Dream Factory Christmas.

Recently Cody was invited to tell his story of his dream trip at the Dream Factory's annual Christmas party 🎄 for their volunteers. He was super nervous to talk to everyone but he did a good job. We were very honored to be guests at the party.  He told his story of the trip and getting to sit through hurricane Matthew. There were snacks and games.  We had a picture made of several of the great days we had and had it framed.  We gave it to them as a gift as a thank you.  He had a great time and it was a big honor for him to be selected to speak at a closed board meeting of the Dream Factory.

 

It's a great foundation please check them out. They do some wonderful things. (Dream Factory)

Give the kids the world.

This October we got the trip of a life time.  The wonderful people at the Dream Factory and Boulevard of Dreams Selected Cody to be a Dream Factory recipient to go to Disney World, Universal Studios, Sea World, and stay at Give Kids the World.  We found out late in the summer that Cody was selected for his rare disease.  It was an amazing thing to find out and when we were selected we had no idea how great it was going to be.

It seemed like forever but we finally got to leave for the trip.  Our trip was scheduled from October 1st through October 7th.  We flew out early Saturday morning on the 1st.  Excited is a word that doesn't even come close to describing how we all felt.  It was a non-stop flight to Florida.  We were greeted at the airport by someone from Give Kids the World.  He was holding a sign with Cody's name on it.  He showed us to our rental car and gave us instructions on how to get to the village.  We began our drive and headed over to Give Kids the World.

It didn't take long before we arrived at the village.  It was nothing like I've ever seen.  Little cottages for families to live like they were at home.  They were 2 bedroom "Duplexes" that had a room for mom and dad and a room for the kids.  The kids' room was the "Master bedroom" with a shower and a Jacuzzi tub.  There was a fully loaded kitchen for cooking, if you so desired, and a nice family room with a TV and DVD player.  The cottages were amazing.   We got unpacked and made our way around the village.  Got some free food, 3 square meals a day and all the ice cream you can eat 24 hours a day.  We were there a lot!

We headed over to Disney Springs on day one and got some shopping done and of course did a little Pokemon hunting.  Having a rental car was a new experience for us in Disney because we usually stay on park when we go.  So it took some adjustment getting used to driving instead of taking the bus everywhere.

As I type this post I realize I cannot begin to describe our every day without this being a 27 page post.  There was so much that we did and so much that we experienced that I can't begin to tell you everything.  I can tell you we were in our second ever hurricane and both were while we were visiting Disney.  We got to live through Hurricane Matthew, and because of that our final day was not Friday but rather Saturday the 8th.  We lost about a day and a half due to the hurricane but we wouldn't change anything about the trip.

If you want to see some photos and videos from our trip head out to this link and you can see what all we did. https://goo.gl/photos/Ui5JmdohHCXKKC3FA

The great thing was we had Cody properly dosed the entire time so he was able to enjoy the trip without too much down time.  That is not to say we didn't have to go home early some days and go home in the middle of the day to get some rest, but for the most part he was able to get through all the parks without too much issue.

If you have time go to:

• Dream Factory of KC
• Give Kids the World
• Boulevard of Dreams

All of these great foundations helped us have a great trip, even with a hurricane pounding on us.

It was a success

If you've been reading this blog you know that in August of 2015, my son was diagnosed with a life-threatening disease called Adrenal Insufficiency. For several months after he was diagnosed we as a family struggled with why my son got this disease.  Since then I have moved to what can I do to help him and others like him.  For several months I worked to create a fall baseball tournament to raise money for Adrenal Insufficiency United (AIUnited.org).

The baseball tournament was held at the Legacy Baseball Park Complex in Lee’s Summit with the help of the Lee’s Summit Baseball Association and Triple Crown Sports in KC.  The name of this tournament was called The Little Slick.  The Little Slick was a wood bat baseball tournament for A/AA teams ages 7 to 14 (7u and 8u machine pitch).  The tournament was held from September 16th through the 18th.  This was considered a fall ball tournament which meant you play up to the age your team will be in the spring of 2017.  

All of the proceeds of this tournament went to Adrenal Insufficiency United (AIUnited.org).  Adrenal Insufficiency is a rare disease that occurs in all age groups and affects both sexes and is life-threatening. Adrenal Insufficiency is a disorder that occurs when your body produces insufficient amounts of certain hormones produced by your adrenal glands. With Adrenal Insufficiency, your adrenal glands produce too little cortisol and often insufficient levels of aldosterone as well.  In times of stress due to illness, intense physical activity, or injury, an emergency injection of medication is needed to prevent a deadly adrenal crisis.  Protocols which will allow administration of the emergency injection are needed because they currently don’t exist in the KC area.  Through patience, creativity and a whole lot of fun, The Little Slick, is hoping to make an impact on the lives of children. adults, and their families with education and awareness of Adrenal Insufficiency.  We are hoping this tournament will help us raise money for this cause.

We are very Happy to announce the tournament was a huge success. We were able to meet our goal of $10,000 for Adrenal Insufficiency United. Thanks to everyone who donated, helped, and every team that played. I can't wait until next year now that I have an idea of what I am doing we might be able to raise even more.  Feel free to check out https://www.facebook.com/LittleSlickTournament/ and see what all we sold in silent auctions and raffles.  Thanks to all our great sponsors and the 44 teams that played in the first annual tournament.  My hope is that next year I can make it even bigger. 

Sometimes life gives you lemons and you can't make lemonade

It’s been a long last 10 to 12 days. Cody has been battling his asthma, an upper respiratory infection and his AI has really been getting him down. A trip to see his regular doctor and 2 visits to Children’s Mercy Hospital he is back to normal. He’s missed, I think, 6 days of school. I am not sure I’ve kind of lost track. At any rate we are glad he is feeling better and ready to go back to school. Cody's last day at school was almost a week ago. We’ve talked to him and he’s ready to try and do school again. He thinks he can handle it. Unfortunately, we got news today that one of his favorite teachers suddenly passed away. Since he wants to go to school we have to break the news that one of his teachers passed away. I didn't want to given we just today got him back to normal after our last visit to Children's Mercy Hospital. We were both worried about if he could handle the news and if there is a chance this news could be too much for him to handle. How do you tell a child of 13 that one of his teachers died let alone a child with a disease that doesn't allow him to control his emotions? We sat him down to talk to him. We know that if we don’t say anything that tomorrow while at school there is going to be talk about the death of a great person. Since this teacher was teaching one of his favorite classes we knew it was going to be a hard conversation. We sat him down and told him what happened today. Unfortunately, I could see the color drain from his face. I could see his eyes well up with tears. We talked for a while and he said he was a nice man and he was sad for his family. The love my son has for other people never ceases to amaze me. He spent the better part of the next hour crying off and on. He was very sad about it all. Jaime and Cody snuggled on the couch while he tried to calm down. It was a hard hour for all of us. He was sad that one of his teachers passed away while Jaime and I worried that this one thing was going to send him into crisis again. For a kid with Adrenal Insufficiency this extra stress is something he may not be able to handle and since his body doesn’t make anything to help with this new stress all the work we did to get him healthy today could have all been lost. While he and Jaime were cuddling on the couch Jaime’s phone rang. It was a number we didn’t recognize but it was late in the evening so she answered it just in case it was someone we knew that needed help or something. As it turned out it as one of Cody’s teachers. She talked to Jaime about how Cody was doing and she asked if we heard the news. Jaime told this teacher we did hear the news and told her we were actually talking to Cody about it when she called. The teacher is one of Cody's amazing teachers and she knew enough about Cody and his disease enough to know that tomorrow was going to be a difficult day for any kid. She recommended that we leave Cody at home because there is going to be a lot of tears and unhappy kids all day. They are going to have counselors there tomorrow for the kids but this teacher knows Cody so well she knows that the stress of this event will be too much for Cody to handle. She told us that Cody’s health was too important and he needed to stay home. She promised us that none of the teachers were worried about Cody missing school and they all know it is more important for his health that he stays home. This doesn’t mean he won’t have to deal with it but the first day back is going to be focused on this teacher and his death. Whereas a day later he will still be gone but the focus will be on the new teacher and less stressful for Cody. This doesn’t mean it won’t be hard for Cody, but the focus won't be on kids handling the situation. So even though he’s likely healthy enough to go to school we are now going to keep him home one more day because a day like tomorrow may send him into crisis again. It’s a sad thing because if he was a normal kid he could spend the day with his friends and grieve like a normal person, but he’s not normal and he can’t do what most of us need to move on from terrible things like this in our life.

