Day 3 - A Better Day

Day three was a much better day. Ryan has been much more awake today and his sense of humor is shining through. I spent the night at the Ronald McDonald House with Sydney and I received a text from Ryan first thing with a copy of the hospital menu. He took a picture of the 'meatloaf' item and told me that he was going to order that for me. I hate meatloaf. He gave me a good laugh.

I arrived at the hospital close to 10am. Brett wanted me to come as soon as I could as the doctors typically round in the morning and come by and brief the parents. Today they didn't come until after noon. Brett was already gone by then.

We got Ryan out of bed today. He received a sponge bath and got clean sheets. He was so gracious to the tech giving him the bath and I was so proud of him. He kept thanking her. I was so proud of him. He is such a sweet soul. I continued to take pictures as they were moving him. I think the nurses may have thought I was a bit crazy but hey- I need to document this stuff. One of Ryan's favorite pictures from when he was a baby is the one we were able to get with his central line dressing off and the line coming out of his chest. We now have a picture of him with a larger tube coming out of his side. He will appreciate it one day.

If you look closely you can see the lines on Ryan's back. They almost look like stretch marks. These wrinkles are from his bedding that we were unable to get smoothed out the day before. The two incisions on his back are where the surgeon accessed his lungs.

Sitting up in the chair. He looks a bit like death warmed over.

Dad's turn to  feed breakfast

This shower cap was pretty snazzy. It is wet on the inside. You place it over the patients head and massage.

Clean hair

The chest tube.

As Sydney and I were walking out of the hospital for the night, she pointed out this painting and said "Look mom, it is doing the whip"

Here is the update I sent to the family for day 3

Update Day 3 - Today was a much better day. Ryan was much more awake today and his pain was managed for most of the day - all good signs. Around noon we were able to get him out of his bed. He had a sponge bath from an amazing tech who clearly loves those she serves. I was so impressed with her professionalism. She treated Ry with so much respect and I appreciated it so much. Ry sat in a chair for close to an hour. We thought he was only going to sit in it for 10 minutes, but the nurses were very busy today and it took them quite a while to return to the room. By the time we got Ry back in to the bed his pain began to rise. It took some time to get relief meds. My Public Service Announcement for today is this - bring the med when you say you are bringing the med. We were told he could have more medication at 2:30. Straight up at 2:30 we pressed the call button. The nurse came in the room, looked at his chart, and said she would be right back with his medication. It was another 1/2 hour before she returned with the medicine. I think he slides into delirium when he is in such pain and does his best to just sleep until the relief can come. Ryan was able to eat twice today. He had spaghetti noodles with butter both times. He didn't want to order food because he said he felt so bad that he was wasting so much. I convinced him to order anyway. We ordered a 1/2 serving and he ate the entire thing. Hooray for bland pasta with butter - one of his favorite things. He ate the same food for dinner. Ry was able to be weaned from the supplemental oxygen. His O2 stats are staying steady most of the time.We saw our pulmonary doc today for the first time. I love her. When I spend time with her it is confirmed to me why we are here. We were given visuals of the cysts that were removed from Ryan's lungs - 1 small peach/lacrosse ball and 3 cherries. Ry still has a chest tube and it is still leaking air, which means his lung isn't completely healed. They will turn off the suction tomorrow and test to see if his lung will seal without the constant suction. There is a possibility that they will be able to remove the tube tomorrow, but we won't know that until they decide to do a chest X-Ray. The Chest X-Ray won't happen until there is less drainage and the bubbling in his chest tube output slows a bit more. Today's miracle - my children. Sydney and I ate dinner at the Ronald McDonald Housetonight. There are groups that come in and bring meals for the residents there. As we sat there I felt so overwhelmed with gratitude for my kids. They both have chronic health conditions, but they pale in comparison to that of so many residents at the house. They are also alive despite the challenges they have had with their health that could have easily taken them both. Heavenly Father has truly blessed my family.

Update Day 3 - Today was a much better day. Ryan was much more awake today and his pain was managed for most of the day - all good signs. Around noon we were able to get him out of his bed. He had a sponge bath from an amazing tech who clearly loves those she serves. I was so impressed with her professionalism. She treated Ry with so much respect and I appreciated it so much. Ry sat in a chair for close to an hour. We thought he was only going to sit in it for 10 minutes, but the nurses were very busy today and it took them quite a while to return to the room. By the time we got Ry back in to the bed his pain began to rise. It took some time to get relief meds. My Public Service Announcement for today is this - bring the med when you say you are bringing the med. We were told he could have more medication at 2:30. Straight up at 2:30 we pressed the call button. The nurse came in the room, looked at his chart, and said she would be right back with his medication. It was another 1/2 hour before she returned with the medicine. I think he slides into delirium when he is in such pain and does his best to just sleep until the relief can come.

