Ammon's Old Walking Friend...

Several years ago we donated Ammon’s first gait trainer to his former preschool class. A gait trainer is a type of medical equipment that supports a child in a standing position and allows them to focus on walking, without the fear of falling. A gait trainer and similar equipment can easily cost thousands of dollars, and Ammon’s was no different. Reality is that specialized equipment, almost unique and one-of-a-kind, tends to be exceptionally expensive. Ammon’s wheelchair alone costs well in excess the amount we paid for our SUV, and it doesn’t even come with radio, AC, or heated seats. 

In our neighborhood is a family with a beautiful little girl in need of a gait trainer or similar physical development equipment. This past week, we thought we would inquire after Ammon’s old gait trainer and see if we could possibly get it back to give to this family. Fortunately, Ammon’s old preschool class is in the same school as his current elementary class, with the classrooms right across the hall from each other. 

Upon walking in Ammon’s current elementary class this week, and with the gait trainer on her mind, Summer thought she recognized it sitting next to the wall with some of the other specialized and unique equipment. It looked older, it looked used. Then Summer saw across one of the bars Ammon’s name that she had painted on there long before. The letters were worn, faded, and scratched after the ongoing years of use, but there was no mistaking Ammon’s name. This was his old walking friend. 

A strong mix of emotions poured over Summer, similar to what I felt when she told me about seeing the gait trainer. Before the cancer treatments and seizures put on hold so many of Ammon’s physical abilities, there are cherished memories of Ammon exerting all his strength simply to walk on the sidewalk, two houses down and two houses back home. These almost daily walks were physically exhausting for Ammon. He would lean forward as much as the gait trainer allowed, and then with virtually every muscle in his little body (arms flexed, neck contracting, stomach tight, and legs pumping), Ammon would will his way forward, and he would walk. 

Why put our son through so much struggle, effort, and apparent discomfort? Why put any child through this? Here’s why.

As Ammon would take each hard fought step, as he would lean forward as far as he could, as he literally walked down the sidewalk on the tips of toes, his face shone bright. With mouth wide open and eyes alert, he would smile with each accomplished step and each word of encouragement. His radiant happiness and satisfaction were apparent as his occasional joyful shout-outs conveyed, “Look Mom, look! I can do it! I can do it!” This is why Ammon would frequently get so excited when it was time to be with his friend the gait trainer. This is why Ammon’s name was proudly painted across one of the bars. In a day now past (and with hope to return again), Ammon’s gait trainer was not just another piece of extremely expensive equipment, it was part of Ammon, a part that allowed him, if only briefly, to be just like every other kid, to be free.

As Summer looked at Ammon’s old walking friend, one of the classroom aide’s had wheeled a young new class member over and started the process of moving and securing him into the gait trainer. “That’s Ammon’s gait trainer,” Summer briefly thought, “we need it back, we need it for a friend in our neighborhood.” As quickly as the thought came, it left, as Summer watched the little boy, barely 5 years old, finish getting buckled in and ready to go. This small boy had recently graduated from the pre-school class across the hall, and now was a proud kindergartner with all the other elementary age children in Ammon’s class. It appeared that Ammon’s gait trainer had also graduated, and followed this young boy on new learning adventures. Adventures that neither could experience without the other; freedom that could only be discovered together. Ammon’s gift was right where it was always meant to be. With awe, Summer watched as this sweet little boy with focused effort leaned forward as far as the gait trainer would allow, and with all his strength and great exertion, he began to walk. And his face shone bright. 

For a minute or two Summer watched the young boy walk through the classroom, with joy spread all across his face. Ammon’s painted name on the bar of the gait trainer likely received a few more scratches that day. The letters spelling Ammon’s name might not be immediately discernible for those not knowing the history of this particular gait trainer. But for us, it has become a blessing to realize that Ammon’s old walking friend was now helping this little boy experience the joy of a simple walk. Considering how much this gait trainer had become a part of Ammon’s life and even an extension of Ammon himself, in many regards it was rewarding to witness Ammon, with the strong arms and sure support of a gait trainer, be the one helping so many others learn to walk.

