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

Jazz Bear and Coleson...

Coleson and I went to the Jazz game on Saturday night and Coleson's dreams came true bigger and better than any of us ever dreamed. To preface, you need to understand Coleson's love for the Jazz Bear. There are many nights when Coleson will run around the house with a shirt stuck on the top of his head, yelling the he is the Jazz Bear (the Jazz Bear wears a headband). To Coleson, the Jazz Bear is not only real, but is one of his friends.

It was moderately cold outside, so Coleson was dressed in his favorite basketball shirt, hooded sweatshirt, Raiders snow hat (courtesy of "Paki" Steve), and carried his Jazz Bear lunch box and "I Love Jazz Bear" sign that Summer had helped Coleson make. At the last minute I decided to bring the camera just in case we needed it for something special. We parked at my work so we could ride Trax over to the game (only about a two block ride, but well worth the ride). Trax is our light transit and Coleson loves to ride the train. We arrived at the Delta Center, and Coleson could hardly contain his excitement, with lunch box, sign, and ticket in hand we were almost running to the front doors. Coleson and I got wanded over by security, then Coleson gave his ticket to the ticket man (Coleson has been talking about showing his ticket to the ticket man ever since we found out we were going to the game). Once inside, we headed right for our seats. We had some sweet seats. Section 6, row 5, seats 15 and 16, right next to the aisle, right down close to the court. We arrived at the game plenty early and we saw the Jazz and Mavericks warm up. It was awesome to be that close, you could actually see the sweat on the foreheads of the players. We were sitting with two of my friends from work, whom Coleson just loves, Harmer Dog and his wife Cassie. Coleson was cheering most of the time, he was really big on the "D-fense" cheer. Nearly the whole game Coleson was standing on his chair with his arm around my shoulder, I was a very proud Dad to say the least. At half time we went and got hot dogs, chips, and drinks. Cassie asked Coleson if would be able to eat his whole hotdog. It's almost like he just looked at her and said semi-sarcastically, "Please...apparently you don't know me and hotdogs." He finished his about the same time I finished mine. So we are having a great time at the Jazz game, we are sitting with Harmer Dog, we've had hot dogs and popcorn, and Coleson and I are finally doing something awesome together, just the two of us. If the night ended right here it would have been perfect, I know I didn't think things could get any better.

Suddenly the Jazz Bear races up the stairs right next to us to do something silly to a fan 10 or so rows above us. I ask Coleson if he wants to say Hi to the Jazz Bear and he walks out to the aisle holding his "I Love Jazz Bear" sign. The Jazz Bear starts coming back down the aisle, sees Coleson, gets all surprised, kicks his legs out and sits right down on the steps. Coleson is immovable with joy. The Jazz Bear gets up and comes down to Coleson to give him a high five. I'm fumbling with the camera trying to get a picture of the Jazz Bear and Coleson. The Jazz Bear does not appear entirely pleased with my picture taking abilities and finally picks up Coleson and poses for a good picture. Coleson is clearly in heaven and at a total loss for words, just all smiles. The Jazz Bear puts Coleson down, gives him a thumbs up and bounds down the stairs. Everyone around us is cheering for Coleson and the Jazz Bear.

Later the Jazz Dancers come running up the aisle passing out mini Jazz balls. Coleson again heads out to the aisle, uses his incredible charm, and immediately scores a mini Jazz ball from one of the dancers. "All right," I'm thinking, "we've had pictures with the Jazz Bear, we've got a mini Jazz ball, we are good to go, it can't get any better."

A timeout is called and everyone is sitting in their chairs waiting for the game to resume. I notice the Jazz Bear is about halfway across the court and he appears to be heading our way. He’s carrying a full size basketball, with his picture on it, it's an official Jazz Bear basketball. He stops at the bottom of our aisle and starts looking around. "He's gotta be looking for Coleson," I think. I pick Coleson up and stand up. The Jazz Bear sees us and points right at Coleson. He bounds up the stairs, stops in front of Coleson, and extends the basketball right into his arms. Coleson is in awe once again, and I hold the ball up against his chest so it doesn't fall. The Jazz Bear gives Coleson another thumbs up and heads back down the stairs. Mission Accomplished! I realize that everyone around us is cheering. They were cheering for Coleson. Not to sound to cheesy, but I almost get a little choked up here. I just can't believe it. We'd been watching the Jazz Bear the entire game, getting pictures with other kids, playing pranks on people, doing dunks, etc. Not once did he return to bring a full size Jazz Bear ball. We were just so happy for Coleson. Coleson has been talking about and holding that ball tight ever since. Now Coleson says when he grows up, in addition to being a snowboarder and football player, he has now added basketball player to the list.

On our way out, I ask Coleson if he wants to send the Jazz Bear a letter. Coleson replies that he wants to send a letter that says thank you, include a picture that he has drawn, and include a picture of him and the Jazz Bear. The night was memorable in every way, and I’m so glad that for once in what seems like a long time, I was there to share it with him.

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.