Ryan was able to eat twice today. He had spaghetti noodles with butter both times. He didn't want to order food because he said he felt so bad that he was wasting so much. I convinced him to order anyway. We ordered a 1/2 serving and he ate the entire thing. Hooray for bland pasta with butter - one of his favorite things. He ate the same food for dinner.

Ry was able to be weaned from the supplemental oxygen. His O2 stats are staying steady most of the time.We saw our pulmonary doc today for the first time. I love her. When I spend time with her it is confirmed to me why we are here. We were given visuals of the cysts that were removed from Ryan's lungs - 1 small peach/lacrosse ball and 3 cherries.

Ry still has a chest tube and it is still leaking air, which means his lung isn't completely healed. They will turn off the suction tomorrow and test to see if his lung will seal without the constant suction. There is a possibility that they will be able to remove the tube tomorrow, but we won't know that until they decide to do a chest X-Ray. The Chest X-Ray won't happen until there is less drainage and the bubbling in his chest tube output slows a bit more.

Today's miracle - my children. Sydney and I ate dinner at the Ronald McDonald Housetonight. There are groups that come in and bring meals for the residents there. As we sat there I felt so overwhelmed with gratitude for my kids. They both have chronic health conditions, but they pale in comparison to that of so many residents at the house. They are also alive despite the challenges they have had with their health that could have easily taken them both. Heavenly Father has truly blessed my family.

Day Two - Oh the Pain

Whenever you are in a hospital, the night shift is the worst. We had an amazing nurse named Rico. He was a Godsend. He was so gentle with Ryan and was so quiet and respectful when he entered the room. He knew right away that Ryan needed fluid and he made sure he received it ASAP. The only problem with Rico was that he couldn't hear me unless he was looking straight at me. So, we spent the night asking and answering each other questions - none of which were answered the way I had asked, or how he had because -- he couldn't hear me. That's ok. He took great care of my boy.

By 4:30 am I had finally slipped in to a deep sleep. The couch/bed here is not terrible and when I could fall asleep I did sleep quite well. At 5:45am I got a terrible wake up call. I didn't hear the door open, but I heard a very.loud GOOD MORNING! It startled me and I was ready to jump off the couch and push whoever it was out of the room. I turned over and tried to decipher who it was. She was young and was crouched on the ground looking at the drainage from Ryan's chest tube. I'm sure I sounded amazing when I asked if she was a doctor. She cheerfully told me that she was one of the residents. Ah - of course. She hadn't yet learned the proper etiquette of entering a room at 5:45AM! She wanted to listen to Ryan and then she wanted to roll him over so she could listen to his back. UH - NO! Sorry. Not sure who you are. Don't really care. And you are NOT touching him. If the doctors who come in say he can lay there because of pain, you are not moving him. So, in my not so nice/nice voice I told her that she may not touch him. Nobody had tried turning him. Nobody cared that he hadn't moved, and nobody had cared to listen to his back. She left the room and told me that she would return later with the rest of the General surgery team.

We met several doctors throughout the day. We were told that today would be the worst as far as pain went. It was hard to imagine that the pain would be harder than what he had experienced the day before. It wasn't long before I didn't have to imagine it. The decision was made to space Ryan's meds out. I don't know who had made that decision. The only group who had been to see us at that point was the General surgery team. I wrote the following update for our family and friends.

Update Day 2 - Today was a rough day for most of the day. Pain management kind of went down the tube. There was a disconnect somewhere and the orders went from allowing the big guns every three hours to every 6 hours. They tried transitioning to oral meds and he wasn't ready for that either. At some point today he couldn't receive anything to offset the pain because A - the orders had changed and B - the med he could receive contained the same ingredients as the oral meds so we were deadlocked. No Bueno. When he is in the most pain his respiratory stats go up significantly. When he is relaxed and not in pain the number hangs out around 15-18. During his highest pain today his respiratory numbers were in the 40s. He cried out at one point and exclaimed "by the time they get here with this damn medication my heavy duty meds will be here" His pain had hit a new threshold and it seemed there was no end in sight. Poor guy. He was right. It would be another hour and a half before the meds arrived. 


By 2pm he was resting soundly. He is still on supplemental oxygen and will continue to be until he can take deeper breaths. Those deep breaths will come when his pain is under control. I left the hospital for a bit and when I returned around 3:45 his eyes were open and he was actually talking to people. That was the first I had seen of his eyes since before surgery. 

Tonight he was able to tolerate jello and vanilla ice cream. He still doesn't move much, but we are seeing progress. 