Back to School

Brynn started Kindergarden in Mrs. Larsen's and Mrs.Chen's Chinese class. I had mixed emotions letting her go.  It's hard for me to see her grow up.  Brynn is my good helper at home and someone to laugh with throughout the day.

These are our fun neighbors, whom Brynn walks with to school!

Coleson is in 5th grade with Mrs.Brown.  He really enjoys his class so far.
Ammon got to go back to school after almost 2 years off.  Last year he only went a handful of days.  His teachers are so good and give him the one on one attention he needs.

July

In July we enjoyed pool time at Seven Peaks with cousins.


We did squeeze in another trip to Northern California.  We tried the unusual flavors at the Jelly Belly Factory.

We went to San Francisco and had Boudin's sourdough bread and clam chowder.

 We really liked the Golden Gate Park Science Museum.  This is a poisonous dart frog, in a cage. There were large spiders outside of cages that made us a little nervous.

 Brynn had read up on her fairy tales so she was prepared for Fairytale Town.

We didn't see the old woman in the shoe, but we did slide down it.

One of the highlights was Brynn's Lemonade stand, a fun gift from her cousin Jayna.  I guess they aren't very common in Cameron Park anymore, so the kids got some nice tips and earned $37, we were impressed.  

 
We love Maga and Paki's house.

My favorite was going to the temple with my grandparents!

June

We had a great summer!  First we went to San Diego to enjoy the beach, cousins, food, zoos, and Sea World!

 Brynn said she wanted to go on this ride and came out crying.  You couldn't even see her on the picture screen because she was hiding behind Brian.

 Dorian, our cousin, pretty much sums up our beach trips...too cold..Except the last few hours of our 7 day trip, the sun finally came out.  So we unpacked the suits and jumped in.

 One thing that I had not even thought of was wheel chair seating at the shows.  Sea World does an awesome job at making everything wheel chair friend;y.  Ammon loved all the big fish tanks.

 We loved all the touching, up close areas.

 At the San Diego Safari Park, we had fun feeding the lorikeets.  This was also towards the end of the day when Brynn decided to lay on the ground and scream,"I don't want to go".

 Coleson did awesome playing his favorite, March of the Lions for his piano recital.

 Brynn had a fun mermaid birthday swimming party!

One of our favorite city events is the children's parade.  Coleson did a great job playing the ukulele for Brynn to dance to.

May Performances

Coleson had another great school year with a fun ukulele perfomance.

Brynn finished her dance class with a cute show.
Ammon got to show off his bowling skills with his school class and a little help from Brynn.

April

We made it through the rest of winter and spring!  Ammon is doing better, but has been having some congestion/ breathing issues that don't seem cold related.  I have stayed busy suctioning!  I visited several doctors last week and his pulmonologist thinks maybe his tonsils are bothering him.  On Thursday, I visit the ENT for another opinion.

Here is a brief summary of our spring activities:

Coleson had fun designing his rocket for cub scouts.  He placed 4th.  We are pretty consistent with 4th place in scout events.

Since Ammon has not been very well this spring, I have not been able to go to church very often.  Brian goes to early morning meetings, so getting the kids to church sometimes poses a problem.  One morning Coleson said don't worry about it mom, and ran to church all by himself.  I thought it was so sweet that I took a picture of his foot prints to remember.

 For Easter, Coleson got glasses.  He can see at school now!  This was a moment where Coleson's needs got placed behind Ammon's issues.  It wasn't until Ammon was in the hospital that I realized along with grandma's asking, that he could not see the board at school.  I think he looks very handsome.  I'm glad they make cool glasses for kids.

Brynn insisted on being a fairy for the egg hunt at Grandpa Cheney's house.

Cute kids on Easter!

 Brian took Coleson and Brynn to the Firebird Symphony with the Hopekids group.  They loved it.

 Brynn went to the community Princess Academy and had a fun spa treatment,

 We enjoyed ice skating with Ammon!

Time to brag about my awesome husband.  For Mother's day, Brian came up with this cute bowl of love notes without any help from pinterest or blogs!  I was treated to breakfast in bed with yummy crepes and then fresh lemonade for dinner!

I was looking for Brynn one day, when she popped open the dryer drawer and had found "someplace warm"!

She loves her dance class!