Friends, family, the kindness of complete strangers and baseball.

This section is titled baseball and the kindness of complete strangers.

Since my last post I am happy to announce that Cody did indeed get to go to the T Bone game, care of a player on the team named Nate Tenbrink.  

He got with me and worked out a day for Cody to go see a T Bones game.  I won’t share a lot in words about the experience but I will share a video I made of how the day went.  Those of you who follow me on Facebook got to see some of the photos of the event so this may be duplicated information for you but hopefully this whole thread today won’t be that way.

We started our day as a kind of summer ending blowout for the whole family.  We went to Dave and Busters and had lunch and played some video games.  We walked around doing some Pokemon hunting and headed to the ballpark about 3:30 PM. 

Nate set up an amazing day.  Cody got to basically be a T Bones player for the day.   He showed us around the locker room and introduced us to the team as they got to the park about the same time.  Nate talked about his routine and what the routine was for most of the players did on a daily basis.  We got to see the rosters, scouting reports, meet all the coaches and managers.  Everyone was super, they treated him like a player on the team.  Of course being a locker room it was smelly, crazy, loud, there were TV playing ESPN and the Olympics.  Some players were scheduling their next day off to go play a scramble at the local golf course nearby.  There was loud music playing the entire time.  Apparently each player gets a playlist day.   Today’s mix was a mixture of Latin music and hard rap.   I can’t begin to do justice to the atmosphere it was amazing for Cody to fell what it is like to be a baseball player in the real world.  It was fun to watch Cody as you could see him take it all in. Sure we can discuss that the level was not MLB but there are kids on that team fresh out of college trying to make a showing in the hopes of being picked up by a team.   There are also former MLB players on that team, like Nate, who were drafted by MLB teams and still living the dream of maybe getting back there some day.  Some of them just play because they love the game.  Anyway from here I will let the video speak for how the rest of the day went.  From walking into the locker room to his throwing out of the first pitch he had been with the team in some capacity for about 3 and a half hours.  It’s a little over 18 minutes long but it was hard to recap his wonderful day in a much shorter fashion.

Needless to say he/we had an amazing time.  We stayed until the end of the top of the 8^th inning.  Cody was running out of gas and we didn’t want to cause a crisis.   At the time we left we waved good bye to Nate and headed home.  Cody was sad the T Bone were losing 3 – 0 to the Lincoln Saltdogs.  As it turns out the T Bones came back to win the game with a walk off HR in the bottom of the 9^th inning to win 4-3.  Cody was devastated that we didn’t stay for the whole game but he started complaining of being tired in the 5^th inning so we were pushing it to get to the 8^th.  He understands himself well enough at this point to know that he needed to go and he was the one who finally gave to OK in the 8^th to go home.  I wanted him to stay as long as he could but the overall day I think was finally all he could take.  As a side note I am sharing Nate’s side business as he trains youngsters up to high school age players along with a large group of pros at his facility in Lenexa.  If you have a kid who wants some one on one time with a pro at any position check them out.  It is the least I can do for what he did for Cody.  The name of the place is the Kansas City Fieldhouse.  Check it out I think you'll be impressed.

This section is titled friends, family, and baseball.

As many of you are aware I am holding a tournament at Lee’s Summit Legacy Park Baseball complex September 16-18^th.  All of the profits will go to Cody’s national foundation AIUnited.org with them using them money here locally to help us enact some changes within the community at hospitals, at schools, with EMS and fire department.  There are many things that need to change in order for Cody and people like Cody to be safe in their life with his rare disease.  We are getting a lot of support from the community and others on this project and we hope it is a huge success.  I have created a Facebook page to share information about the event feel free to check it out.  We would also love to have you out there even if you don’t have a team playing in the event we will have a lot of things to raffle off and have several silent auction items to buy to help raise fund for this cause.  Saturday will be the big day for all the fun events.

Unfortunately, Cody’s competitive baseball team broke up this summer and he is not playing the fall as we had planned.  I won’t get into the details but let’s just say it’s how competitive baseball works sometimes and this time it happened to us.  At the time of the breakup I came to realization that Cody wasn’t going to be able to play in the tournament that is essentially being held for him and his disease.  This of course was hard on us and Cody, but he’s a trooper and he decided that it was all OK.  He said he would be there to help at the tournament and help run it with Dad while we raise some money for his disease.  I don’t know how it is God blessed us with such a great set of kids that have an understanding of life and living with life’s challenges and just going with it.

For the last few weeks I have been racking my brain as to how to get enough 14-year-old baseball playing kids together just so I could get Cody in his tournament.   My friend and fellow coach Brent Walker’s twins and Cody have basically played together since they were about 8 years old.  He and I have discussed several options and we are working hard to finally get enough players together for a team.  

Working on the board for Lee’s Summit baseball I have some access to some coaches on the board who have kids at Cody’s age in recreational baseball and they have agreed to let their sons play with us.   Additionally, my nephew Cameron is going to play with us.  Cody and Cameron are best friends, but because of their age difference of a few months and the way the ages work in baseball Cameron has always been a year behind Cody in the league.  The only time they ever played together on a team was Tee Ball in Greenwood.  Ever since then since the age cutoff of April 30 has meant that Cameron had to play a year younger even though Cody and Cameron are basically the same age but Cody was born in February and Cameron in May of the same year.   I know Cody is very excited that Cameron will be playing on his team for this tournament and I personally can’t wait to see them in matching Jerseys together.   Oh and the added benefit is I know I have a scorekeeper!  Thanks to my sister-in-law Kim for volunteering to keep score for us.  Oh wait I haven’t asked her yet.   Hey Kim will you be my scorekeeper :-)?  Right now we have 8 players and we are working to get to 10 maybe 11 but officially with 8 players we have enough to at least play in the tournament.  I was happy to announce this information to my son last night and he was excited to hear the news.  

My goal was not to put together a team to win his tournament I just want him to be able to play.  Baseball is his life and his love and to this point I have been devastated that he wasn’t going to be able play.  Again God has surrounded Cody with people in his life that are loving enough to see what a big deal this is for Cody and his cause and helped us scrape together enough just to be able to play.  I am not totally sure what next year will bring for us and baseball.  We are working that out, but right now we are happy to get this road bump figured out for the tournament.   Win or lose Cody doesn’t care he’s just glad he’s getting to play again.

Life is wonderful!

It’s been a while since I have posted and frankly that is a good thing.  We haven’t had many issues since baseball ended for us earlier this summer.  Life has been nice for Cody as he has relaxed and played video games the majority of the remainder of this summer.  Monday and Tuesday this week are big days for Cody.  He is doing something called Web Cares at his middle school.  He’s in 8^th grade now so he, as the “big man” on campus now, has volunteered to mentor and help the new incoming 7^th graders.  The 7th graders have a transition day 2 days before school starts so kids like Cody volunteer to help these new kids find their lockers and classrooms.  He has such a big heart.  He is always wanting to help people.  So the next two days he has to go to school for 5 hours each day to “train” on how to help the new 7^th graders on transition day.  We will see how he does since he is not on a normal schedule he is still in summer mode.  He is still on the staying up late and getting up late so the next week may be interesting.   We are going to work to get him on a school schedule this week or he is not going to even make it through the first week of school.