I've decided I need to write a medical public service announcement book. My first item of business and rule number one would be this - DO NOT march in to a room at 5:45 in the morning and yell good morning to patients and their parents. It's not good practice. I promise. 

We experienced two tangible miracles today. 1 - They found a cocktail of Medicine that seems to be keeping the pain at bay. And 2 - The Ronald McDonald house!! Thank you again for your prayers. How can I ever repay you? Our Heavenly Father heard our prayers.

Day One - Post-Op

I was escorted to the family waiting room to wait with Brett and Sydney. The surgeon came to meet with us and told us that he expected that from start to finish - falling asleep, procedure, waking up - would be approximately 2 hours. I think it was close to an hour and half by the time he returned.

They have a 'consultation' room in the waiting area. The surgeon entered the room as well as Ryan's Bone Marrow Dr that we have seen for the past 15 years. The surgery went as planned. They were surprised at the size of the cyst. They said there were also 3 smaller cysts that they removed as well. The surgeon made a circle with his hands to show how big the cyst was and said it was about 6cm in diameter. The size would later be described as the size of a small peach/lacrosse ball, and the three smaller cysts the size of small cherries. As we were leaving our consultation we were told that it would likely be an hour and a half before Ry began to wake up enough for us to see him.

I lost track of time. Ryan was alive and peace surrounded me. I was overwhelmed by the blessings we had received. As we were waiting for them to call us back we were watching the local news. The mountain pass that we had driven just 12 hours prior was now covered with 1-2 feet of snow. Our miracles were already beginning to happen.

It was decided early on that I would be the parent to go back with Ryan. When he had his last surgery, Brett struggled and ended up passing out and ultimately throwing up a couple of times. We needed someone who could see the gore without being queasy. That person is me. I was finally taken back by a hospital volunteer to see Ryan. He asked me where we were from and I told him UT. He asked me if we were of the LDS. I told him yes. He then told me how he volunteered once a week at the Family History Center. He said that he was Presbyterian, but that the LDS allowed him to work at their center. We discussed how it was our hope that no matter what your religion or beliefs, perhaps we could all love each other. He thanked me and then left me to see my son.

Ry was pretty groggy when I first saw him, and he stayed that way for the rest of the day. I wrote the following update for our family and friends who have been following his story.

Day 1 update - Ryan has been in significant pain today. So much so that he struggles to speak. They used a special type of tubing to intubate him as they collapsed only his right lung and kept his left lung inflated. His throat is very sore and his Adams apple is visibly swollen. This is to be expected. He should feel relief from that within the next day or two. Ryan has a chest tube and it is still draining a fair amount of fluid. He has a bubbling leak in his lung that they are monitoring very closely.

Just as we were getting ready to transfer to a room Ryan's oxygen levels started to drop. 

They placed a nasal cannula and began supplemental oxygen at 2 liters. They began to wean him off the oxygen just before shift change, but so far they have not been able to get him completely off of the supplement. They need him to take deep breaths, but his pain is so high that he struggles to do so. I am ok with the cannula as it is helping him relax for now.

He has been asleep since about 7:30 local time, although he has spent very little time being coherent today as they do their best to manage his pain. This afternoon he spiked a fever which is extremely rare for him but it has resolved itself as of this post.

Ry was not started on IV fluids right away, but the need for them became apparent and they began a bag of saline fluid just after 8pm.

One miracle that we witnessed today - we were sitting in the family waiting room and the local news was on. The mountain pass we drove through on the way to CA had 1-2 feet of snow. We missed the storm by 12 hours. We truly have been watched over.

I never would wish a situation on someone that would constitute the need for so many people to pray for one's self, but I would wish that everyone could feel so much love. We have felt the love of all of you. Your faith is tangible. The arms of our Heavenly Father have been wrapped around each of us and we feel it.

The staff here have been amazing. We have spent a fair amount of time in hospitals and I cannot recall another time that we have been treated so well. We waited quite some time for a room today and the staff felt so bad that we were gifted $40 for the gift shop for Syd and $20 for the cafeteria. Who does that? Another tender mercy." 

Ryan's Chest Tube - Day One

Day One - Surgery

After a long day of driving, and intermittent sleep, we had to be at the Ford Surgery Center at 9:15 am for check-in. Our hotel was about 12 minutes from the hospital with no traffic, and 17 minutes with traffic. Brett took Sydney down to the continental breakfast to eat while I finished getting ready. It was raining outside and I prayed that the rain was not a precursor for grim things to come. I was not looking forward to having my son put under again. Medical procedures for Ryan have gotten harder on this old mom throughout the years.