A few months ago, my brother Ryan and his wife Jill, adopted a baby boy, Jayden.  We are so happy for them and he is the cutest baby.  We are excited to have another cousin!

"This is a Good Thing..."

We received the best news yesterday, and we are hopeful it is the best answer for Ammon.  Yesterday was a visit to the clinic at Primary’s for a ‘hospital chemo day’ (we give Ammon chemo at home on a regular basis, but hospital chemo days are always more intensive).  Hospital chemo days generally turn into a chemo week and sometimes weeks, with Ammon finally starting to feel good again the week before another hospital chemo day arrives.  Ammon also received a lumbar poke, which requires anesthesia and is usually a more intensive experience than the norm.  Over a year and a half in, and still I sometimes find it difficult to refer to chemo and the cancer process as the norm; it’s not like you get used to seeing the pain and discomfort Ammon experiences and endures, but it’s more just knowing what is to come. 

Ammon had a good day yesterday, and while Summer was waiting with him for the lumbar poke, Dr. Afifi shared some important news with Summer. Dr. Afifi has been Ammon’s lead oncologist since Ammon’s diagnosis, while a series of other exceptional doctors, such as Dr. Sato, have also provided much appreciated love and service on Ammon’s behalf throughout.  It’s really been a team effort by a large portion of the pediatric oncology group, and each doctor involved has always taken a special interest in Ammon.  It’s clear that they have grown to love Ammon in many of the same ways we do, and Ammon returns the love and attention in his own personal ways.  With Ammon not being able to talk in the same way you and I do, it’s interesting to witness that sometimes the spirit and character of an individual far outshine the words that might just get in the way. 

To preface the news that Dr. Afifi shared, it’s important to know that once again I was out of town for a brief conference in Vegas.  On any day that is a hospital chemo day, Summer and I ensure that we connect frequently through calls or texting.  I received a call from Summer while riding on an airport shuttle to the rental car building.  I was sitting at the back of the shuttle, and if you’ve ever sat in that spot you know that the engine is right behind you and you can barely hear your own thoughts let alone a fuzzy cell phone connection. With the sounds and images of the airport flying by, Summer tried to give me an update on how Ammon’s chemo treatment was going.  When I asked how everything was going I realized that Summer was crying, and I immediately went into my hyper concerned mode.  After three attempts at explaining, all I could understand was that Dr. Afifi and Dr. Sato had shared critical information about Ammon, and Summer was crying because of what they shared.  I started getting all emotional because I thought some new awful thing was happening to Ammon, one more brick for Ammon to carry: the cancer was back; the treatments weren’t working; something went wrong with the lumbar procedure; and on and on.  Summer had to drop off the call for a minute to talk to one of the doctors and I couldn’t hear anything anyways, so I told her I would call in a minute or two once the shuttle ride was done.   

Here’s a little insight into how Summer and I operate.  We have a routine we’ve developed over Ammon’s life, where if one of us is crying over the phone and it’s regarding Ammon, if it’s a good thing we always start the conversation out by saying “this is a good thing” and then try to get through relaying the story or information through the tears and emotion.  I couldn’t hear Summer say at the beginning that “this is a good thing” and all I understood was there were tears due to a big meeting with Dr. Afifi.  Upon getting off that incredibly noisy shuttle I called Summer back, and finally heard through the tears, “this is a good thing, this is a good thing…”

While sitting in Ammon’s exam room at the clinic, Dr. Afifi relayed to Summer that Ammon had continued to be the topic of discussion and research among the pediatric oncology group, and that Dr. Afifi had reached out to other colleagues regarding Ammon’s treatment and diagnosis.  With Ammon resting on the exam table, Dr. Afifi relayed that they had decided that Ammon would not need to continue chemotherapy beyond December of this year, and they possibly might relieve these treatments as early as November.  That’s almost a whole year earlier than the 3-year cycle Ammon has been experiencing and we had been planning on.  Summer was so overjoyed that Dr. Afifi had to give her a big hug through all the tears.  Ammon understands a lot, he just has difficulty being able to express it.  I don’t know if Ammon understood what Dr. Afifi was sharing, but either way, Ammon continued to lay calmly on the exam table with his trusting eyes looking at his Mom and Dr. Afifi.  We are so grateful for this reprieve that Ammon will experience, and are grateful for the joyful receipt of this particular tender mercy. 

