This Tuesday Ammon goes back into the hospital for another important surgery. This Tuesday Ammon will be receiving a G-tube or feeding tube to better help him get the vitamins, nourishment, and liquids that he needs on a daily basis. With his medical conditions it has made it difficult for him to put down alot of food, and especially drink liquids, even thicker liquids. We went to a class on Friday at Primary's to learn how to use the tube, clean it, replace it, etc. Let me tell you, we've done the oxygen, the monitors, and half a dozen other things, but there is something about this tube that is a little more unnerving than all the rest. I mean we are pretty good at all this medical stuff at this point, especially when Ammon came home from the NICU as a baby at about 4 pounds with oxygen, monitors, the works. We are always telling the doctors, "Just let us take him home, we got all this medical stuff covered." But this feels a little different. It is the completely right answer at this point, but it will take some weeks to get comfortable with. We are especially not looking forward to the recovery period for Ammon, it is a very painful process for a couple weeks. It's especially hard because Ammon has been laughing so much over the past week and we are seeing alot more of the real Ammon again. Tonight we had him laughing so hard for over an hour that we had to take breaks so he would have a moment to catch his breathe. Anyhow, it goes without asking at this point, but please keep Ammon in your prayers for the next little while, he's about to have a rough go of it again.
We've had a lot of questions about the Buddy Walk and Buddy 5K. Again, we'd love to have you all there, even those that only know Ammon through this blog (please don't be shy, just come). We'd love to meet you and show great support to Ammon. Please see the post below to sign up online and be one of Ammon's Heroes! Thank you again to everyone, and we can't wait to see you all in two weeks at the Buddy Walk!
Sunday, September 6, 2009
Sunday, August 30, 2009
Get ready for the Buddy Walk
It's time for the annual Buddy Walk. This year the registration or donations are all online. Here's a brief summary of what the Buddy Walk is for. The goal is to promote understanding, acceptance and inclusion of people with Down Syndrome. The money raised goes to the Utah Down Syndrome Foundation. The money is used for special events for the families, to bring them together, for education and research. The event consists of a one mile walk on a sidewalk around a park (these are done nationwide about 275) It gives the community and our family/friends a chance to interact with these wonderful children and celebrate who they are. After the walk there is a carnival for the whole family--Games, bouncy houses, music, face painting,a raffle, and lunch. It really is fun. The event is Saturday Sept.19th at 10:00 (they usually don't start the actual walk until 11:00) at the Centerville Community Park (1350 North 400 West in Centerville, about 15 minutes north of Salt Lake). We would love to have anyone come and be on Ammon's team. This year we are team Ammon's Heroes (I realize I spelled heroes wrong- that's what happens when I do things past 11pm.) We really appreciate all those who have come in the past to support us. There is also a 5K at 8:30am which we will be running in also.
We have our own Ammon page to sign up under. Go to http://www.firstgiving.com/AmmonsHeros
Thanks again for all your prayers and thoughts. Ammon is doing better. He is starting to smile and laugh more-which he wasn't doing for a while. He is still pretty weak though. This week will be a good test with the medication to see if we can get him back to normal.
Monday, August 17, 2009
"I Still Want to Go..."
Maga, this is a "Brian post" so it's going to be long. I thought I should warn you.
Summer and I have talked frequently about this type of stuff over the past year, and I’ve come to the conclusion that more often than not I don’t do a good job communicating these things, especially to friends, family, and other concerned loved ones. I guess I realize that every family has challenges and trials of the physical and emotional sort, and usually they do a great job of just dealing with them and moving on and no one is the wiser. Sometimes when we talk about Ammon we almost always get the response of “Oh, we didn’t know; we had no idea,” and my favorite “Wow…” But more often than not we are still hesitant to share about the challenges and daily struggles, we always want to be very clear that on the scale of life Ammon has been and will continue to be one of the greatest miracles and blessings to our family.
On Thursday this past week Ammon had another appointment with a neurologist. The main intent of the appointment was to determine if there was anything discovered during Ammon’s recent MRI that would explain the regression in his abilities and interactions over the past year. The neurologist essentially said that it was obvious that Ammon’s brain was badly damaged at the time he was born, and that area of his brain has healed and kind of scabbed over, for lack of a better description. There was nothing new there that would be causing his developmental regression. The doctor recommended that an EEG be performed, which in technical terms means you hook up over a dozen little probe thingys to Ammon’s head and they work their magic. After hooking up all the probes, Summer held Ammon in her arms and gently rocked him to sleep, and this is where the revelation came. I need to tell you that when Ammon sleeps he still looks like the most precious innocent angel that he was when he was only a couple weeks old in the NICU. Everything about him is completely at rest, and it’s usually at these times when I have the opportunity to just sit and watch him that I have so much hope for him, and I feel so inspired. I had no idea that while his body and spirit appear to be completely at rest, his beautiful mind is being stretched to its limits.
