two bottles of bubbles, and a big smile on his face. It seems like we've had a lot more perfect nights since Ammon joined our family.

Second, I wanted to tell you a little more about Aaron. It was awesome to talk with Janet about just a few of the experiences her family has had with Aaron. Aaron recently had open heart surgery, but you wouldn't know from looking at him (about 50% of children with Down's syndrome have heart problems severe enough that it eventually requires surgery, sometimes several surgeries). The scar down the center of his chest is a thin red line that almost looks like a scratch. The surgery was a success and he healed very quickly afterwards. You could tell this is only one of the many miracles that Aaron and his family have already experienced. Summer and I got talking last night while going to sleep and another interesting thought came to mind. You all know that Ammon came to us quite early, and one of the many things he came with were three little holes in his heart of varying degrees. You'll also remember that over four months after his birth we went to his cardiologist who performed extensive procedures and noted the following: two of the holes had completely disappeared and the third hole had become so small that surgery probably wouldn't ever be required. I can't help but wonder with retrospective view, knowing what we know now, that part of the reason why Ammon came so early was so the Lord could perform his miracles on Ammon's heart before his heart had the chance to develop more fully. Maybe if Ammon had gone full term, an additional two months of development would have occurred on Ammon's heart that might have been the wrong kind of development, and he could have ended up with three holes that were not so little. Then I think of all the prayers offered on Ammon's behalf regarding so many things, including his heart, and the Lord the whole time giving the comfort that Ammon's heart would be just fine; He knew long before we knew, and all He has asked of us is to trust in Him. It has been said that the Lord works in mysterious ways, and I've come to understand that some of those mysterious ways are really various miracles that eventually get us to the same result. I'm filled with joy everytime I think of the miracles that Ammon has been blessed with, and I'm filled with peace by simply trusting in the Lord, even when trusting feels hard and we don't always know the end at the beginning. Our family will gladly take the daily trials along with the daily miracles, knowing that the Lord knows us and He works from an eternal perspective. And with the knowledge that our family is truly an eternal family, with intense charity for each other, this perspective is just fine with me.

Hearing More Good News!

Today, Summer and Ammon went to the audiologist to have another hearing test performed on Ammon. Ammon has had three hearing tests since he was born, and each test has resulted in a "failed" score, for both ears. Today's test was more in depth than the prior tests (an ABR), and was essentially meant to determine the type of hearing devices that Ammon would need to hear properly. Summer said that Dr. Harward was a very nice and very experienced individual, and apparently he was one of the forerunners on working with infants and their hearing. After performing the test, Dr. Harward informed us that Ammon had successfully passed the test and his hearing was perfectly normal. Our whole family is so ecstatic that Ammon can hear. We've had our assumptions, he always loved to hear Summer's voice and will readily smile and "coo" when she is talking to him.

Despite some of the future unknowns that Ammon will still experience, we are so grateful for the blessings that he has received and the challenges that are being conquered. For example, three weeks ago we brought Ammon to Dr. Day, Ammon's cardiologist, for another heart checkup. When Ammon was born he had three holes in his heart and some difficulty in getting oxygen into his blood. Dr. Day performed chest x-rays, an EKG, and an echocardiogram during the two hour visit. The results of these tests showed that two of the holes had completely dissappeared, and the third hole has significantly reduced in size. There was still some thickness around his pulmonary artery, which results in Ammon having his oxygen on for several more months. But again, we were simply humbled and in awe at the good things that have happened with Ammon. Ammon came into this world as a miracle in so many ways, and I suppose he figures that he's got to maintain the "Miracle Boy" aura. Again, thank you everyone for your faith and prayers, He is listening, and answering.

Love, Brian and Summer

Updates on Ammon...

Ammon is a whopping 9lbs! He is rolling over and so close to smiling. He had his hearing tested this week and failed, so he will be doing an ABR next month and will probably get hearing aids. He also had a sleep test this week where his oxygen saturation was tested throughout the night without the aid of oxygen and he wasn't consistant, so another month with oxygen tubes.(no more apnea though) He is nursing regularly now and holds his head up well when he is on his stomach. We go to the cardiologist later this month. thanks for all the prayers! he's a cutie!

Ammon is Home!

"Below you'll find a series of stories about Ammon, our little miracle boy, around the time of his birth. We still have friends and family that chance upon these posts and are amazed, just like we constantly are, about all things Ammon. These posts are only the beginning, please click on the "Ammon" label for additional inspiring stories about this precious kid."