Part of the discussion had among Dr. Afifi, Dr. Sato, and the rest of their colleagues, focused on the risks and benefits Ammon would receive by continuing with chemo beyond December or discontinuing at that point.  The reality is that they were concerned that Ammon might not make it through another winter and flu season if he remained on the chemo regimen.  Chemo saves your life, but also leaves you defenseless to the environment around you.  Life, not just a life free of the pain of the curing chemo, but life itself was the benefit that tipped the scale.  Ammon’s blood counts continue to be great, and the risk that the cancer will return remains low.  Please keep praying for Ammon, and all our other friends going through the cancer process.  Hope is an incredible and divine thing to possess, and we have hope that this decision is right, that it is inspired, and that Ammon will remain healed for a lifetime to come. 

We look forward to ringing the bell at Primary’s come this December!

We are home!

Ammon has slowly been doing better!  On Thursday, I was ready to go home.  He had a good night, he was off all his pain medication and pretty mellow.  He still has to be suctioned regularly and on bipap every few hours, but after a mellow day I thought, I can do this at home.  When I was consulting with the oncologists about Ammon's status, I asked if there was anything else we could do to boost his immune system and try to avoid hospitalization.  They looked at his labs and saw that his immunoglobulin levels were low.  Last fall when he was hospitalized, he received an IVIG transfusion.  It gives you extra immunoglobulin to help your immune system, especially in mucus secretions.  I really feel like that has helped him to stay well, until now.  We decided to give him a transfusion.  The PICU doctors said we could go home, if I felt comfortable keeping up with the same routine, after his transfusion.  Well, when we woke him up to do his first respiratory  treatment, he started crying, especially when they started his IV.  He stayed that way most of the day.  His heart rate elevated and work of breathing increased.  I felt like he was going back to the way he was when we came in.  The resident came in and said sometimes kids can have a reaction to the IVIG.  That's two reactions in a week, not good odds.  However, by 7 o'clock he was pretty much back to normal, but I didn't want to stress his body out and try to bring him home.  I felt defeated, tired, emotional, but I had to remind myself, it has only been a little over a week, he is still doing remarkable and he is still sick.  I had a sweet nurse that told me she would take good care of him, rub his head if he woke up and that I should go to the parent room to get a good night's rest.  I took her up on that and Ammon and I had a good night.  Around noon on Friday I was ready.  Ammon had been doing great until I put him in his wheelchair.  He started crying super hard, which caused him to cough up a lot of stuff, but then his oxygen levels lowered and we had to suction him a few times.  The PICU doctors were giving me the look like "Are you sure you know what you are doing?"  The whole morning I felt like I was being tested.  I made the call of how long he could stay off the bipap, when to suction him, etc.  It's what I do on a daily basis, but when you have trained doctors and nurses watching you, I start second guessing myself.  I knew he would be happier sleeping on his own schedule, being around Coleson and Brynn,  not having temperture checks every two hours.  I don't like the fact that I have to be the "mean" one to suction and move him around to make him cough and stretch.  I made the right call, though.  He is so happy today.  He doesn't seem sickly.  He is able to play with toys and listen to everyone argue about doing chores.  Today I don't mind.  I am happy to be home too.  I am so grateful for those who prayed for us! Thank you mom for flying out to take care of the rest of our family.  Thank you plasma donors (It takes a thousand). Ammon is Home!

Monday

Yesterday Ammon had to prove that he could breathe well without the ventilator.  He did good on his trials, so they took out the tube and turned off the ventilator.  Hooray!  One side effect of being intubated is possibly damaging vocal cords.  I was worried about that since they made about 5 attempts before they finally placed the breathing tube correctly.  He did cry with a horse little voice, which sounds so sad, but I am so grateful.  I don't know what I would do if he couldn't cry to tell me when something is wrong.  He has a lot of mucus in his lungs, so he has to be suctioned frequently.  He is on a bipap machine, but looks so comfortable.  His seizures have been more frequent which haven't allowed him to sleep as soundly or breathe as consistently as normal.  I am hoping those will start diminishing as he gets better.  Today our goal is to cough up all the secretions in his lungs and prove that he is stable.  Thank you for all the thoughts and prayers.  He is doing so much better than I anticipated.  I just love my little boy.