When Ammon fell asleep in Summer’s arms at the hospital the probes and computers started registering intense seizure activity. Even though his body was completely relaxed, his brain was experiencing consistent seizures the whole time that he slept. Apparently every night when Ammon goes to bed and the rest of us are dreaming and rejuvenating for the next day, his mind is consistently at work in all the wrong ways, in all the damaging ways. When Summer called me at work to tell me about this I was completely caught off guard and my emotions got the better of me. The seizure activity makes it hard to retain and understand short term memories, let alone long term traits and characteristics. How hard it must be for Ammon, to “forget” what it’s like to say Amen before everyone else at the end of a prayer, to “forget” all the silly songs and words that make him smile and laugh out loud, to “forget” how to give shout-outs to Daddy when he comes home and to give him high fives. Finally, we think we have one more piece to the puzzle, we just didn’t know going into this that this piece would be so important and the puzzle would turn out to be so complex. At least we have learned enough at this point to not assume that the puzzle is complete.
Ammon was scheduled to spend the next day and night at the hospital to have a sleep study performed, wherein he would be given seizure medication and then monitored to see if it would work. The neurologist indicated that it is possible to reduce or eliminate the seizure activity, but the process is not without trial and error (we’ll take the trial). Once the seizure activity is overcome, we should be able to start seeing more of our wonderful Ammon again. I think about it though, and our “new” Ammon might not ever be the same as our old Ammon, especially if he’s forgotten. But I know he has the same spirit within him, and the same deep trusting eyes, so we are eager and hopeful to help him rediscover who he really is inside.
I usually work only half days on Fridays, so I came home right before Summer took Ammon to the hospital for his stay. Later that night I brought Coleson and Brynn down to see Mommy and Ammon. Ammon was hooked up and bandaged up. He had gauze bandages all over his head and under his chin with several dozen wires sticking out the top of his bandaged head and running into the monitor. At first glance he reminded me of someone dressed up as a mummy or as Marley from Dicken’s Christmas Carol. Coleson was immediately concerned and inquisitive. Whenever the nurse came Coleson showed his love for his little brother, and would directly ask the nurse, “What are you doing” or “What’s going to happen to him.” After the explanation, he would always follow up with, “Ok, I just don’t want him to cry; don’t you make him cry.” This line of questioning and concern continued throughout the night the whole time Coleson was there. And when Ammon came home on Sunday Coleson was jumping around and ready to throw a party that his little brother was home safely.
The first night appeared to go alright, but the medication was only about 20% effective in reducing and eliminating the seizures, so Ammon stayed Saturday night also. I stayed with Ammon on Saturday night and Sunday morning and we had a good time together for being in the hospital and hooked up to a bungee cord of wires. Summer had told me that the nurses watch him all night, but I didn’t realize how closely. Our nurse pulled a desk in front of our half closed door and sat there all night physically watching Ammon in addition to all his electronic monitors. Her only job was to watch him, and if she left for a brief bathroom break someone else would take her place. It took me a while to fall asleep knowing there was a light on and someone watching from the door, but eventually I gave in to the exhaustion with Ammon and we slept okay throughout the night. The new medication given on Saturday night appeared to do the trick and the doctors let us go home on Sunday morning. We are all hoping and praying that this new treatment will start having the appropriate effect over the months to come (there are many followup visits over the next few months in addition to Ammon’s other appointments).
I just wanted to share one more thought. Sometimes I might be accused of thinking up scenarios in my mind of how or why things happen, only to make me feel better about whatever experience I’m thinking about. In all honesty though, when it comes to Ammon there is often a deep understanding and realness that comes when I think about him and his important place in our family and in the eternities past and to come. I’ve often felt real spiritual assurances that I cannot refute or deny wherein I’ve come to realize that the words and images and pictures I sense and see are not always exactly right or exactly how it happened, but the message is right, the meaning is true (I hope that makes sense, I don’t know how else to describe it). In that light, I don’t know how specific the glimpses are into our mortal lives before we come here, but in the case of Ammon I’ve come to know that he was aware of some of the more unique challenges he would experience. That’s part of the reason why I love this little guy so much and am so amazed by his strong spirit and determination. I can clearly hear him say before his life here, in a comforting and reassuring way to those with him, “I still want to go…it’ll be just fine...my family will always love me...I still want to go...” Ammon has been a treasured gift to our family in many of the same ways the Savior has. And with both of these Gifts, I think our little family will always be just fine.