We received a call from the doctor on Christmas Eve that Ammon was ready to come home. We were so excited and shocked. I thought he had a few more weeks but all he had to do was drink a 2oz bottle. He surprised everyone and did it last week. He has made huge progress as far as eating and breathing over the last week. Brian and I spent the night at the hospital on Monday in the bonding room. It is like a trial night right across the hall from the NICU. Everything went well and Ammon has been great this whole week at home. He is still on oxygen, so we have a heart rate and respitory rate monitor. They took out his feeding tube and i have started to try to nurse him. It's hard work for him, just like everything else has been, so i am confident he will eventually get the hang of it. Overall he is a great baby already on a 2month old schedule, but similar development to a newborn. He is now 4lbs 12oz and 18in long. Our cute little miracle is home.

Ammon's Stories...

Story of Ammon's Birth

This posting is much longer than we intended it to be, so the whole story is not here. This posting is a portion of some of the many things that happened right around Ammon's birth, told mostly from my point of view. So please forgive me if I've messed up some of the details, but I think in total my "research" is pretty solid.

So here’s the story from several points of view.

On Tuesday, October 18, Summer went to her obstetrician appointment for the normal pregnancy checkup. At this point Summer was about 2 ½ months from her due date and most everything seemed to be moving along fine. Summer and I had felt a little concerned that she hadn't felt much movement with the baby over the past few days, but there were little bits of movement that kept us thinking everything was okay. During the appointment the obstetrician noted that the baby seemed small and did not appear to be at the normal growth rate for this stage of the pregnancy. The doctor was concerned enough to schedule an appointment with a specialist at the Ogden Regional Medical Center on Thursday, in which the specialist was to perform a thorough one hour ultra sound to identify any potential issues.

Summer called me in Santa Ana, CA (I was out of town on business for all of this), and let me know the results of her obstetrician appointment. We were a little concerned, but no one, including the obstetrician, expressed any concerns that this would become an immediate issue or that I would need to fly home before Friday. On Wednesday, Summer became a little more nervous and some good friends in our neighborhood (Kendria) came over to see her and spend the night with her. Two of our friends (Mark and Steve) gave her a priesthood blessing and part of the blessing ensured Summer that no issues would go undiscovered during her appointments on Thursday. Little did we know at that time how inspired that blessing was, and that the Lord would ensure that not even the tiniest heartbeat would go unnoticed.

At the wise request of Summer's Mom, Debbie, Summer brought a friend with her to her doctor appointments on Thursday (Lisa). At the specialist appointment several issues were discovered with our little boy. Apparently he had some fluid around his heart and stomach that was causing some concern. Additionally, for whatever reason he hadn't been receiving nourishment from the placenta and it had been this way for approximately three weeks. Finally, blood was not flowing properly within the baby's heart, which was causing some other immediate health issues. The doctor indicated that each of these items as separate issues was not an immediate concern. Essentially, on their own it appeared the issues could be dealt with medically and the pregnancy could continue forward. However, all together these issues presented a serious problem for our little boy and the doctor recommended that a C-section be performed within the next 24 to 48 hours. The process was set in motion for the surgery to be schedule and performed.

Summer called me with the news and I was completely floored, it was about 1:30 pacific time. I started cleaning up my computer stuff while she was still on the phone and after hanging up I told my coworkers that I was leaving immediately. I guess my hands were shaking as I started cleaning stuff up, because my coworkers just jumped in and put the rest of it away. My friend drove me to the hotel to pick up my suitcase and then to the airport (Dan Rinehart). He also called ahead to the airport to make new flight reservations. At the airport I had uneasy familiar memories from when Coleson was born. I was out of town then as well and barely made it home with only two hours to spare before the actual birth occurred. Summer, without a single complaint and more courage than I'll ever muster, had essentially done the whole first labor process all alone, and I was about to fail her again.