We'll Take It...

Quick update on Ammon.  Since our scare on Wednesday night, Ammon has continued to remain stable most of the time and even make improvement.  When the doctors first intubated Ammon and put in the tube, one of his doctor's said it could be a while before it was removed.  Since this was our first time being intubated we didn't know what "it could be a while" meant.  I asked, does that mean 12 hours, 24 hours?  The doctor responded, "Let me put it this way, it could be a week or two weeks; if it comes out in under a week consider yourself very lucky."  Well, many of you know my thoughts on luck and coincidences.  Miracles have nothing to do with coincidences or luck, they have everything to do with faith and the reality and existence of a loving Heavenly Father coupled with many heartfelt prayers.  During rounds this morning we talked about Ammon possibly having the tube pulled tomorrow (Sunday) morning.  That doesn't mean Ammon is ready to leave the hospital, but it is a still a miracle.  Even if was pulled two weeks from now it would still be a miracle.

It's humbling for me to sit next to Ammon's bed, holding his hand, and to a large extent be able to discern of his strength.  I realize this is a father talking of his son when I say this, but there is a strength in being near Ammon that is real and tangible.  In spite of all the machines, procedures, and medicines that continue to assist Ammon in sustaining his life, he refuses to be broken.  I guess I'm just surprised to be so close to losing him Wednesday night to have him make such significant strides in just a few days.

Ammon has been awake at times over the past few days and we've been able to talk with him and read him stories.  When he's experiencing seizures or other pains we've been able to gently sing a song in his ear and help him to pull through it.  The tube goes right through his vocal cords, so on the few occasions he's been crying there is no sound at all.  The tube is a new experience for him as well, and I can only imagine how odd and uncomfortable it feels to have something in your throat and not be able to swallow it down or cough it up.  In addition to some continuing medications, Ammon's blood counts have dropped a bit and the doctors feel like a transfusion might be in order (we should know by tomorrow). 

Coleson and Brynn are doing well and have had a wonderful time being with friends and family over the past few days.  They have especially enjoyed having Maga in the home.  Coleson read through the previous blog post and has an understanding of what Ammon's experienced, but we generally tried to shield Brynn from some of the more extreme aspects of this experience.  I was surprised yesterday morning when I was at home and Brynn asked if Ammon almost died.  She is a little girl full of compassion for her brother, and frequently shows it through the service she performs.  She's also is a little girl with some very good ears and a capacity to comprehend the gravity of certain situations.  I'm nervous what she's heard Mommy or Daddy say on other occasions and possibly relaying in Primary or pre-school. 

Thank you again to everyone!  As one example among so many, a good friend brought in Tony Burgers last night.  I've never cried over a Tony Burger, let alone any hamburger, so that was a first.  Ammon wants us to express his gratitude as well.  Thank you for being the angels silently pushing at the back of his handcart through the recurring snow and cold.

Here's a picture of Ammon on Thursday morning; about 12 hours of being stable.

Here's another picture from Friday morning.  You can see the improvement.

Ammon Update...

Back among old friends.  Ammon has not been feeling well for the past week and half, with some stomach issues and other items.  The chemo stills makes him feel not the greatest.  On Monday and Tuesday he actually started to look and feel better.  He wasn’t crying hardly at all, we did need to hold him all day, and he actually slept well on both nights, instead of waking and crying every 20 or 30 minutes.  We had turned the corner!  It’s important to remember that an extremely good night for Ammon is only waking up three or four times, which means that we are only up three or four times to change a diaper, refill his food pump, rotate him around, or give him a sleepy hug.  We always hook Ammon up to his oxygen saturation and heart rate monitor at night.  This monitor allows us to sleep.  It tells us if Ammon stops breathing or if we need to turn his oxygen up, it tells us if his heart is beating too low or too high.  It is the watchful guard throughout the sometimes long night. 

