Fun in California

In March we were able to get away from the cold weather for two weeks and visit Maga and Paki (grandma and grandpa). Coleson had so much fun. He had a camp out in the living room with Paki, including fishing the next morning at Cameron Park Lake. When he came back he made sure we knew he caught "zero" fish. We went to Fairytale town one day to see all the nursery rhymes in real life. Brian surprised us and came out for Easter weekend. Coleson and Ammon had a deluxe "Cars" night while we went out. They got to watch the cars movie while sitting in their own cars and eating cars treats. It was the perfect break we all needed.

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.

Up the Stairs and Body Beautiful Program...

One of my teams at work is currently having a weight loss challenge. Supposedly my current “fully clothed with no shoes on” weight of 193 is about 10 pounds higher than my ideal weight (don’t worry, there will never be any “before” and “after” pictures posted to this blog, or any other blog for that matter). In order to win the challenge, or at least not have to pay any money to anyone, I simply need to meet my weight loss goal (there will be an overall winner based on percentage weight decrease, but they only receive winnings from those people that don’t meet their goal). Considering it is busy season and our opportunity to do anything besides work is pretty much zero, I’ve inspired the team to join me in climbing the stairs twice a day. Considering we are on the 16th floor this has turned out to be a phenomenal workout in a fairly short period of time. We have a couple of “young pups” on the team that are fresh out of college and still in pristine shape. I know my limitations and most of my coworkers limitations, so the first few times we climbed the stairs my mantra for myself and the older (i.e, out of shape) team members was simply “slow and steady.” We enjoyed a great deal of satisfaction to see the young ones quickly disappear up the stairs only to meet them on the 16th floor nauseous, beet red, and slumped against the wall (our condition wasn’t far behind them, but it was very gratifying to see the young ones humbled). Now that we have been climbing stairs for several weeks the climbs are easier, but still grueling. We try to mix it up by increasing the speed, doing two stairs at a time, and never touching the handrails. However, today at lunch while we were all putting down some cake and contemplating another piece, I came to quite the epiphany concerning this whole “body beautiful” program. Fortunately for me, my metabolism is such that I haven’t gained any weight in about 4 years, despite the out of town meals and minimal consistent exercise (I expect a lot of hate mail for even making that comment). So, it’s not so much that I need to lose weight when I can very easily maintain my current weight; instead all I need to ensure is the people on my team simply gain weight or at least maintain their current “larger” status (that’s a pretty negative thought). Don’t worry though, I’m still doing the stairs twice a day and encouraging my team members to join me. However, now my mantra as we climb the stairs has an out of breathe saying tagged on the end of it, “slow and steady, slow and steady; I look good when you look big.” I’ll keep you posted on how the whole body beautiful program shakes out.

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.

It's a ..... girl--well on the way

Today I went to the perinatologist to get a thorough ultra sound. Everything looks perfect. The baby is right on schedule-19 weeks- and the best news, it's a girl-for sure. Everything was checked twice just to make sure. So my back pain is explained and hopefully we can have a full term, healthy baby! The due date is between July 7-10. Brian was so excited when he heard the news at work that he shouted in his office, with the door closed, but he was still heard throughout the building. Coleson guessed it was a girl before I went, so when I told him it was a girl he said a quiet "Yes" and back to playing with play dough. He already knew so it wasn't a big deal he told me afterward. Ammon laughed everytime we said "baby", so I think he's excited too. I am so grateful to hear the baby is healthy and am so excited for a girl.