While I was waiting for my flight I was calling everyone and giving them the limited information I had. I know I freaked a few of my friends out because I left them these choppy emotional messages that really didn't give many details (unfortunately I didn't have many details to give). My flight was at 3:00 pacific time and I had about twenty or thirty minutes to wait before boarding and flying home. I had walked almost to the end of the terminal and there was no one else around. I got a call from Summer's phone, and was surprised to hear Lisa’s voice instead of Summer's (I actually thought at first that it was the doctor or nurse I was speaking to). She was breathing really hard, and I understood, "going to the O.R.," and "C-section is being performed now!" "What did you just say?" I asked her. She repeated herself, and I quickly asked her why she was breathing so hard. She indicated that she was trying to keep up with the doctors and nurses her were currently running to O.R. while pushing Summer. "What do you mean running, what's happening...what's wrong?" Out of breath she repeated again, "I don't know, other than they are performing the C-section immediately." We talked a few seconds more and then she had to go to try and put on her scrubs in time. She said she would call me as soon as she knew anything more. We hung up, and I realized that I had not been there again, but this time I missed everything. Even worse, much worse, I didn't know if our little boy or my beautiful Summer were okay. I looked at the time. It would be at least two hours before I would find out anything else. The flight home was exhausting and unbearable, the details of many of the scenarios being played out in my mind are I hope at some point more forgettable. However, a measure of peace did come on this flight (prayers are sometimes answered in the very moment of need). One promise that was clearly brought to my heart, and for which I became so grateful for during this flight was the knowledge that my family will be together forever, no matter the immediate circumstances.

Backing up a bit, Summer attended her appointment and they discovered each of the items noted above. A C-section was being scheduled to be performed, and Summer was going to be transported by ambulance to St. Mark's Hospital down in Salt Lake City. Apparently, there was a baby heart specialist at that hospital that the doctors thought might be needed due to the fluid around our little boy's heart. The calls had been made and the ambulance was on its way. One of the nurses that we will never forget, Sherry, came over to put a baby heart monitor on Summer while she waited for the ambulance. Sherry was told that it was not necessary since the ambulance would be there within three minutes. She responded, "That's okay, I'm here’s anyways, let's just hook it up," and she did (there's more to this part of the story as well, Sherry came and talked to us several times over the next few days to share with us the distinct impressions she had to put on the baby monitor, she just had to hook it up (she describes these impressions as little angels whispering over her shoulder); remember, as promised during the blessing, nothing was to be left undiscovered). When she hooked it up she noticed that the baby's heartbeat was approximately 110 beats per minutes, which is on the low end of the normal range. No immediate concerns. Within the next minute our little boy's heart rate dropped to approximately 90 beats per minute, which instantly caused concern among all the professionals present. The monitor became the sole point of attention. (In my mind I always picture the professionals gathering around Summer and the monitor; no one is breathing, there is complete silence in the room, and everyone is wishing the heart rate would miraculously increase, just like in the movies. In the reality of the moment, there was no time for even this brief pause). Suddenly, his heart rate dropped to a mere 45 to 50 beats per minutes and did not show any signs of improving. In those three minutes, our little baby's condition became more than critical, his life was rapidly slipping away; another few minutes, literally, and our little boy would leave us before ever arriving. Summer and Lisa described the doctors' and nurses' actions as becoming almost frantic, with a life-saving decision being made that an emergency C-section must be performed immediately to save our little boy's life.

The professionals had already placed Summer on a gurney to wheel her to the operating room, which was located quite some distance from where they were currently at within the hospital. My initial impression when I hear the term “wheel” is a significant understatement of the sprint that was actually occurring. Everyone was running and pushing, not jogging, as hard as possible. Lisa, being several months pregnant herself, was having a hard time keeping up. It was at this point that Summer speed dialed my number and handed the phone behind her to Lisa to try to explain the current situation to me (this clearly explains Lisa's lack of breath and lack of information as to what exactly was going on).

The group actually ran past the EMTs from the ambulance that had arrived to pick up Summer for her transport to the other hospital. One of the professionals shouted to the EMTs, "This is your transport, standby and we'll let you know if we still need you to transport the baby." Summer described numerous people appearing as they raced down the halls of the hospital offering their services to the doctors and nurses already pushing Summer along (sort of like, "I'm Doctor So-and-so, how can I help?!"). Some of the nurses lightly joked, while out of breath themselves, that this was definitely their workout for the day. Summer noted that as more people joined the "push and run" they moved faster as faster, it was a full sprint at the end. By the time they finally reached the operating room the team of professionals had swelled to well over 15 people, all scrambling to prepare for the operation. Usually there is even minimal preparation time before a major surgery is about to occur, even with ambulance emergency deliveries, but in this instance the professionals performing the surgery did not yet even know Summer's name or even indicate what exactly they were about to perform. Some items were actually being knocked over in the room in their haste to prepare for and perform the operation. All they had time to obtain was a verbal approval from Summer that an emergency C-section could be performed to try to save our baby's life. Summer was given a general anesthetic, quickly fell asleep, and the operation began (Summer later indicated that she almost felt like telling everyone to "just take a breather" and "everything would be okay." This clearly emphasizes the fact that events had progressed so quickly that she didn't even have a chance to fully grasp the gravity of the entire situation; but even more so than this, Summer had received a blessing that everything would be okay. Not only did she believe this, but she knew it to be true).