You may or may not be aware the last month or so has been big for us.  Cody was recently accepted and awarded a “Dream” from the Kansas City Chapter of the Dream Factory.   If you are not familiar with the what the Dream Factory is all about you should check them out they are an amazing organization.  Their mission is "To grant dreams to critically and chronically ill children from the ages of 3 through 18."  Cody was granted a dream to go to Disney World this October.  It was an amazing and humbling experience being presented with this dream for him.  At the same time, we were presented the dream we found out that there was one more surprise and honor.  We found out his story was shared with a local foundation that works with the Dream Factory here in KC called The Boulevard of Dreams.  The Boulevard of Dreams is a local foundation started by a family of a dream factory family whose son lost his battle with his disease.  His amazing family has taken his beautiful smile and beautiful memories to help many children in our area with lots of different medical conditions continue to smile alongside the Dream Factory. We are overwhelmed with gratitude for the smile they have put on our son’s face and the memories made and yet to come by granting his Disney Dream.

This past Friday night we attended a Gala for the Boulevard of Dreams which was an impressive event that’s sole purpose was to raise money for the dream factory.  It was an astounding and humbling even as being present.  It was fun to see all that the community does and overwhelming as Cody was the guest of honor.  The event started at about 5 PM and they had food and drinks and all kinds of events going on.   We were told to get there about 8 PM as there is just a lot mingling and the real introductions and presentation of additional dreams didn’t start until about 8:30 PM.   We go there and got settled in about that time.  Cody was a mess he was so nervous.  He knew this was about him and others and he doesn’t handle this level of attention very well.  We of course dosed him higher for the evening to handle the stress of the event.

Len Jennings from the local ABC affiliate here in KC was the MC.  He was super nice.  He came over and talked to us and told us what he was going to do and how to handle it all.  They wanted us to get up on stage with everyone but Cody was very scared of doing that so Len graciously said he had a wireless microphone and told us he would come to our table to talk to us.   

About 8:45  PM they started introducing kids.  These kids were there for the dream factory and didn’t know why.  It was so much fun to see them presented with dreams.  There was about 6 or 7 kids ranging from 6 to 17 years old.  One child, 6 years old, has spina bifida and her dream was to meet Princess Elsa.  So they presented her with an adorable Elsa dress and some other items to go along with her trip to Disney world.  One 17-year-old former dream factory child received a $5000 scholarship for her college career.  There were many dreams handed out on that night and every child had something different they wanted as their dream and each child’s life was affected by a chronic illness that made life difficult but through it all they and their families endure it all.  It is amazing the love that these people running the organization have for complete strangers like us.  Treating us as if we were their family too.  I wish I could explain the feeling of it all.

They presented all the surprise dreams and paused for a bit to do the auction of 6 special items.  An AMC package to see as many movies as you want to see for 2 for a year, a royals dugout suite package for a couple games, some trips/cruises to Disney, and a huge Caribbean all expenses paid trip.  All of them raised thousands of dollars for the organization.  The final item being the most adorable 12-week old full breed golden Labrador retriever.   He was so cute.  The two women who raised this puppy to this point were sad and happy at the same time.  The dog they had raised for the last 6 or 7 weeks was no longer theirs but they knew the dog was going to a great family as the buyer turned out to be their friend.  I think their friend fell in love with the dog while they raised it so at least the two girls would get to see their dog a lot.  The auction was a whirlwind.  I hadn’t been through something like that in a while and it was sheer craziness and fun to see the outpouring of support for the dream factory and the boulevard for dreams.

After they auction the Noah Tyson family got up and started telling Noah’s story and I couldn’t help but cry.  It is an amazing and sad story of a little boy who lost his fight.  He got to go to Disney world for his dream and unfortunately lost his battle with his disease a few months later.  This wonderful family turned his tragedy into an amazing event and organization to help other kids like his son deal with life-threatening and chronic diseases and disorders.  They give families a little piece of happy in what can frequently be a daily battle in life.  

They showed a nice presentation about Cody and his disease and what it means to his life.  Len Jennings then walked over and talked to Cody and asked a few questions.  He asked him what he likes to do.  He of course said he loves to play baseball, loves to watch Harry Potter movies, and of course loves Disney World.  It was a neat few minutes while the whole room cheered for him and of course Cody hated every minute of it.  He told me later his heart as racing and he was a nervous wreck.  I could see it in his face he was scared to death but he handled it well.

The hard part was over the rest of the event went on and they raised a lot of money.  It was great to see the community support as people pledged thousands of dollars in donations at the end of it all.  We headed over to again thank the Tyson family and they were wonderful people.  The love they showed for Cody and for us.  Telling us if we needed anything at all just to call them and they would help in any way possible.  It was amazing that these complete strangers have offered so much to us.  Mr. Tyson is a nurse so understood exactly what we were going through and understood the battle that he faces everyday.  I cannot express enough how much these people love what they do.  You can see it in their faces and in their actions when they talk to everyone.

The event was drawing to a close so we worked our way outside.  We waited in line to get our car from the valet.  We were talking about how Maddie could get a sticker for her future car while we were at Disney this year since she’ll own a car now.  There was a man in front of us in line and kept smiling as we were talking about our Disney trip.  He turned around to say “oh hey are you the baseball boy from tonight?”  I told him yes this is Cody.  He said “I used to play for the Seattle Mariners, but now I play for the T-Bones.”   Cody of course thought it was amazing just to meet him, but the guy took it one further.  He said “hey I know the Tyson’s I’ll get your info and send you some T-bones tickets, I’d love to have you out to a game.”  Again we were floored.  This guy didn’t need to say or do anything and he went out of his way to talk to Cody and invite him to a T-Bones game.   I don’t know if it will really happen or not but again we were just humbled by the love and affection complete strangers feel for someone like our son.

We have been so blessed through all of this.  It been overwhelming at times the number of people who have taken the time to see what they can do to help us or offer support.  These people don’t know anything about what Cody goes through and in some cases these people don't even know what the disease even means but they care enough to try and help in some way just because they want to help someone like Cody.

So far so good

It’s been a while since I have posted.  So what can we take from that statement?  Life has been getting easier, slower, more managed, or all the above?  Well the answer, a little of all of them.  School got out a few weeks ago so Cody’s days are much easier.  No tests, no homework, no PE, and no stress from teachers unhappy with their classes.  The daily grind is hard on all of us but especially hard on those with AI.

Our biggest worry lately has been whether or not Cody will be able to play baseball.  He’s been having issues getting through practices let alone a tournament weekend where he will be playing 3 or more games.  Near the end of May Cody had his first tournament.  We had a plan in place to get him dosed correctly and hopefully this would get him through the weekend.  Our tournament schedule came out and we had two games back to back Saturday afternoon.  We were really worried.  He hadn’t had to go through 4+ hours of baseball all at once since being diagnosed but all we can do is try.  We dosed him according to plan and he played his two games.  The games didn’t turn out good but Cody was fine once they ended.  The real test was the evening and the next day. 

Sunday came and we continued with the dosing plan.  Since we lost our 2 pool games we had to play the 8 am Sunday morning game.  It was just over 12 hours since we had finished playing the previous day.  He was slow to get out of bed, but frankly so was I.  He told us he was doing well and we went off to the game.  He again played the 2-hour game and was doing just fine.  He was still tired but again I think at this point he was tired from having to get up at 6 am that morning.  He had to have breakfast and get ready for his game.  He wasn’t really showing any signs of being low.  The rest of the day went really well.  He was even a little energetic and threw his bouncy ball against the wall for several hours on that day.

Why had the plan worked this time when it hadn’t been working for practices?  He played hours of baseball and never went in to crisis mode.  We think there are multiple factors as to why this is happening this way.  Number 1 being he is not in school he is not having to get up every day at 6 am to get ready for his day and have a full day at school.  Then on say Tuesday night spend another hour and a half practicing.  This made for a very long day.  The second factor being the fact that in a game situation you are not truly playing every minute of every game.  There are lulls in playing and it is not a constant go go go.  His practices are in constant motion so we think he gets more physical in practice then he does in a game.

Overall this dosing plan for tournaments has been working.  This weekend we had another tournament and he has handled it fairly well.  Though today he is a little less energetic than the last tournament.  Today he is a bit low, but I think it is because today’s game was a bit harder than the Sunday game last tournament. 