We'll try to do a better job keeping you posted on Ammon.
Summer and I have talked frequently about this type of stuff over the past year, and I’ve come to the conclusion that more often than not I don’t do a good job communicating these things, especially to friends, family, and other concerned loved ones. I guess I realize that every family has challenges and trials of the physical and emotional sort, and usually they do a great job of just dealing with them and moving on and no one is the wiser. Sometimes when we talk about Ammon we almost always get the response of “Oh, we didn’t know; we had no idea,” and my favorite “Wow…” But more often than not we are still hesitant to share about the challenges and daily struggles, we always want to be very clear that on the scale of life Ammon has been and will continue to be one of the greatest miracles and blessings to our family.
On Thursday this past week Ammon had another appointment with a neurologist. The main intent of the appointment was to determine if there was anything discovered during Ammon’s recent MRI that would explain the regression in his abilities and interactions over the past year. The neurologist essentially said that it was obvious that Ammon’s brain was badly damaged at the time he was born, and that area of his brain has healed and kind of scabbed over, for lack of a better description. There was nothing new there that would be causing his developmental regression. The doctor recommended that an EEG be performed, which in technical terms means you hook up over a dozen little probe thingys to Ammon’s head and they work their magic. After hooking up all the probes, Summer held Ammon in her arms and gently rocked him to sleep, and this is where the revelation came. I need to tell you that when Ammon sleeps he still looks like the most precious innocent angel that he was when he was only a couple weeks old in the NICU. Everything about him is completely at rest, and it’s usually at these times when I have the opportunity to just sit and watch him that I have so much hope for him, and I feel so inspired. I had no idea that while his body and spirit appear to be completely at rest, his beautiful mind is being stretched to its limits.
When Ammon fell asleep in Summer’s arms at the hospital the probes and computers started registering intense seizure activity. Even though his body was completely relaxed, his brain was experiencing consistent seizures the whole time that he slept. Apparently every night when Ammon goes to bed and the rest of us are dreaming and rejuvenating for the next day, his mind is consistently at work in all the wrong ways, in all the damaging ways. When Summer called me at work to tell me about this I was completely caught off guard and my emotions got the better of me. The seizure activity makes it hard to retain and understand short term memories, let alone long term traits and characteristics. How hard it must be for Ammon, to “forget” what it’s like to say Amen before everyone else at the end of a prayer, to “forget” all the silly songs and words that make him smile and laugh out loud, to “forget” how to give shout-outs to Daddy when he comes home and to give him high fives. Finally, we think we have one more piece to the puzzle, we just didn’t know going into this that this piece would be so important and the puzzle would turn out to be so complex. At least we have learned enough at this point to not assume that the puzzle is complete.
Ammon was scheduled to spend the next day and night at the hospital to have a sleep study performed, wherein he would be given seizure medication and then monitored to see if it would work. The neurologist indicated that it is possible to reduce or eliminate the seizure activity, but the process is not without trial and error (we’ll take the trial). Once the seizure activity is overcome, we should be able to start seeing more of our wonderful Ammon again. I think about it though, and our “new” Ammon might not ever be the same as our old Ammon, especially if he’s forgotten. But I know he has the same spirit within him, and the same deep trusting eyes, so we are eager and hopeful to help him rediscover who he really is inside.
I usually work only half days on Fridays, so I came home right before Summer took Ammon to the hospital for his stay. Later that night I brought Coleson and Brynn down to see Mommy and Ammon. Ammon was hooked up and bandaged up. He had gauze bandages all over his head and under his chin with several dozen wires sticking out the top of his bandaged head and running into the monitor. At first glance he reminded me of someone dressed up as a mummy or as Marley from Dicken’s Christmas Carol. Coleson was immediately concerned and inquisitive. Whenever the nurse came Coleson showed his love for his little brother, and would directly ask the nurse, “What are you doing” or “What’s going to happen to him.” After the explanation, he would always follow up with, “Ok, I just don’t want him to cry; don’t you make him cry.” This line of questioning and concern continued throughout the night the whole time Coleson was there. And when Ammon came home on Sunday Coleson was jumping around and ready to throw a party that his little brother was home safely.