Dr. Marriott was the individual that performed the operation, and he came and talked to us several times over the next few days to relay his understanding and feelings of the whole event (which is really rather unique for this type of doctor). During our first visit subsequent to the surgery, he initially apologized to Summer for not even knowing her name or introducing himself before the surgery began. He indicated that under less time-constraining circumstances, when a C-section is performed an appointment is made, there is time spent before hand explaining the procedure to be performed, becoming acquainted between the doctor and the patient, etc. He indicated that it was fortunate that he was actually at the hospital at the time when our baby's heart rate plummeted, and was able to perform the surgery immediately. If Summer’s appointment had been on any other day but that Thursday, he would not have been as easily accessible, or even at the hospital. Finally, he indicated that this was the most stressful and traumatic surgery he had ever performed. We had no idea! Imagine hearing this from a doctor that has performed hundreds, if not thousands of these operations so far in his career. Perhaps this is why he was concerned enough to make several visits, this was actually an event, out of the countless others, that he would remember. I feel confident that he fully realized that he was a key part of the miracle. Despite the admission of the stressful surgery, he further indicated that the surgery itself went absolutely perfect in every way (he essentially said the positive side of the whole operation is that Summer received an exceptionally tight tummy tuck; not that she’s ever needed one). Each visit he asked about our little boy and was pleased to hear that he was stable and constantly improving. It seemed that in these extreme critical situations he was aware that the results were usually not this positive. (On a side note, we came to learn later that an emergency C-section is much more traumatic on the body than a normal C-section. Summer had a long painful haul in front of her, and it would be many months before she could pick Coleson up. Around six months after the surgery Coleson was running around and fell and Summer instinctively picked him up. As the realization hit that she was holding Coleson, they both almost cried and just held each other tight (for a two year old, this day had been a long time coming and Coleson didn't want to let go)).

My mother-in-law, Debbie, came from California on Tuesday and the first thing she wanted to do was go see Ammon at the NICU (Ammon Everett Cheney is our little boy's name, there’s a story there too). Debbie had just finished her radiation therapy during the last part of September, and had received approval on Saturday to travel out to Utah. On Monday she also went for her heart checkup and everything appeared to be working fine (one of her cancer medicines is prone to cause heart problems). On our way to the NICU we usually walk past the nurses’ desk to say hi to some of our new friends. I noticed that Sherry was there and whispered to Debbie, "That's Sherry, she's the one that saved our little boy." Sherry was busy with something and hadn't looked up yet. Summer and I had kept on walking, but Debbie had stopped right there. "I have to tell her Thank You," Debbie said quietly with tears welling up in her eyes. Sherry eventually saw us and came over. It turned into a rather unique and emotional moment for everyone, that I hadn't entirely expected. Debbie gave Sherry a big hug and told her thank you so much for saving our little boy. Sherry expressed again her feelings on the whole event and the inspirations she felt to hook up the monitor. She also told us that a meeting had been held at the hospital, and due to the circumstances surrounding Ammon's birth a new policy had been implemented. It now became a requirement that all expectant mothers be hooked up to a heart monitor, even if they are simply awaiting transfer to another hospital by ambulance. Up to this point our "little miracle" had already been changing lives for so many people, now he was also saving lives.

On this same visit, Coleson was also with us and he and I played outside the NICU while Summer and Debbie went in to see Ammon (due primarily to the time of year and potential sickness, young children are not allowed in the NICU; unfortunately, this included Coleson and there are no exceptions even for family). It was during one of Ammon's feeding times so the visit lasted a little longer than usual. When Summer came out, I went in to sit with Debbie and Ammon a little longer. While I was washing my hands I could hear Coleson outside crying uncontrollably. My heart went out to him and I left the NICU to see if I could comfort him. He wanted to come into the NICU so badly to see his baby brother. In his eyes everyone could see his brother except for him, and he didn't understand why. I asked Summer to go back into the NICU and I would stay with Coleson. I picked him up and asked him if we could go get some lemonade (the hospital has a fountain drink machine available to all patients and guests; one of Coleson’s favorite things to do at the hospital is to go get a cup of lemonade). On our way down the hall he turned and earnestly said to me with tears still in his eyes, "Daddy, I promise I won't touch Ammon…I promise I'll just look." I gave him a big hug, told him I loved him, and said again quietly, "let's go get some lemonade." What do you say to such an honest statement from a little boy who understands so much around him, but cannot understand why he can't just see his little brother.