Come Wednesday, he woke up in the late morning breathing very hard and with a frequent cough.  Coughing is difficult for Ammon, he really has to put his whole body into it to get a good clearing cough.  By early afternoon the coughing and breathing had become more extreme and Summer was concerned.  A call was made to the cancer clinic at Primary’s and they said to bring Ammon to the ER immediately.  Upon arriving at the ER, Ammon deteriorated quickly from a respiratory perspective.  His secretions had become more excessive and he wasn’t responding well to the respiratory treatments they were applying.  To put it bluntly, things quickly became extreme. 

A decision was made that Ammon needed to be intubated.  This is where they put a tube down your throat and a respirator breathes for you.  Despite the weeks and months Ammon has spent in the hospital over his life, even with dire respiratory illnesses, he’s never been intubated.  This was something new, and it was our first indication that this was different, something new was wrong.  I left work immediately and drove quickly up to Primary’s.

The intubation process did not go well.  It took multiple attempts and Ammon continued to regress.  Once the tube was placed, Ammon stopped deteriorating, but he wasn’t improving either.  He was moved up to the PICU, and when I arrived at his room I counted 15 professionals working on him.  Many of them had worked with Ammon in his previous visits, and many of them know and love him.  He holds a special place in many of their hearts.  Dr. Sato came down from oncology and stayed next to Ammon over the next several hours, monitoring the other professionals and providing important direction.  She didn’t need to do this, it was after her own long rotation was already complete and she was actually on her way home when the call came that Ammon had been admitted.  When she finally left later that night we thanked her for staying with Ammon, and she simply replied, “It’s not a problem, he makes us all feel so happy.”  (When Dr. Sato came by today to see Ammon I made sure to give her a big hug and thanked her again).

Going back to when I first arrived at Ammon’s PICU room, the doctors spent the next hour trying to correct his breathing and other issues.  Ammon’s reactions didn’t make sense to them.  They would apply one procedure or medication with an intended purpose in mind and an unexpected result would occur.  One of Ammon’s doctors simply remarked, “It’s Ammon” as the explanation.  Ammon keeps them on their toes, sometimes causing the procedural book to be thrown out, and (whether it’s stated this way or not) moving forward by faith.  After trying multiple settings and procedures, someone suggested a different approach, and gratefully Ammon started to stabilize.  The lead respiratory therapist kept saying to the PICU doctors, “I really don’t know why it’s working, it shouldn’t be working this way, but let’s keep doing it.” 

After Ammon had been stabilized for an hour or so, Summer and I were assured and felt comfortable we could slip down to the cafeteria for a few minutes to grab a quick dinner.  I think it was around 9 o’clock or so.  After we had purchased our food and made a few phone calls, we were eating and trying to digest everything that occurred so far tonight.  A nurse we didn’t recognize came rushing into the cafeteria and asked if we were Ammon’s parents.  She said she had been sent to get us and we needed to come with her to Ammon’s room immediately.  We left our food, bags, and coats at our table and took the shortcut up to the PICU.  In approaching Ammon’s room, I again counted 15 professionals working around him, but they were moving much faster, there was more commotion, and doctors were talking over each other.  The concern on their faces and in the tones of their voices was immediately apparent, and not reassuring.  I looked at the monitors and saw that Ammon’s heart rate was not normal, and his oxygen sats were in the low 70s, like 70 and 71.  I heard the head PICU doctor asking if the respirator could be turned on any higher, and the lead respiratory therapist responded that it was already on the highest setting, there was no more to give.  I entered Ammon’s room and one of his doctor’s looked up and said, “We put the CPR board under him in case we need to start performing CPR.”  She must have thought I saw the board and knew what it was.  CPR?  What was happening?  “His heart rhythms are not good, we don’t know what’s causing it,” she said.  It’s Ammon being “tricky” again.  They decided to “bag” him, which is a respiratory procedure, and Ammon’s lead nurse, Nicole, said she would manually bag him all night if that’s what he needed (thank you Nicole).  It was amazing to watch hands moving everywhere and professionals working around each other, each seeming to be doing an important task; I really don’t know how they kept everything straight and how so much was getting performed all at the same time.  It was then that I noticed what appeared to be the crash cart (two crash carts actually) just outside Ammon’s room.  I knew what these are for.  If CPR doesn’t work they trying shocking your heart; it’s really the last procedure performed, the last line of defense.  If not for all the doctors and being in the PICU, Ammon might have passed away while we we’re down in the cafeteria. 