As a side note, I wish he had the body size and the energy to match his drive, passion, and love for baseball.  He tries harder than most kids we face and play with, but his poor body keeps him from being as good as the other kids on the field.  He’s facing pitchers 6 to 8 inches taller than he is and he gives it his all every time without even thinking twice about it.  He makes plays in the field sometimes that I am not sure others would make if they too were his size and had to deal with what he has to deal with on a daily basis.  Am I saying he is the best player on the team.  No, not by a long stretch.  What I am saying is given all that he is fighting in his life with AI and his growth issues he a pretty damn good player.  I am saddened by how much his body keeps him from excelling at a game he loves.  But I am also the proudest father in the world at how he tries his hardest every second he is on the field.  He never gives up and he never get down.  I see kids throw a fit because they get struck out or miss a fly ball or a ground ball, but not him.  He always runs off the field with a smile on his face no matter the situation.  He knows he did the best he can do and maybe next time is his time.  I am just hoping that over time his body will catch up to some of the other kids. I would love to see what he could do if he wasn’t fighting all these issues fighting against him.  I just hope we don’t run out of baseball years before his body catches up with everyone else.  This is why I work so hard to figure out how to keep him playing because no matter what he loves playing this game.  

Data data and more data

Sometimes things work and sometimes they don’t, but at the end of it we have more data to go on.  As a computer programmer I want to know all the data points and see if I can get it all charted out and make sense of it all.  The down side to me being a computer programmer it is not that simple, every person is different and every day is different.  The past week has been good and bad.  The days have been up and they’ve been down.  Cody has been doing well overall for the most part.  It has been a nice break.  We have, for the most part, been able to stay ahead of the race. 

Friday Jaime went to Cody’s outing to the shopping area and of course everything worked fine.  He hung out with his friends and there were no issues, but I am glad Jaime was there anyway.  It was a long day for him but he did great.  No issues at all.  After the field trip he had “practice” for the awards assembly show he is part of during the last week of school.  It’s a kind of talent show.  He has been staying at school for nearly 2 weeks now until 5:30 PM working on this show.  This Friday was no different.  He left there that night and hurried over to a friend’s house.  It was his best friend’s birthday party.  They went to see the Captain America movie and spent the evening at his friend’s house.  He wasn’t going to stay the whole night but things changed. 

We had been dosing him higher for the abnormal day.  There was a sleep over that was originally scheduled was scheduled as a tent sleep over and we weren’t comfortable with Cody doing that so we originally said no to the sleepover.  It rained most the night so the sleepover moved inside and we allowed him to stay at his friend’s house.  We continued to dose him high for the late night and waited for him to return home Saturday morning.

Saturday morning, he came home.  He looked a little low but we had no plans so we had him rest and we prepared his “weekend baseball practice” dosage.  He finished the rest of the day laggy but not bad.  He was just a little tired.  I actually think he was just tired from the last couple days.  The day was pretty much a day of no consequence.

Sunday came and we continued his dosage schedule.  It’s time for baseball practice and he’s ready to play.  I tried to run practice a little different today.  Not so aggressive and a little on the easy side.  You see we have a tournament on the 20^th – 22^nd and I don’t know yet how his body is going to handle a minimum of 3 games in a 2 to 3 day period.  So I thought if I slowed it down to a game speed and work him as hard as he would work in a game we might get a better feel for how he is going to do after an actual game.  We conducted our hour and a half practice by varying speeds and mixing it up.  The result actually worked out rather well.  I was able to get a baseline for a simulated game and he did rather well.  I hope this data converts to a real game, but we still have to factor in the stress of it being a real tournament.  There is no way to know but hope it all works out the way we plan it to go.

He came home after practice a bit tired, but again not so tired I thought he was crashing but rather just tired from the day.  He actually finished some homework and then began to play ball in the hallway for the next hour and a half.   We had dinner and he went to his room and played some basketball, and “worked out”.  He actually went to his room and did some sit-ups and lifting with his barbell he has for some strength training.  Again I felt like this was a successful test.  Now let’s hope it works on a bigger scale across a 3-day period.  I have contacted his physician to make sure this 1-day practice plan is acceptable to blow up to a 3 or 4 day plan for prep and recovery.

Again as a programmer it makes sense that this should all work, but only his body can tell us if it will work and only time will tell.

What used to be easy now is difficult.

This week Cody has earned the right to do what our son’s school calls an ABC event on Friday. Basically kids with good grades, and some other criteria, get to go to a shopping area about an hour from our house.  Seems like an event he should be able to do.  It’s just shopping and eating lunch at Panera Bread or Chipotle or something like that.  So very harmless. So what is the big deal why can’t he do these things after all he’s just a kid trying to be a kid. 

Therein lies the rub.  So let’s start with the trip to the shopping center.  It’s an area that has a Dave and Busters and a large number of places to shop or eat nothing wrong there.  They will be walking around for several hours.  Doesn’t seem too bad but if he has an issue the school is not required to give him his emergency shot.  This is a school field trip but the RN is not going on the trip.  So even if he carries his emergency pack no one will know how to use it.  So wait I said that wrong he is not allowed to actually carry his shot on him because he is “at a school function”, but the school won’t give it to him if he has an emergency.  The school is required to carry the shot but not actually use it if he needs it.

It’s likely nothing will even happen but what do we do if something does happen?  The shot needs to happen within minutes and the school won’t do anything but call 911.  Not to mention there won’t actually be school chaperones close enough to do anything, they let the kids wander around for several hours basically unmonitored.  It is going to be his 13-year-old friends that will need to make a call if something happens.  

So again do we just risk it, wait for the ambulance to get there and hope they know exactly what to do?  We know they don’t know what to do.  Our own EMS in our own city doesn’t know what to do let alone another city that we aren’t even sure if an AI person even exists in that city.  

So now my wife will take the day off, and to not embarrass my son (since parents don't go), she will just walk around the shopping area away from him and come help him if needed.  I am sure you probably think it is over kill but imagine a diabetic not getting Glucagon in an emergency situation.  Or better yet imagine the school refusing to use an EpiPen if one of their peanut allergy kids came in contact with some nuts and starts going into anaphylactic shock?  So he’s going to that field trip and we will just have to cover him there because the school won't.

There is some legislation that was recently passed in Oregon we are looking at to see if we can get it passed here in the KC area that makes schools have someone on site that knows how to give the shot.  There is so much we want to do and needs to be done   wish I could spend my entire day just doing this to make life easier on families with AI. But for now we will focus on keeping Cody in good hands.

Some of you make be thinking we are being too scared about it all, too cautious.  But my question to you would be what would you do?  I am not saying make that easy call from the cheap seats.  Really think about it.  What if your child had a disease that could kill him on any day at anytime?  Do you think it would change how you look at the world and their life in it?  What if today is the day God decides it is their time?  Did you do everything you could do not only to save him, but to give him a meaningful life?

Flow Charts and Graphs.

Fresh from the doctor’s office I feel prepared to slay the world.  It is amazing how I feel every time we get to talk to our doctor.   We are so blessed to have a guy willing to talk through all our questions and help us soothe our fears.  He has armed us with what I hope to be a better plan to allow him to live as a normal child.  There’s that word again, normal.  It’s as normal as we can hope for.

This visit was a good visit.  He answered a lot of questions but again opened up new avenues of doubt and worry.  He took some more tests and I am not sure exactly what I want to learn from them but we shall see what new things they find, if any.  Needless to say we are waited for that phone call on Monday to see if there is yet another thing we need to worry about.  The doctor suspects his thyroid levels may also be off.  If this is the case this may be part of the reason he is having so many issues recovering. 