Based upon this experience we have tried our best to not bring Coleson to the hospital for extended periods of time. Some amazing things have come about with this decision. So many people in our neighborhood have asked repeatedly what they can do to help, and watching Coleson for several hours each day was one of our greatest needs. The response from our friends, family, and neighbors has been incredible. There literally became a long waiting list of numerous families that have asked for the opportunity to watch Coleson (people have even changed their own schedules on a last minute's notice so they could have the opportunity to watch him). The large majority of these tending times have been very positive experiences for Coleson. Everyone has given him an additional measure of the love and attention that he needs during this time. So often Coleson has been reminded by all of these wonderful people that he is still very special and very much loved.

A little over three weeks after Ammon's birth, Summer and I became concerned that the daily babysitting sessions might be wearing on Coleson. After a particularly difficult day for Summer and Coleson, especially on the part of Coleson, Summer had to attend an evening youth activity at the church that would essentially consist of having to sit still for approximately an hour. I was unavailable to watch Coleson and asked Summer to take him to one of his favorite families (earlier in the day Summer called me and had said that Coleson almost dejectedly asked, "who's house do I go to today?"). I called after the event was over and learned that Summer had decided to take Coleson with her. Apparently, once they had arrived at the activity, Summer sat down next to Kendria (one of Coleson’s favorite people), and Coleson climbed right up on her lap and sat there for nearly an hour. She held him tight the whole time, and Coleson's whole countenance and attitude had changed. He was all smiles and happy. Everyone at the activity made it a point to come say hi to Coleson and give him a hug. At one point, he accidentally let go of a balloon he had and it popped on the ceiling. Everyone turned startled and looked at Coleson, and then started smiling and clapping. Coleson's smile covered his whole face. Summer said that Coleson felt so special and important, this whole night was another answer to yet another prayer.

Ryan (Summer's brother) did this next posting for us shortly after Ammon's birth (he was still baby Cheney then).
Summer and Brian are proud to present the newest addition to their family.

The new baby boy came on October 20th about 3:30 in the afternoon. Due to some health concerns, the doctors decided to do an emergency C-section... 2 months before the due date.

The surgery went perfect, the baby is fine and Summer is doing great.


Weight: about 2.7 pound (when it came out)
Length: about 16 inches
Name: haven't decided yet...came a little too early. (any suggestions??)(I vote for "Mini-Coleson")

The baby will stay in the hospital for the remaining 2 months to make sure that it gets all the nutrition that it needs. We are all so happy and glad that the process went smoothly!

Enjoy the pictures!(you can click on them for a larger view)









Ammon's Name
I am trying this out before I go home because I want everyone to know our baby's name is Ammon Everett Cheney. Ammon (from scriptures we were reading one night in the hospital about Alma and Ammon rejoicing over their success and we were rejoicing over our blessings with the baby and how he has to be so strong physically and spiritually; thanks for President Hinckley's challenge). Everett (means strong and we just liked it). Today I came home from the hospital and am slowly walking around. I got to change Ammon's diaper today with the nurse's help and hold him last night (I'm only allowed to hold him so rarely and for short periods of time). It was so exciting. He is doing so good. His blood is still low on the clotting factors but everything else is getting up to normal levels. Thanks for all the prayers and support! I will try to post updates, remember I am not to internet savy. Summer



Ammon is Six Weeks Old
Ammon is doing well. He is at 3lbs 10oz. He is still on oxygen, but down to 30%. He passed his eye test. Sometimes when premies are on oxygen for long periods of time, the blood cells on the back of their eyes stop spreading across and the retna detaches which causes blindness. His blood cells are growing all across, so he is good. He is drinking out of a bottle about 2-3 times a day. He drinks up to 1oz, but it is usually less. On Friday I got to try to feed him the bottle. It takes all his energy and the hard part for him is swallowing. He drank 7cc and then he was wiped out and stopped breathing so then it was time to let the nurse take over. He recovered breathing just fine. I was so proud of him. I also got to change his diaper for the second time. We are so grateful for everyone's prayers. Our neighbors have been a tremendous help in watching Coleson everyday for us. We have been grately blessed.