We checked in before our scheduled time and then sat and waited for the staff to call us back. Sydney wanted her hair french braided so I quickly got on that task, and I welcomed the distraction. A nurse came out and called Ryan back for vitals and weight. Brett went with him. They seemed to be gone for a while so I asked the lady at the front desk if I would get to see Ryan again before surgery, or if that was it. Just as she went to ask, Ryan and Brett walked back through the door. We sat for a few more minutes - Brett, Ryan and Sydney watched videos on their phones and I read an article on my LDS app on my phone. I needed peace.

Syd, Brett and Ryan in the first waiting room.

When Ryan was called back again, I went with him this time. Brett and Sydney said their goodbyes and we went back to our corner. Ryan was given the remote and he chose a movie to watch to pass the time. He chose "Emperor's New Groove", a family favorite.

Ryan had to clean his body with antibacterial wipes. I helped him wash his arms, neck, and back, and then I was banished to outside the curtain. He's a teenager now, and mom seeing his goods is embarrassing. I understood.

Ryan was given two patches to numb his hand and his arm when they took his vitals. After he was fully dressed and ready for surgery, the nurse came in and tried to start an IV. She removed both patches and examined his hand and his arms. She struggled finding a good vein. Ryan's veins were very small. It didn't help that we had spent the entire day in the car the day before surgery not drinking enough water.

She attempted to place the IV and was unsuccessful. She called the anesthesiologist in and asked him to place the IV. They had a device that shot numbing medicine into the area where the IV was going to go as neither of the spots where the patches were placed panned out. It was less than a minute before his IV was placed. As the anesthesiologist was flushing the line Ryan said, "Thank you. I feel relaxed already." The anesthesiologist grinned and said, "I haven't given anything to you yet." Ryan replied, "Thank you placebo effect."

The entire room burst into laughter.







I signed all of the consents and it was time to say goodbye. Ryan and I both were a bit emotional. Neither of us knew if this was a final goodbye and we were both nervous at the possibility.

Headed to the OR

When Prayer is All You've Got

In January we learned that Ryan had a cyst in the upper part of his right lung. The doctor in Salt Lake didn't feel like it was much to worry about and the doctors that we see in California didn't say much about it at the time.  Our visit to CA in July put us on a path to making a plan to remove the cyst. Having the cyst was a risk. There were restrictions - no flying on an airplane, no shotgun shooting, no high elevations, and no high impact sports. All of those activities caused a risk of the cyst rupturing, and of Ryan's lung collapsing.

We kept Ryan from many scout activities. We said no to friendly games of soccer, and football - although we allowed those activities on occasion. Any time Ryan felt like he might have a pain in his chest, he worried that this was it. When we first learned of the cyst, it caused quite a bit of anxiety for him. He would climb in our bed and on many occasions need to be between us to relax enough to fall asleep. Those nights I would wait until he was out and I would slip out of bed and sleep in his bed. Three adult sized people don't fit well in a Queen sized bed.

Our original plan was to have the surgery during Christmas break. I didn't want him missing much school. He is taking quite a few hard classes and I hated to have him miss them. In September I received a phone call from one of our doctors. There had been a flood in Southern UT and he was calling to see if we were a part of the 'Mormon' Group that was affected by the flood. I giggled to myself and told him that we lived several hours north of the flooding and that we weren't affiliated with that group of Mormons (The FLDS clan). As we were talking he asked me if we were still planning to come to CA for the surgery and I told him yes. He mentioned that the University shuts down mid December until the end of the year and that most doctors take that time to spend with their families. I decided then that I needed to start looking at other options.

I e-mailed the surgeon and he wrote back and told me that November 2nd was the best day for surgery - an entire 6 weeks earlier than we had planned. I wrote to Brett and told him and he asked me to see if there was any chance that he could push it back to the 16th of November. He couldn't. So, it was now time to start making plans to travel to CA.

Many things had to come together to make the trip. Physicals had to be scheduled, Ry had to have an echocardiogram. Hotels had to be booked, and we were put on the list for the Ronald McDonald house.

California is a very expensive place to be. Brett and I talked a lot about doing the surgery in Salt Lake. There is a respectable surgeon there, but we feel that the post op care is better at Stanford.

The days leading up to the surgery were very hard on me. I wondered if I had done enough. Had I taught Ryan all he needed to be taught. Would this be our goodbye? Was I really ready to accept my Heavenly Father's will. Oh how I wanted to, and oh how I want to bring Ryan home. Alive. To my house.