The first night appeared to go alright, but the medication was only about 20% effective in reducing and eliminating the seizures, so Ammon stayed Saturday night also. I stayed with Ammon on Saturday night and Sunday morning and we had a good time together for being in the hospital and hooked up to a bungee cord of wires. Summer had told me that the nurses watch him all night, but I didn’t realize how closely. Our nurse pulled a desk in front of our half closed door and sat there all night physically watching Ammon in addition to all his electronic monitors. Her only job was to watch him, and if she left for a brief bathroom break someone else would take her place. It took me a while to fall asleep knowing there was a light on and someone watching from the door, but eventually I gave in to the exhaustion with Ammon and we slept okay throughout the night. The new medication given on Saturday night appeared to do the trick and the doctors let us go home on Sunday morning. We are all hoping and praying that this new treatment will start having the appropriate effect over the months to come (there are many followup visits over the next few months in addition to Ammon’s other appointments).
I just wanted to share one more thought. Sometimes I might be accused of thinking up scenarios in my mind of how or why things happen, only to make me feel better about whatever experience I’m thinking about. In all honesty though, when it comes to Ammon there is often a deep understanding and realness that comes when I think about him and his important place in our family and in the eternities past and to come. I’ve often felt real spiritual assurances that I cannot refute or deny wherein I’ve come to realize that the words and images and pictures I sense and see are not always exactly right or exactly how it happened, but the message is right, the meaning is true (I hope that makes sense, I don’t know how else to describe it). In that light, I don’t know how specific the glimpses are into our mortal lives before we come here, but in the case of Ammon I’ve come to know that he was aware of some of the more unique challenges he would experience. That’s part of the reason why I love this little guy so much and am so amazed by his strong spirit and determination. I can clearly hear him say before his life here, in a comforting and reassuring way to those with him, “I still want to go…it’ll be just fine...my family will always love me...I still want to go...” Ammon has been a treasured gift to our family in many of the same ways the Savior has. And with both of these Gifts, I think our little family will always be just fine.
We'll try to do a better job keeping you posted on Ammon.
Wednesday, August 12, 2009
Coleson's off to first grade
Coleson is a big first grader now! Last week I started getting sad to think about him being gone all day long and it finally came. Coleson started to get worried too. I guess he was just mostly scared of lunch because you are with the big kids and he didn't know how that would work. Well after two days, that is his favorite part of school. He learned the less/faster you eat, the more recess you get, you can trade peach slices for a pickle, and you are supposed to have a treat in your lunch( i guess i didn't know that part) I explained everyone is going to have different things in their lunch and I am not going to put packs of sugar in there. He told me that i was wrong you have to have a dessert-that's just how it is. I guess we could find some snack/treats that aren't pure sugar. So the first day we were going to walk to school together, even though he insisted he could go by himself. He was ready like 45min before school started and kept asking if he could go and I told him we were walking together. I really don't want to be an embarressing mom or anything, but come on it's the first day. (and my parental right to make sure he is safe) I let him go outside to see if any other kids had started walking and then we would go. After seeing the first kid he took off. I was trying to push the stoller and keep up, but i think he was trying to get to school without me. I caught up in the end to take one last picture and then he was gone. I have really enjoyed Coleson's company all these years. It's kind of weird to go to doctor's offices or places without him. Everyone seems a little dissapointed when it's just me. Coleson is definitely the life of the party! He definitely doesn't miss being at home with crying kids. It will be a great break for him. However, today he said a prayer asking if school could be shorter-maybe he secretly misses me.
Sunday, August 2, 2009
Want s'more?
Over the 24th we went camping in Big Cottonwood canyon. We had a great time. I wasn't sure how it would work with Brynn-in between crawling and walking- and having to hold Ammon for a long time. They actually played in the pack-n-play when we needed a break and the weather was perfect for staying outside. Coleson had fun exploring the "dead Tiki room tree" and crossing the river (stream) with his cousins. We all ate tons of smores, but I think Ammon won for the most marshmallows eaten. I guess I let him have too many because he woke up in the middle of the night and wouldn't go back to sleep. So Brian and I took turns listening to him be awake --you can't really rock him to sleep or do much when you are in a tent to soothe someone. The next day we hiked Donut Falls and enjoyed the beautiful scenery. It was just so nice to get away from life for a day.
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