Coleson and Ammon's Story
Our little boy has had some unique challenges already in his life, and some of those challenges will probably continue with him for his entire life. On the night of Ammon's birth, Dr. Berger came and talked to us about some of the challenges Ammon was currently experiencing, most all were health oriented, most all were curable. As he went down the list, I remember thinking that each issue appeared short term in nature, with no life long consequences. Ammon was our miracle boy; I had no doubt that a miracle so great would not be allowed to disappear within such a short time after its occurrence.

I don't know if it was the way Dr. Berger was presenting it to us, or if I was still partially in the mind set of when I was flying home on the plane, but after he would finish describing one issue I knew there would be another to come. I felt like he was prepping us, I couldn't take my eyes off him (at least I had the luxury of actually seeing Dr. Berger, Summer was still unable to open her eyes and was listening quietly). He concluded telling us about all of the health issues. "There are medicines and procedures for each," he said, "he'll be just fine by the time he leaves the hospital." There was a brief pause. Though the room was full of family, yet it was completely quiet and I saw no one but Summer and the doctor. "There is one more concern I have," said Dr. Burger. He proceeded to describe to us some of the unique characteristics of our little miracle boy. He had strong assumptions that Ammon had Down syndrome.

I can't exactly describe how I felt at this point, but I know how I didn't feel. Despite the intense swings in emotion and stress I had felt this day, when I listened to Dr. Berger's assessment I definitely didn't feel worse.

Some of my friends have told me the familiar story of why Ammon and other children with Down syndrome or other similar disabilities come to Earth with those conditions. They have expressed that Ammon was one of the brave and courageous individuals that not only actively participated in the pre-existent war in Heaven, but he was one of the ones that literally drove Lucifer and his followers out of the gate. Feeling the spirit of Ammon and the bravery he's shown so far in his life, the story appears completely plausible and fitting. However, there is another story told to me by Summer that is more than just comforting or possible, I know it to be real and true.

Summer and I were sitting with Ammon in the NICU about a week and a half after he was born. Dr. Mohan called to speak with us and I talked with her on the phone. It was a similar conversation to the one we had on Ammon's birthday with Dr. Berger. Things were improving in Ammon's overall health condition and were expected to continue to do so. Then she paused just like Dr. Berger did and proceeded to tell me that the chromosome test had returned and the test results were conclusive. Ammon was positively diagnosed with Down syndrome. I thanked her for all of her hardwork and support on Ammon's behalf and then hung up. I told Summer the results of the chromosome tests and that our little boy did in fact have Down syndrome. She started to cry.

Contrary to the tears of sadness that many would suspect, these were tears of joy and marvel at the flash of understanding that unfolded so clearly before her eyes. Summer would have me emphasize that this was not a vision, a revelation, or a dream, but rather a feeling and an understanding wherein she understood the following. She immediately had an image of Coleson and Ammon in the preexistence with Coleson's arm around Ammon,(I always picture them being somewhere in their late teens, standing by themselves looking over the vastness of God's creations). They were the best of friends, they were brothers. They had just learned to some extent the condition that Ammon would be in when he would come to join our family. Ammon would come a little early, and it would take a miracle to ensure he would stay. Mingled with great anticipation, I suspect there were also some concerns in both of their minds about their upcoming mortal experiences. Then in a moment of brotherly love and resolution, Coleson turns to Ammon and quietly says, "I'll go first." He emotionally continues, "I'll be your big brother, and I will prepare the way for you...I will take care of you." The thought ends and we are left to ponder on the incredible significance of the whole event.

I've always felt that Coleson was a good boy, but I never understood as fully as I do now how good he really was, and is expected to be. I always get a little emotional when I think of this experience. Whenever I'm feeling a little down, stressed out, or upset with someone I think of this experience and am filled with feelings of love, forgiveness, and gratitude. Then I always remember the scriptural story of Another. There was Another who loved each of us with such intensity and purity that the Father chose Him to fulfill the great Plan and be a Savior to us all. And now I can more easily picture a private comforting moment that He spent with each of us, in which He would tenderly and quietly say, "I'll be your big Brother, and I will prepare the way for you...I will take care of you."