Our bishop asked for permission for our ward to have a special fast for Ryan. Fasting is a chance for us to lay aside our physical hunger and strengthen our spiritual hunger. It is also a chance for us to ask for special blessings on behalf of people we love. We agreed that we could use those prayers. We are a fairly private family. I don't like my life being broadcast, but I felt that we needed to ask for specific prayers. I posted on our ward Facebook page and asked for specific prayers on our behalf. I did not expect to feel the love so strong. Many people around us began sending money. I had asked that we have prayers that we could get in to the Ronlald McDonald house, or that we could at least find a hotel that we can afford. We are a few days in to the trip now and while we don't have a room at the Ronald McDonald house, we have been given a substantial amount of money from people who love our family (some I didn't even know cared), and we will be ok.

Sometimes the blessings come when prayer is all you've got.

Words of Wisdom

This week I had the opportunity to spend some time with Ryan one-on-one. I love the age he is at right now. He opens up to me and we can talk for hours. He asks thought provoking questions and has some really great insight. Sometimes my heart wants to break at the topic. Every day I ask him for his words of wisdom. A lot of time he tells me something silly, but every once in a while I get some real gems. So as to document our lives, I wanted to jot down a few things he's taught me, as well as a few things he's talked with me about recently.

Ryan had an assignment to memorize a poem for his English class. He could choose any poem he wanted to and my heart died a bit when he sent his choice to me.

In the Event of my Demise

By Tupac Shakur

In the event of my Demise
when my heart can beat no more
I Hope I Die For A Principle
or A Belief that I had Lived 4
I will die Before My Time
Because I feel the shadow's Depth
so much I wanted 2 accomplish
before I reached my Death
I have come 2 grips with the possibility
and wiped the last tear from My eyes
I Loved All who were Positive
In the event of my Demise 

Yesterday when he got in the car he told me that they had a great discussion in English. The teacher is asking thought provoking questions and the topic yesterday was 'Doctor-assisted suicide'. As we were pulling into the driveway, his voice began to crack and he told me that a girl in his class tried to make the argument that doctor-assisted suicide was absolutely ethical. He turned to me and said "Why would someone do that? Mom, I'm faced with death and all I want to do is live!" Oh my heart!

And finally, I was pressing him about his belief in God and in Jesus Christ. I said to him "Ry, what if Jesus was just a nice guy. Maybe He just did some good things. Perhaps He wasn't who they say He was." He turned to me and said "Mom, Jesus is the only one that has been able to command His own death. People who were crucified died of dehydration. Jesus, after his mission was through, commanded that He return to His Heavenly Father. Only a God could do something like that." I sat in silence. I could not refute that. Here, my 14-year old son taught me. I love his words of wisdom.

A Little Bit of Syd

A few years ago Syd was invited to play on a competition league soccer team. Little did we know that invitation would shape much of what we do for the weeks, months, and now years to come. Sydney loves playing soccer. It is good for her. She feels like she is a part of something, and being active does wonders for her diabetes care. It is quite amazing how much exercise can affect your blood sugar.

Last summer we moved Syd to a new team. We have now been a part of 3 teams. Her current team is amazing. They don't win games often, but the girls on the team are friends, and there is very little drama. I have also learned to bridle my mouth. I am competitive by nature. And by competitive, I mean I have a hard time watching girls stand on the field, and I have struggled watching a team lose. I have been grateful this year that the atmosphere of our team is so different that losing has been ok. Girls aren't bad talking the other teams or even the referees. They're disappointed when they lose, but winning is not the focus. Syd is learning that there is much more to a team than winning and I'm grateful for that.

Syd's first shot

The ball went just past the goalie's gloves and made it in. Go Syd.

When What is Seen on the Outside is not Reality

Tonight as the silence of the house surrounds me, my thoughts have drifted to Ry and the daily struggle he must feel. It's been a long time since I've updated. I didn't realize how long until I logged on to my own blog and realized that the last posts were of our London trip almost a year ago.

We've had a fairly uneventful year. Ryan's lung function has been stable. In July we took him to the Lucille Packhard Hospital at Stanford University in Palo Alto, CA. We met a new pulmonologist there. I loved her. She was very encouraging that the day would come when Ryan would be 'healed'. I use that term lightly though as I know that 'healed' does not mean better. 'Healed' means the disease will not progress. Although, at any time in his life, another virus can trigger the progression again and with this disease, progression is the enemy as it is irreversible.

Last December Ry had a scan done at the University of Utah. They injected a radioactive dye into his veins and then scanned his lungs to see the oxygen flow as well as the blood flow that goes in and out of his lungs. I was first to receive the results. I read them and of course did not understand all of the lingo, but I was somewhat surprised at some of what was said. It noted that his lungs were 50% effective.