We got the results back and he is within range on everything.  The questions marks are the fact that his T3 Levels for this Thyroid were toward the upper end and his Thyroid stimulating hormone were also on the elevated end, but again within range.   So this could point to mild hyperthyroidism.  Too much thyroid hormone; sometimes called "overactive thyroid;" acceleration of body functions; symptoms include increased heart rate, anxiety, weight loss, difficulty sleeping, weakness, and sometimes diarrhea. There may be puffiness around the eyes, and, in some cases, bulging of the eyes.   Oh goodie more symptoms to match the symptoms of his current disease.  As of right now he is actually within range, though at the higher end, so the doctor is going to monitor and watch for a change in his numbers.  According to the doctor with currently 2 pituitary diseases there may come more as we treat the ones we know about.  He is concerned that with his body taxed from the low cortisol he may also be having trouble recovering because he may have mild hyperthyroidism.  We will see…Yay for hyperthyroidism.  Darn it there is that sarcasm again.

OK so back to the plan for our attempt at a normal childhood.  If it would stop raining maybe, we could test it.  Baseball has been rained out several times since our last doctor’s visit.   We have a plan to dose him more the day before and during and see how he reacts this time.  Being a computer programmer by trade I am kind of a black and white type of guy.  I want to flow chart this stuff out.  The problem is it would probably look like this image.   The fact is we really have to guess. 

The more people I talk the more I feel like people just don’t get it.  People don’t understand what the big deal is and why he needs to be monitored so closely.  Frankly, they shouldn’t get it because this disease is so rare.

So let me try to explain it.  Imagine getting in your car to drive somewhere.  Imagine you had no gas gauge, no idea how many miles to the gallon you get, and no idea how much gas the tank holds.  On a normal day 12.5 gallons of gas will get you through the day.  But you don’t get all 12.5 gallons every morning but rather 7.5 in the morning and 5 gallons in the afternoon.   You plan to drive to work on just like every day.  No traffic no issues you can get to and from work, school, errands, kids events, and a few other things on that 12.5 gallons gets you through the day just fine.  That is your normal day.  Now what happens if you get stuck in traffic?   Your car burns twice as much gas normal, but again you didn’t know there was traffic today.  So now you have to stop and fill up again.  How long is that traffic going to last?  What happens if you get a flat tire while in that traffic?  Your car may now need more help.  See what we don’t know is when is that traffic going to back up.  When will there be an accident or a flat tire.  When will the car have other issues.   What if you need to go on a long trip how will that affect the car?  Oh did I mention that when you start everyday your tank is empty and needs to be filled before you can do anything.  If you didn’t drive it today you still needed to fill it but it’s empty again because just sitting in the garage or driveway it is burning gas.  It's burning gas while in the parking lot at work.  It's burning gas while you get the kids to their sporting or school events.  It's burning extra gas every time someone cuts you off or in the rain because it might be harder to drive in the rain.  On any given day you can run out of gas at anytime because you don't know how much you are burning and when you might need more.

This is how Cody body works.  We have to get him his 12.5 gallons of gas every day and hope there is no traffic.  In most cases we have to prepare his week as if we know there is an accident that is going to happen tomorrow.  If he has a big test, we have to dose him.  If he has baseball, we have to dose him higher.  If he has a tournament we may have to go even higher.  The hardest part is not knowing what is going to set him back.  Will a teacher "disciplining" her class because they are talking too much stress him out?  What about getting in front of his class to do a presentation?  Then there is the other end,  What happens if he goes to a friends house for a sleepover and they stay up to 1 AM playing?  All these are things that have caused him to go low and only a few of them we can predict.  The doctor swears he has AI patients that play competitive sports and live relatively normal lives; I just hope we can get there too.  

Only time will tell.

Today was fun.

Does sarcasm come through in text?  I don’t think it does.  We have been battling Cody’s AI since Sunday.  Today was the last straw so we took him to the hospital.  He has not been responding to his medicine to get caught back up.  The doctor asked us to go to get some blood work done.  He also intimated that is was maybe, possibly, could be a good idea to go ahead and go to the ER.  I say it this way because he didn’t really feel like Cody was in a life threatening state but he knew what it was going to take to get him back to normal.  He said this may speed the process up of healing.  He wanted to run a panel to see if his electrolytes, magnesium and several other things may be off.  If that was the case, then and IV of fluids may fix the issue.  IF not then well…. wait he didn’t say “if not” but I think I know what he was trying to do.

We took Cody to the ER.  It was busy.  It was really busy.  We checked him in at the front desk.  The lady at the desk took our information and looked at our son and asked “what is wrong with him?”  So my wife said “Cody has Adrenal Insufficiency, and he can’t seem to get back to normal.  He tired, foggy, unable to get going and out of bed.”  The ever so nice lady at the desk looked at my wife and said, “I don’t need a diagnosis I need to know what is wrong with him.” Umm we just told you what was wrong with him and included his diagnosis.  I was surprised at the restraint my lovely wife had while she explained again what is wrong with my son.  Which makes me wonder if a diabetic was having issues would they ever tell the diabetic “we don’t need a diagnosis”, even though they explained what was wrong.  Either way we got checked in.

We waited for about 45 minutes for the triage nurse to check his stats and get us in the real line.  Did I mention there were a lot of people there?  Being it was lunch time and we didn’t really have a plan in place or an idea of how long it would be I ran to get us some lunch.  We ate in the hallway.  I mean who wants to eat in a waiting room?  At least the hallway felt a little better.  We finished up and waited for our turn in line.  I think we picked the busiest day in the history of the hospital.  After about two and a half hours we got called back. 

They brought us in to the room and Cody got on the bed.  The nurse went through all the formalities and we discussed what was going on.  We explained our endocrine doctor wanted a specific blood panel run and go from there.  The nurse took Cody’s vitals again and left to talk to the ER doctor.  A little while later the ER doctor came in and talked to us.  We also explained to her that our doctor ordered a blood panel and told the story for what seemed to be the millionth time today.  The nurse looked up the order in their system and started a line in his arm.  The nurse was super nice.  She talked to Cody the whole time and explained to us that she would make it an IV line in case the blood work came back and they needed to do an IV or something else.  She wouldn’t need to stick him with a needle twice.  I had never had a nurse think that far in advance to not stick him twice.

The nurse took his blood in those tiny vials away and we waited for the next step.  The doctor came in to discuss that she had talked to our endocrine doctor.  She was up to speed to now; she knew what our doctor was trying to accomplish.  Find out if he is out of balance.  If not, get him the meds he needs.  Needless to say we waited again for the results to come back. 

As a side note to the story I need to share a moment I think my poor son has never needed to do.  They asked him for a urine sample and I am not sure he’s ever had to do it until now.  So I accompanied him into the bathroom and explained how to “partially fill the cup” and then finish peeing in the toilet.  I gave him the cup and turned around so he could take care of business.  He stood there a few seconds and didn’t start peeing.  I assumed it was because he was having some stage freight issues because I was in the bathroom with him.  Seconds passed and then all the sudden my son passed gas.  That’s right while he was trying to start peeing he farted on me standing behind him.  He started giggling and said “dad I don’t need to go.”  So I said “but you felt the need to fart on me.”  I told him grandpa would be proud.  We both started giggling like the child he is and I am still.  I had to take a moment or two to compose us both and we walked back in the room.  No one was the wiser as to what just happened, but I explained we needed a glass of water to “help” him go.

Back to the story, a little time went by when they sent in a radiology tech to do a sonogram on his abdomen.  Cody experiences abdominal pain when he is in crisis.   Most endocrine doctors understand this is a symptom of his disease and we know it is a tell for us to know he is not feeling well.  Much like the color change in his face, the blackening and bags under his eyes, or his inability to function.  However, the ER doctor not knowing exactly how to treat an AI patient has to rule other possible problems.  So they ordered a sonogram and they didn’t find anything other than he had a good lunch.  They checked his kidneys, stomach, gall bladder, and bladder.  The tech did mention she saw some fluid in his bladder so he was free to go fill that cup again when she was done.  She left the room when she finished and my son smiled at me and said he could handle filling the cup on his own this time.