Minutes passed slowly and quickly, the doctors were baffled, and the discussions had seemed to take the tone of, “Anyone got any more ideas?”  They decided to try turning down the ventilator machines, continue manually bagging, and hope for the best.  It started to work.  Ammon’s sats rose to the low 80s and he didn’t have additional heart issues.  Was he starting to stabilize?  During this time, Dr. Sato pulled us aside and we had a very difficult discussion.  We’ve never had the DNR discussion.  Summer asked what DNR meant, and unfortunately I knew the answer to this one.  “Honey, it means do not resuscitate…”  Dr. Sato explained that Ammon had been through so much, and sometimes when the body just becomes weaker, with times of improvement followed by another round of gradual decline, that it’s the body’s way of saying, perhaps Ammon’s way of saying, I have fought the good fight.  I didn’t realize till right now how hard that is to write that.

I looked over at Summer, and then looked over at Ammon in his room.  He is such a special son to us.  He is a miracle.  While we we’re speaking with Dr. Sato, Ammon’s sats had continued to recover.  The procedures were working.   Ammon, true to form, was fighting through it.  It was yet another fight he was going to win.  In all of my hospital experiences, and observing other patients, I’ve never seen such strength of spirit be matched, time and time again.  Our response to the DNR discussion was clear.  Sometimes Ammon might need a little help taking the last steps to reach the summit of a new medical challenge, and if that means administering CPR followed by shocking the heart then he will receive that help.  We know it is the right decision for Ammon, should the unfortunate need ever arise again. 

Eventually, Ammon stabilized completely.  He’ll likely be asleep for days at least, if not more than a week.  We could be here for a week or several weeks; Ammon will let us know.  Thank you everyone for all you do for Ammon and our family.  Clearly, Coleson and Brynn have been loved and well cared for in our absence.  To put it simply, we are surrounded by angels.  Perhaps the one request we have is to just keep Ammon in your prayers.  As we gave him a priesthood blessing, it was important for him to know that he is loved, that he does have more to do, and that he will again experience and be able to express joy and happiness.  One other thought.  We have two good friends in our neighborhood that are continuing in their own cancer journeys.  One just started within the last week and the other has been traveling for some time.  Please remember Kathy and Casey in your prayers as well. 

We’ll post more soon.  Thank you.

Happy New Year!

We have had a great New Year.  We made it through Christmas and New Year's Eve with everyone being healthy and able to make it to family parties.  Amazing.    I feel so blessed and grateful when we are well.  There is a huge difference on the days that Ammon feels good.  It's like when your baby sleeps through the night for the first time.  You don't even know what to do the next day because you have energy and time to be normal again.  Ammon even went to school for two days and life seemed so good.  Then everyone got sniffles and coughs, but nothing more severe.  I am hopeful the trend continues the next few days and weeks.  Well here are some pictures to sum up some of the things we did in December.

A few days before Christmas, Ammon got the best present of all... a manila envelope full of get well/ Christmas cards from the Alpine Seminary Students.  They don't even know Ammon.  It truly was an envelope filled with love.  It came at the perfect time.  Ammon had a rough month all the way up to Christmas.

Brynn started dance class a few months ago and had her first recital.  She was so excited to wear make up for the dress rehearsal.

She danced to "The Little Drummer Boy"  (second over from the right)

Brynn has become very fashionable.  This is how she dressed to deliver neighbor treats.  Luckily, little miss mismatched has helped our 4 year olds not be too out of style.

On the Sunday before Christmas, we got to sing for part of the Sacrament program at church and play the bells with another family.

That night we had a Fiji style dinner.

This was Brynn's favorite gift.  She has worn it everyday since, even if it is 10 degrees outside.

 Yes, Santa did bring Coleson Legos again.  He got this spider from his cousins.

At the beginning of December our sister-in-law, Feather, got married to Guillermo. We are so happy for them.  Brynn loved being a flower girl with a sparkly dress.  

We had fun taking cute pictures. 

 Ammon was still being taken care of by the wonderful nurses at Primary Children's hospital that night.  He was well enough, though, to enjoy music therapy that day.  So sweet.