In January I spoke with the doctor in Salt Lake over the phone and mentioned to him that I had the results of the scan and I'd love to chat with him about them. It was news to him that we even had the scan as he didn't think we had done it yet. He called me roughly a week later and told me that he wasn't surprised by the results of the VQ scan, but he was surprised at the CT scan that was done after the radioactive scan was finished. Ryan has developed a cyst in the upper right lobe of his lungs. It is the size of a ping pong ball. He sent pics to the California doctor and she said that she had never seen this before. We were once again in unchartered territory. It seems that is a common occurrence with Ry. I sent the CD to one of our doctors in CA and he had another radiologist look at it. He's convinced that the cyst was there a year ago. The doc in Salt Lake is not. So, there is some disagreement and thus Ryan has a few restrictions now until we can get doctors to agree on what to do. No contact sports. No shotgun shooting. No flying in an airplane. I have seen the images. If there truly was a cyst a year ago, it has grown exponentially. If there was not a cyst a year ago, there is one now, and what do we do about it?

We have a few options of removing the cyst. We can have him opened up again. There are risks doing that. We can have them stick a needle in it and extract it. There are risks that his lungs would collapse by doing that, and that would cause us to have to put a chest tube in. There is a risk that the cyst will rupture on its own, causing his lung to collapse. He is most concerned about that possibility.

In January I also learned that I had read his lung function results wrong for the past year and a half. There are two numbers that they look at and really care about. The first number I thought was his lung function, which has been 67% steadily. The second number is 49-50%. I never looked at the 2nd number as I believed that the 67% number was the most important and that was his lung function. I learned that I was wrong. So, his lung CAPACITY is 67%, and his lung FUNCTION is 50%. Worse than I thought for sure.

The good news though is that it hasn't gotten worse in the almost 2 years that we have been at this gig.

Ry has struggled a lot the past few months with a bout of anxiety since we found out about the cyst . On the outside he looks perfectly fine. To the world he is happy and intelligent. He starts to break down around 7pm or so. His mind cannot shut off. He is in our bed most nights late into the night because he can't shut his mind off. He is nervous, but he can't explain why. He feels most safe between the two of us in bed. I have actually let him fall asleep between us and I've gotten up and slipped into his bed or in to the guest bed so that he can feel safe and actually get some sleep. We are finding that we have to be more creative about one on one time with each other as he needs us so much at night. He doesn't freak out like one might think you would with an anxiety attack, but he goes crazy inside and it is evident.

Ryan's situation is hard to explain to people. Because he looks so healthy (which is a huge blessing), they don't understand that he is really unwell. People ask us how he is doing and it is hard to say. I don't want to say good because he is not good, but he is not bad either. He's stable. His future is unknown, and sometimes terrifying, yet he has goals and aspirations that surpass anything I could ever imagine. We have been so blessed with his life. It is just so hard when what is seen on the outside is not reality.

Make-A-Wish Trip - London - Day 6 - Going Home

Our flight was scheduled to leave at 2:05pm. I had tried checking in the night before and had no luck. We had the wrong confirmation code for our flight back and the Delta ticket desk couldn't find our tickets. I called Salt Lake and let them know what was going on  and as I was talking I found our ticket number. I called Delta back and they gave me a new confirmation code. Whew!

We were so fortunate, and I am so grateful to Make-A-Wish. They think of everything. We had a cab ride back to the airport and it was prepaid. The only thing we needed to do was get our stuff together and be ready by 11am. Ryan wanted to take one more picture. He had picked up a Sonic screwdriver, a Dr Who accessory, and he wanted to go back to the Tardis and take a picture dressed up in his bow tie, holding his screw driver. As we made our way back to the Tardis, it began to lightly rain. Yet another miracle. We were in the land of rain and it only rained the first day we were there, and the day we were leaving.

The cab driver picked us up and we made our way back to the airport. She was very kind. She was from Prague and had been in England for 5 years. Most of the cab drivers there work for themselves. They get special certifications and that is their full time job. She told us that winter is her slow season so she has to save up during the rest of the year to make ends meet.

As we entered the airport, all of Ryan's dreams came full circle. There was a baby grande piano right in the middle of the airport with great big letters on it that said "Play Me". He looked at me and Brett and sat down to play. Ryan loves the piano. He is very talented. He has been taking lessons for 2 years now and has picked it up so quickly.

One last thing Ryan wanted that he was not able to have at any other time on our trip was a Lamb burger. We found an eatery at the airport that sold them. They were 11 pounds - the equivalent of $19. We had learned that we couldn't worry about the exchange rate on many things as we would have likely starved to death. Everything is so expensive because the value of the US dollar is so low.

We had a great trip, but it was sure nice to be home.

They were both exhausted.