We’d been there about 5 hours now.  The tests have all come back.  Everything looks good and his stats were fine.  So I am thinking what now, but the plan our endocrine doctor had this whole time finally showed itself.  The ER doctor explained that since everything else was fine they would proceed with a large dose (100mg) of liquid hydrocortisone (solu-cortef) in that IV line and he’d be ready to go home.  Wait that is it?  Give him a big does and send him home? Shouldn’t we wait to see if it works?  The doctor explained that within 15 minutes of a liquid dose of this size will bring him back to normal.  The doctor explained she recently had another AI patient that couldn’t walk because they were so “down” and this dose brought them back to normal within 20 minutes.

Already this evening since that dose he is feeling better, dare I say, back to normal.  His color is back, he had energy to do some homework, his smile and lift in his face is back, and he actually spent time with his sister in her room while they watched a movie together.  These are all signs of normal.

So what did we learn?  We learned that our “emergency shot” that we carry with us everywhere probably should have been used Sunday night or Monday morning.  He was at his worst point that night and barely alive.  Yes, I used the words barely alive.  We were, at that point, dosing him as if it was a major crisis by giving him triple his normal dose, but by Monday morning he still wasn’t bouncing back.   This shouldn’t happen.  Tripling his dose should bring him out if he is not too far behind, but in this case he was too far behind.  We have an injection we can give him just like the hospital did, but we still worry about using it. His emergency shot (100mg solu-cortef) is nearly 10 times his normal daily dose and just over 3 times a tripe dose.  We were talking to the doctor the whole time and he never suggested we use it.  What is confusing and concerning is it took three and a half days of tripling his dose for the doctor to decide to do an emergency size dose while we were in the ER.  Could we have done this Sunday night or Monday morning and solved the problem 2 or 3 days sooner?  Could we have been out of this and back to life on Monday and not Wednesday?  The only thing is the big if is when we do the shot we have to call 911 as a part of the protocol, so it is difficult to say he needed it at the time but looking back he could have used it for sure.

These are all questions and discussion points we now have for the doctor.  I will be giving the doctor a progress report tomorrow over lunch and just for safety we will have Cody miss one more day of school or go half a day.   We are very happy he seems to be back to “normal”.   There’s that word again.  How do we get to normal?  We’ve made it through another bad time with some answers but many more questions.   

Normal Doesn't Exist

I am not sure normal exists anymore.  There is not a day that goes by that I don't worry about my son.   Is today a normal day?  No today is not a normal day, and neither was yesterday nor will tomorrow.  Yesterday was baseball practice.  Seems normal as we’ve been doing it for several weeks, but it’s not normal.  We changed his dose for a long day of physical activity.  Not much more than a normal day but just a little more to get him through the practice.  This is how it works.  Well that is how it is supposed to work.

Not this week because nothing is normal.  If he was an everyday player for the Royals his dosage would be different because practice would be normal, but he’s not he’s a kid with AI and nothing is normal.  So we need to dose him more when he has practice and this time more now was not enough.  Sunday night he came home and was tired, but who wouldn’t be we just finished an hour and a half of baseball practice.  He ate dinner and I could see it coming on his face.  It’s a look we have become familiar with when he is getting low.  He gets a black ring under his eyes and his face almost loses its life.  His normal smile is gone.  That lift that he has on a good day is now a sag of a bad day.  Our son is a fun and lively child.  He’s funny, witty, active, and talkative, but not when he is starting to go into crisis.

This night he was going into crisis so we dosed him appropriately.  He said he was going to go relax.  He went in his room and watched some TV while he laid in bed.   We checked on him and he was tired but seemed to be OK.  I say OK, but only because he wasn’t showing more than tired and his color being off.  These are not panic things just worrisome.  It’s not time to panic until more things show up.

My wife got ready for her work week and I relaxed over the next couple hours.  For those who know me relaxed means I played some video games with my friends.  We checked on him multiple times over the next couple hours.  He still seemed “OK” and not getting worse; still tired but nothing more.   At about 7:45 pm I went to check on him again and he was sawing logs.  He was out for the night.  We decided to let him get his rest and skip his non-critical allergy medicine and try to sleep to get caught up. 

This morning we let him sleep in a little and he got a late start at school.  He still wasn’t functioning 100% so we upped his dose to get him out of his funk.  We decided to send him to school because he wasn’t terrible and he needs to be at school and not get behind, but looking back we should have let him stay home.  He went school and started his day.  Of course this week we are doing state mandated school testing.  Being high stress tests and high stakes the schools really pressure the kids to do good.  So had he not already been dosed high this would be a thing we would dose him high to help him handle the stress.  Being that he was already dosed high we thought he could handle it. 

We were of course wrong.   My son texted my wife about 1:30 pm today telling her about a stomach pain.  This is another symptom that he shows when he is in crisis. He went to the nurse and we asked the nurse to dose him again. My wife picked him up from school.   He came home and again went straight to bed.  For his afternoon dose we followed protocols.  Problem is he’s not recovering.  He ate dinner but again has just laid in bed all night.   Tonight he fell asleep about 7:00 PM.  We just woke him a bit ago to take some more medicine and let him go back to sleep.

We called the doctor tonight to see if we could/should do anything more.  He suggested yet another routine to follow.  Apparently his body just can’t catch up.  Tomorrow he will stay home and not do school.  I don’t know what this means for his testing but frankly I don’t care.  I am hoping he will wake up feeling all better and he just got to play hooky from school.   I just want a normal day.  It’s too bad they may not exist anymore.

So what is adrenal insufficiency?

Adrenal insufficiency is an endocrine, or hormonal, disorder that occurs when the adrenal glands do not produce enough of certain hormones. The adrenal glands are located just above the kidneys.
Adrenal insufficiency can be primary or secondary.

Cody has Secondary adrenal insufficiency.

Secondary adrenal insufficiency occurs when the pituitary gland—a pea-sized gland at the base of the brain—fails to produce enough adrenocorticotropin (ACTH), a hormone that stimulates the adrenal glands to produce the hormone cortisol. If ACTH output is too low, cortisol production drops. Eventually, the adrenal glands can shrink due to lack of ACTH stimulation. Secondary adrenal insufficiency is much more common than Addison’s disease.

What do adrenal hormones do?

Adrenal hormones, such as cortisol and aldosterone, play key roles in the functioning of the human body, such as regulating blood pressure; metabolism, the way the body uses digested food for energy; and the body’s response to stress. In addition, the body uses the adrenal hormone dehydroepiandrosterone (DHEA) to make androgens and estrogens, the male and female sex hormones.

Cortisol

Cortisol belongs to the class of hormones called glucocorticoids, which affect almost every organ and tissue in the body. Cortisol's most important job is to help the body respond to stress. Among its many tasks, cortisol helps

• maintain blood pressure and heart and blood vessel function
• slow the immune system’s inflammatory response—how the body recognizes and defends itself against bacteria, viruses, and substances that appear foreign and harmful
• regulate metabolism

The amount of cortisol produced by the adrenal glands is precisely balanced. Like many other hormones, cortisol is regulated by the hypothalamus, which is a part of the brain, and the pituitary gland. First, the hypothalamus releases a “trigger” hormone called corticotropin-releasing hormone (CRH), which signals the pituitary gland to send out ACTH. ACTH stimulates the adrenal glands to produce cortisol. Cortisol then signals back to both the pituitary gland and hypothalamus to decrease these trigger hormones.

This happens all day every day by a normal person day over day except in the case of my son.  His body doesn't produce any Cortisol so we have to manually dose him in accordance to some guideline.

What are the symptoms of adrenal insufficiency and adrenal crisis?

Adrenal Insufficiency

The most common symptoms of adrenal insufficiency are

• chronic, or long lasting, fatigue
• muscle weakness
• loss of appetite
• weight loss
• abdominal pain

Other symptoms of adrenal insufficiency can include

• nausea
• vomiting
• diarrhea
• low blood pressure that drops further when a person stands up, causing dizziness or fainting
• irritability and depression
• craving salty foods
• hypoglycemia, or low blood sugar
• headache
• sweating
• irregular or absent menstrual periods
• in women, loss of interest in sex

Adrenal Crisis

Sudden, severe worsening of adrenal insufficiency symptoms is called adrenal crisis. In most cases, symptoms of adrenal insufficiency become serious enough that people seek medical treatment before an adrenal crisis occurs. However, sometimes symptoms appear for the first time during an adrenal crisis.
Symptoms of adrenal crisis include

• sudden, severe pain in the lower back, abdomen, or legs
• severe vomiting and diarrhea
• dehydration
• low blood pressure
• loss of consciousness

If not treated, an adrenal crisis can cause death.

Some days are good.

Sunday was one of those good days.  We have been working closely to the doctor to figure out how to properly dose Cody for his days of heavy activity or heavy stress.  As I have discussed stress can be good and bad stress.  Stress as adults is easy to see.  Too many medical bills, tough day with work or a coworker with a bad attitude, a broken down car, or a child who is sick.  As a child stress is harder to find.   What child has over extend extended themselves on bills or a broken down car?  None of them do so how do we manage stress.  We have to look at what might or might not be too exciting or stressful in his life. 

This past weekend we “tested” the theory that we have been working through with the doctor.  It’s a theory because every child with AI is different and we are just trying to figure our child out.   We dose him higher when there are going to be long periods of stress or physical activity.  For this weekend he had a scrimmage with his baseball team.  It was close to a game and we “scrimmaged” for almost 3 hours.  He did very well on his new dosing scheme.  He was energetic throughout and came home almost like a normal kid. 

The good news is we learned to control one game on one day.  Now we hope to be able to extrapolate that out to a plan on how to deal with daily issues.  We still have to figure out unknown days that happen on the fly, but we may be closer to figuring out how to deal with those things for which we can plan.

Next week he has state mandated “MAP” testing at school.  This is going to be a test for him, no pun intended.   These types of high pressure tests can be stressful on any normal child let alone my son who has no control over his stress at all.  We will be adjusting him appropriately for these tests, and I hope it works.

It’s not an answer to all our questions, but rather a possible answer to a question that has no right answer.  At least we had a good day.

It's a life threatening disease

This is what my son has, Secondary Adrenal Insufficiency. It's a life threatening disease that no one understands and I can't explain. This article was written by researchers in Germany. It explains a lot but still leaves me wondering if there is more that can be done. It's a lot of medical jargon that is hard to read but still helpful to me.

The hard part for me and really anyone I explain this to is that we don't know when he will need more medicine and possibly go into a crisis. There is no normal dose. Well of course unless we put him in a bubble and not allow him to live his life.

It's the "Adjustment for stress, illness, life and surgery" that has us baffled. How does anyone know when the next time you will be stressed, excited, too happy, too sad, what day are you going to be ill next? How long is too long to play outside before it becomes a "prolonged exercise"? How long will it take for a teacher to be disciplining her class before it's too much "increased psychological stress" and he needs a dose or he might go in to a crisis?

This is the learning part. He takes a normal does everyday just to function daily. Just like your own body does you just don't know it. His baseline is 12.5 mg in the morning and 10 mg in the afternoon. This is just to be able to live day to day. You get similar dosages from your own Adrenal glands every morning noon and night. You just don't know it is happening. If your day gets crazy stressful your body gives you more. Cody's does not. Not only does it not adjust throughout the day it gives him nothing ever. He is broken completely.

Now let's add crazy, not crazy for a normal child but crazy for Cody. Let's say it's Tuesday and it is time for practice for Cody. Well that is categorized as prolonged physical activity so we bump his intake of 5 to 10 mg hydrocortisone. So depending on if that was enough, because there are many factors involved and it has everything to do with the fact that each patient is completely different he may be ok that night. Add to it a sleep over the night before and then we have the making of a crisis. We can do just what the doctor orders and still he goes in to a crisis. This was last week and it took him 3 days to recover and triple his medicine, which should be reserved for surgery and life-threatening illnesses. But I guess the doctor felt 3 days in crisis was life threatening.

Adrenal crisis—Acute adrenal crisis is a life-threatening condition, which will affect approximately 1 in 13 patients over the course of each year for many reasons. Despite established glucocorticoid replacement therapy, adrenal crisis remains one of the most common causes of death among patients with chronic adrenal cortical insufficiency. The symptoms of adrenal crisis include fatigue, nausea and vomiting, and hypotension and are thus non-specific, which can lead to misdiagnosis.

Quality of Life—In patients with adrenal cortical insufficiency, quality of life is significantly restricted compared to that of the healthy general population. However, this seems not to depend on the type of glucocorticoid taken or the frequency of hydrocortisone dosing. Instead, it appears that dose quantity and the non-physiological timing in administration of the glucocorticoid are responsible. So again it's about timing and knowing how much to give before you can even know that he is going to need his medicine.

The stress of it all for us is at times unbearable. I just want for my child to be able to be a kid. Can he go to a friends house? Not with out his emergency pack and a conversation with the family. Can he play in the back yard? Yes but not too long he may be pushing too hard toward an event if he has "too much fun". What about school and tests and gym class. Do we dose him there?

Well shit why does all this matter anyway. The doctor can just give us a plan. Why don't we just follow it? I mean don't the doctors know what to do? Secondary AI happens at a rate of 20 people per million (.00002%). In case you're wondering that is pretty rare. So no the doctor's don't completely know because there is not a single test available to do on a daily basis to check his levels, like a diabetic. We have to guess be cause every single patient is completely different, not a single one is the same. So we have to monitor him on a daily basis and plan a head. There are no last minute things in our house anymore. Want to go to your best friends sleep over we need to know 48 ours in advance to get him dosed properly. Honestly it is all a guess.

So what happens if we don't guess right? He goes in to a crisis (1 in 13 people go in to a crisis every year). Cody has had 2 in the past year. Some are mild and some are acute. Either way every crisis there is a chance we could lose our son. So if you want to know what keeps me up at night. This is what keep me up at night.

So again if you want to read the article feel free it is very interesting, but be prepared it is translated from German and written in medical speak so it's not super fun to read.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3928535/

Adrenal Insufficiency and my son

In 2014, we made an appointment for our eleven year son Cody to see his pediatrician. We were concerned because he was not growing like a normal eleven year old boy. He had been at the zero percentile on the growth charts for about 2 years.  He weighed about 60 pounds and was 4’4” tall.  He was way behind most his friends. His pediatrician didn't think it was a reason for concern. He ordered a bone age scan, that came back at about a year and a half younger than he was.  At the time of the scan he was 11 ½ and the scan show he had the bones of a 10-year-old child.   Our pediatrician said he was just a slow grower and to check back with him, if there was no improvement, in 6 months.

We waited the 6 months until his birthday last year in February 2015 and returned to his normal doctor.  The doctor examined him and all was “normal” in the doctor’s eyes.  My son was not gaining weight nor was he growing, but the doctor said he was still just “delayed”.  His friends were all shooting up.  He was now a head shorter than almost every child his age.  We left there again not feeling right, but not sure where to go.

In March of 2015 during our spring break, the mother of my son’s best friend, who is a nurse practitioner pulled my wife aside after a sleepover with the boys. She told us that she was concerned about Cody.  She said “Something is not right with him.  His color is off and he should be growing and gaining weight, but he seems to be losing weight.”  She said she didn’t think it was just that he was slow to grow. She believed there was something else going on.  

We contacted Children’s Mercy to make an appointment, but they are so back logged in the endocrine department that we couldn’t didn’t get in for our first visit until almost July.

The doctors at Children’s Mercy were concerned right away by his size.  They scheduled a growth hormone test as soon as possible.  The testing was hard on a 12-year-old.  It is a 3-hour long IV blood draw. They were coming in constantly to give him medicine and then draw blood to see how is body was reacting to the testing.  

A week later they called us in for the results and didn’t really talk about his growth hormone issue, which they admitted he had, but talked to us about a Cortisol deficiency.   They let us know that day that his tests came back and showed an unusual result.   They weren’t sure the results were correct because the test said his body was producing zero cortisol.  They were baffled by it and didn’t fully trust the test.  They asked us to come back in and do a focused 1-hour test on his pituitary/adrenal glands to show what his results really were.  We rescheduled for the next possible appointment.