Make-A-Wish Trip - London Day 5 - Chocolate and a Myriad of other things.

Monday was our last full day in London. We hadn't purchased any souvenirs yet and we knew that if we were going to, today was our day. Since we had missed the changing of the guard at Buckingham Palace, we decided that we would head back that way. Silly us didn't realize that in order to really see anything, you needed to be at the palace quite early. They allow people right up to the gate. Those who get there early see the pomp and circumstance. Those who get there late get to see a few guards, a few horses, and the band. It really is hard to make sense of what is going on otherwise. We decided that we didn't want to stand around for 40 minutes hoping we might see a few men in tall black bear hats.

Do not mess with the Police on horses. They have no problem backing their horses bums right into your face if you are not where you should be.

As we were leaving the palace we heard some loud bangs. At the park adjacent to the palace was another celebration. I walked up to the police officer that was blocking off the park and asked her what was happening and if it had to do with the changing of the guard. She kindly told me no, and that they were celebrating the coronation of the queen by having a 41 canon salute. It was quite impressive. There were people dressed in military type uniforms and they rode in on some beautiful horses that were adorned with armor. I asked her where the queen was and she told me that she doesn't come to things like that anymore. Fascinating. I'm pretty sure I would resent the Royal Family if I lived there. Everywhere you turn there are plaques letting you know that the gaudy statues are brought to you by the common taxpayer. Thanks England Peeps for being taxed to death so that we all can see statues. Oh yeah, and thanks for paying for celebrations to honor your queen, even though she doesn't feel that is important to even show up to her own party anymore.

When our friends were in London on Saturday they told us of a store called Primark. It is a clothing store and the prices are quite reasonable. We decided that we would find a snack and then make our way over to Primark to see if there was anything there that we could bring home with us. By the time we got to where the store was it was lunch time. We ate at a great sandwich/salad/wrap place. I got a salad that had hummus and quinoa on it. It was delicious, although my family didn't agree. My palate is definitely different than theirs.

We also found a convenience store where we began to stock up on chocolate. One cannot go to England without coming back with a boat load of chocolate. It is the rule.

Primark did not disappoint. We were able to get several t-shirts and a great Father's Day gift for Brett. We made our way back to our hotel to put our chocolate away and then we made plans to visit some noteworthy sites to take pictures for Ry. We were able to take pictures at Harry Potter's 9 3/4 platform, and Sherlock's door. We ate dinner at the train station and we headed back to Picadilly Circus to finish up purchasing the souvenirs that the kids had picked out the day before.

Make-A-Wish Trip - London Day 4 - Biking and the Science Museum

We must have all been tired. None of us moved until 10am Sunday morning. Our intention had been to go to church, at least to Sacrament meeting, but neither of us set an alarm and we were out. I'm not sure that I moved all night long -- my first night of actual sleep since we arrived. Ryan had wanted to go to the London Science Museum so we thought that this day was just as good as any to go. We all LOVED the museum. Alas, I am getting ahead of myself.

All around London there are bicycles for hire. You put your credit card into a machine and it spits out a code that will unlock a bike. Brett had wanted to have the experience of biking the streets, I did not want the experience. I was not looking forward to riding a bike without a helmet on the wrong side of the road. I've been hit once. I didn't want to experience another car. I lost. We rented the bikes and headed around the corner. The kids were doing great. I was a mess, but I followed behind making sure that if anyone was to get hit, it would be me. All was well until Ryan and I had given up a bit of space between Brett and Sydney and a double decker bus thought it a good idea to cut in between us all. It came very close to Syd. Ryan and I screamed for Syd to hurry out of the way. Then the crying ensued. I made it clear that riding a bike with children on the streets of London was a BAD idea. Syd felt like she had done something wrong. She hadn't. The bus just felt like it needed to be in between us all and it scared me more than I wanted to be scared on vacation. We ditched the bikes and then went and ate breakfast at a waffle place. They were delicious, and I now need to recreate the deliciousness at home.

After breakfast we walked to the Science Museum and to our surprise directly across the street was the Church of Jesus Christ of Latter-Day Saints. We had no idea it was so close to our hotel. I felt horrible for missing, but told myself that perhaps we had made up for it by going to the temple just a few days before.

We spent hours in the museum. There was so much to see and I don't think we saw all that we could have. There were several exhibits there that allowed the kids to try fun things. Ryan was able to learn programming, and experience the amazing technology in 3D printing. Syd and I had separated ourselves from the boys and she spent a good hour in the Launch Pad room that had more activities than I can even remember. Because we had been separated for so long, I told Syd that we should probably make our way to find Brett and Ryan. For all I knew they were waiting in the front lobby. We went to the elevator and just as it opened, Brett came out. He had the same feelings I had and had come looking for us. He left Ryan at the exhibits and had been scouring the floors. I am happy that we were able to find each other and go back to where Ryan was having the time of his life. Sydney was able to make a craft that had lights sewn on it. We used conductor thread (I had no idea it even existed), and sewed stitches to the negative line of the light and the positive line of the light. We had a great time and were sad that they were closing as I would have loved to finish what I started as well.

 

The 'R' that Ryan made using a 3D Pen

Sydney's Craft. It's kind of hard to see, but the light on the left is lit up.

Yes, he was with us. He just always the had camera.

Thermal Heat Sensors...so cool

We left the museum and Brett wanted to try the bikes out again. We were very close to Hyde Park and he wanted to ride the bikes inside the park. He convinced me that we would not be on the streets again and we would just check out the park and be done. Well, we rented the bikes, rode the few blocks to the park and there was a sign on the park gate stating that the park was closed to bikes that day as there was a triathlon going on. Meh. As we were standing at the gate discussing whether or not we would ignore the sign (I'll let you decide for yourself what my opinion was), Sydney told us that she felt that her blood sugar was low. We checked and sure enough, she was in the 50's. She needs to be over 80 to be safe. So, our answer was made for us. We rode back to the nearest ice cream stand and got her an ice cream cone to bring her blood sugar up. By this time we were starting to get hungry. We ditched the bikes again and headed to get something to eat.

We found a place to eat and during our meal Brett realized that he no longer had his American Express card. We figured he had left it in the bike rental machine. It had been at least an hour since we left that place so we knew the chances of finding it were pretty slim. We walked back anyway just to check to see if anyone had taken it out of the machine and left it there. No luck. We then new that we had to make it back to the hotel so that we could call the credit card company. Brett couldn't use his International SIM to call a US number. I can't remember if I have mentioned this already, but I am SO grateful for Skype. I had purchased a $10 credit a few years ago and it came in handy several times on our trip.

After we had canceled the card we rested a bit and then headed back out to look around. We went to Picadilly Circus, London's version of Time Square and got dinner. We let the kids look at the things they might want to buy to bring home and then we called it a night.

Make-A-Wish Trip - London Day 3 - London Eye and a Big Surprise

As noon was approaching, Brett and I were getting a bit anxious to get over to the London Eye. We walked from Buckingham Palace to the Eye. It was lunch time and we were all hungry. Sydney had been begging for McDonald's since the time we got there. I hate that place. Our rule when we travel outside of our local area is that we have to try different food. No familiar eateries allowed. Today though, we needed to make an exception as we were pressed for time.

Ryan hates McDonald's as much as I do and had seen a sign to Subway so Brett took Syd into McD's and I took Ryan to Subway.

For the past 5 years Ryan has been interacting with the son of one of Brett's former co-workers. They are quite hilarious to listen to and they have become pretty good friends. For a day and a half Ryan kept telling us that he wanted to take the train/bus to see Benj. However, we knew that Benj was coming to see him, so we kept putting off the suggestion that we would allow him to go. He was getting a bit persistent, and we both put our feet in our mouths several times and had to recover.

Ryan and I got our food and headed back to meet Brett and Syd. McDonald's had a nice set of tables and chairs outside and we were hopeful to be able to eat with Brett, or at least take their seats when they were finished eating. We were very fortunate while in London, there was no rain most of the time we were there. The only downside was that it made for a lot of people. When we arrived back to McD's, the tables and chairs were full and Brett and Syd were sharing with a man and his daughter. Brett kindly gave up his chair for Ry and I stood near the table to eat my sandwich. Brett whispered to me that our friends were across the river and that he was going to get in a spot to video Ryan's reaction when he saw his buddy for the first time face-to-face.

I finished my sandwich and Ryan was scarfing his down. I had to remind him that the sandwich was not going anywhere. I kept watching the stairs for our friends. I finally found them as they were approaching us and I waved to Jez. They walked over to our table and Jez said something to Ryan. He didn't know who was talking to him. He looked passed Jez and saw Benj standing there. Ryan was SOOO excited.

We then spent the day with our friends. We sat in the park and visited, took a boat ride on the Thames river, and then rode the London Eye. The only downside to this day was that we were only able to spend about 4 hours with our friends. We were so sad that they had to leave so soon, but so grateful that they took the time, and spent the money to come and spend with us.

Miss Anna feeding the pigeons

This picture cracks me up. Anna wasn't hurting anything by feeding the birds, but it bothered her big brother :)

Doing what boys do best - electronics.

London Tower Bridge

Big Ben

Looking down from the Eye

Syd and her new friend.