We went back in about two weeks. This time they did a similar IV blood draw test that lasted over an hour.  They did several other blood draws to check other levels including his thyroid.   He has been a trooper through all of it to this point.  In an 8 week period of time they did 10 different blood draws.

They called us back a few days later on a Friday and said his cortisol level still measured zero.  They told us to IMMEDIATELY schedule the first available MRI on his head (which is where the pituitary gland is located).  They let us know that we needed to rule out a tumor of some kind causing the issue.  We got a scan scheduled for the next day on Saturday morning  at 7 am.  They let us know as soon as the results came back they would call us.  Of course being a Saturday no doctor was available to examine the scan so we weren’t going to find out over the weekend.  Finally, Monday morning at 8 AM sharp they let us know that his scan was clear with the exception of a tiny cyst that should be of no consequence.

So now what.  They asked us to come in that day.  In an almost life or death fashion they explained the solu-cortef.  Solu-cortef is a shot you give in an emergency situation, much like an Epipen for people with food allergies.  They gave us some instruction on how to use it but no real instruction on when to use it.  They were very vague.  They gave us hydrocortisone (a pill) to take 3 times a day and kind of rushed us out the door, at least that how it felt.  We were thinking we were just coming to help him grow.  We were looking for answers to why he was so small.  We didn’t know he had a life threatening disease.

We did get him on growth hormones eventually and that is working well.  He’s grown about 2” since he started taking those, but more importantly he has gained about 20 pounds in weight which is mainly attributed to his cortisol being back in his body.  His pep is back, his happy face is back, his charm and wit, his color is back, and his life is mostly back.  We didn’t know it but he was slowly dying.  His body was slowly breaking down and without the love of his best friend’s mom and the love of God we could have lost him.  We couldn’t see the small changes that were happening to him every day as we were with him every day.  I hard to see someone change slowly when you are looking at them every day.

Adrenal Insufficiency is such a rough disorder.  Have you ever felt stressed out? I'm willing to bet Yes. Stress on the body effects on all of your systems. When you're under stress, your body responds by releasing a hormone called cortisol “the stress hormone”.   As with my son’s case of Secondary Adrenal Insufficiency when he gets “stressed out” he doesn’t have the means to pump more into his body because his body doesn’t make any.  So we have to monitor him and try to predict when he will and won’t be stressed out.  It’s hard to do.  We have a plan but that plan can change on any given day.  Cortisol regulates so much more than just stress.

Cortisol has many function we didn’t know about until this disease.  Cortisol functions to reduce inflammation in the body. So if he gets hurt we have to give him more medicine because his body won’t help him heal.  If he goes unchecked his immune system responding to persistent inflammation can lead to slew problems: an increased susceptibility to colds and other illnesses, an increased risk of cancer, the tendency to develop food allergies, an increased risk of an assortment of gastrointestinal issues, and possibly an increased risk of autoimmune disease.  Overall it regulates Metabolic response, Immune response, Bone and collagen, wound healing, acts as a diuretic by balancing electrolytes and water, Sleep, stress, and depression.  This is just about half of what cortisol does for our body.  Cortisol is an amazing hormone in our body.

Not knowing what can cause an episode is what is the hardest thing about this disease.  Just today he is feeling “low”.  Can’t get enough sleep, dragging, and just not feeling well.  We don’t know why it’s just one of those days.  We let him sleep in after his dose for the morning and he got a couple extras hours and we are going to head off to school.  That’s just a normal day.

Another normal day happened this past fall.  My wife, as loving as she is, found a way to tell my son’s story to Chevy.  She sent an email to a customer service rep and prayed it would happen.  I didn’t know what she was doing at the time but I found out later that our baseball team the Kansas City Royals does a program where they have some kids, on Sunday home games, run out on the field with the players during introductions.  They are called Junior Royals.  My wife unaware of how to get my son in on this, to give him some joy in his tough life, contacted the sponsor of the event Chevy through their contact us form on the Chevy website.  That email went to an hourly employee in Michigan.  She is paid to read every email that comes in and she was so touched by the story she passed it on to her manager.  We later found out that the email went to 12-15 different people trying to figure out how to make this happen.  Since they are just the sponsor not the organizer of the Junior Royals Program it was a difficult task.  They finally got in touch with the Royals but there was no room left.  It just wasn’t going to happen, but somehow they made it happen.

Several weeks went by and we thought nothing was going to happen, but one day we got a phone call from a general manager at Chevy telling us they were touched by his story and what he had been through this past summer.  They worked with the Royals to get him on the field as a Junior Royal for the last home game of the year.  He was very excited when we shared the news with him.  He prayed for a couple weeks up to the event that Alex Gordon, his favorite player, would be playing that day and he could run out on the field with him.

The day of the event arrived.  We got there to the stadium early for the event as directed by the Royals.  We waited in an area where several other Junior Royals players stood for about 45 minutes.  He and I kept checking my phone for the lineup to be released for the day.  I could see the excitement in his face.  Slugger, the Royals mascot, came by to say hi. Finally, we moved to a new spot.   They moved us to the Royals Press room to wait to go on the field.  Again we were in there for a while as the Royals people explained how it would work.  While we waited he and I discussed that it was cool to be in the same press room that Ned Yost sits at after every game.  Again they moved us to the tunnel between the locker room and the field.  On one side you could hear the crowd on the other Terrance Gore, a player for the Royals, ran by.  Still I could see my son was on cloud nine.  That day Alex Gordon was playing DH so we found out that he would be running out with Shortstop Alcides Escobar.  My son was excited and disappointed (only because he loves Alex so much) but overwhelmed too.  You see we didn’t stress dose (increase his medicine) our son that day because we were so new to the process we didn’t think this day was going to be hard on him.  He seemed like he was ok during it all.  He ran out on the field that day with a big smile on his face.  He talked with the player and got his autograph.  A few of the players waved to him that day but he just ran off the field when it was over.  The other kids stopped and got autographs from the other players and he just ran off.  I don’t think he could handle it all that day.  I am sure it was stressful for him to be on that field in front of a sold out stadium and meeting players he idolizes.   

Anyway we went back up to our seats and watched the game.  The Royals won that day and we went back to our car happy and excited about the day.  Our son got in the car and just after he put on his seat belt he laid his head down on the center arm rest in the back seat.  We didn’t know it but he was crashing.  He said he was just a little tired.  We tried talking to him but he just said I’ll sleep on the way home.  I knew at that time something wasn’t right we been to a lot of games and he’s never wanted to lay down after any game.  I gave him some of my left over soda from the game and we told him to take a dose of medicine.  We gave him some water and I started the car to get out of the stadium in case we needed to rush him to the hospital.  He was still not responding well.  We had his emergency shot of solu-cortef if we needed it but I felt like I needed out of the stadium parking lot.  We got on the road and about 15 minutes after his dosage he started coming back to normal.  He was starting to be ok again.  We gave him one more dose and another 12 or 20 minutes later it was like the day never happened.  He was fine again.  But we knew at that time he just had a crisis or event.

What we didn’t know or understand is anything can cause an event.  That day was the most exciting day in his life.  He talks about it still, but frankly, un-managed it could have killed him too.  When an adrenal patient crashes their body is literally shutting down and without treatment it can lead to death.

Since that day we look at life even more different then day 1 of his diagnosis.  What is he doing today, and how do we handle it?  There needs to be more education and awareness.  This may be a rare disease but there are people not diagnosed every day that need to know.  This picture embodies his spirit and his love but at the same time shows his new life with his emergency pack over his shoulder.

A couple weeks ago a different general manager at Chevy called us back to ask how our son Cody was doing.   They were so touched by his whole story that they still use him, his story of a junior Royal, and his disease in meetings as examples of how they can the community and reach out.  That got me thinking is there something more I could be doing?

I am not an expert I’m just a parent, a computer programmer by trade.  I’m just looking to get some awareness out there.  Trying to do whatever I can to help.  So I'll use this blog.  Not only to tell his story but maybe relieve some stress that we live through every day.