The good and the bad

Every once in a while we think we have things figured out with my son and his disease.  This week was one of those weeks.  If you read my post from Monday you saw we gave him his emergency and I can tell you it helped him but not like we thought it would.  I was actually excited that the doctor had given us the okay to use his shot.  I wasn't excited to give it but the thought of not having to go to the ER is exciting.  No exposure to sick kids.  No hours of waiting.  No explaining to 7 different people what he has and what is wrong.  Best of all no being asked to leave the room so they could ask my son if I or someone in his house is abusing him or anyone else in the house.  This is my favorite part of going to Children's Mercy.  I'll add they don't ask My wife to leave when she goes by herself.  I am going to just leave it at this because I know why they do this but it upsets me they only seem to pull out men when it comes to asking about abuse in the house.  I will gladly leave every time though because I've never laid a hand on my children and never would. So profile the fat scary looking guy all you want, but the grumpy jacket may give away I am just a teddy bear.

Anyway back to Cody.   The shot we did on Monday seemed to help a little but like I said not how we had hoped.  We waited one more day and kept up with his dosing.  On Wednesday, we saw his doctor and he was actually impressed with his growth in height and weight.  Cody is a 1/4" from 5'1" and 103 pounds now.  We discussed Cody's current state and how to proceed.   We, including the doctor, actually believed he was improving.  We finished at the doctor and headed home just in time for rush hour.  We got home and decided we were too tired too cook so we loaded the family up in the car and went to Original Pizza in Blue Springs.  At this point Cody still seemed okay.  We finished dinner and hit a Pokémon stop and headed home.

We arrived home about 6:30 and Cody went to "watch an movie in his room".   About an hour later I went to check in on him and he was sound asleep on his iPad.  Face planted firmly on the screen and headphones on his head.  I tried to remove them without waking him but it was an impossible task.  Since I woke him we gave him his growth hormone shot and sent him back to sleep where he stayed until 9:15 am the next morning.  Prior to him sleeping we talked to his doctor (who was surprised to hear from us) and he said give him quadruple his normal does in the am and if he's not better by 1 or so take him to the hospital for fluids and IV of Solu-cortef.  Anyone not following me on Facebook want to guess what we did at 1 pm today?

That's right we went to the ER.  We got in the car and headed to Children's Mercy hospital.  Low on life, low on energy, low on drive, lethargic, and well just not feeling right it was finally time to go.  This was a fun/learning visit for Cody.  Cody has needed to use his big voice not only to the doctor but to us of late.  We need his input we need to know what is going on to know best how to treat him.  This whole event could have possibly been avoided if he would have spoken up Saturday night when he felt tired, but didn't want to leave his cousin's overnight birthday party.   We could have dosed him higher or maybe taken him home, but the latter he definitely didn't want to do so he told us he was doing fine.  I could see in his face he wasn't doing fine but I try hard to trust his feeling and his words, but also realize he is still a kid who wants to just be a kid.  So he partied on that night on his standard double dose.  Which we know should have been higher.  (Hind sight...seems like there is a saying there.)

The nurses at the ER got the line started as you can see to the right.  Checked his sodium levels and started a bag of fluids and Liquid Hydrocodone.  They had a cool machine doing the pumping and he was feeling better within minutes.  About 10 minutes in I could already see a change in color and in attitude.  He was getting that Murrow sense of humor back.  It took about an hour for the whole thing to run it's course but 30 minutes in the Hydro was all in.  He was almost a normal child again.  It is utterly amazing to see him go from down and out to a live before your very eyes.  The ER Dotor walked in and even said he looked amazing compared to when he walked in.  She said she was going to start his discharge papers because clearly he's better, even though the machine wasn't actually done.  The nurse arrive just in time to un hook him and he was ready to go home.





This is him pre and post medicine.  He was a whole different child.  He stayed up until 10 PM tonight playing video games on the computer and wanted to eat some ice cream we have in the house.  I know this all sound strange but for almost 5 straight days all he wanted to do was sleep, and now he is smiling and acting like the Cody we know.

Our problem is now why didn't the shot work.  Why did it not bring him back in the same way the IV does.  This is our 3rd maybe 4th (i've kind of lost track) crisis in 6 or 7 months.  Last one in September and at Children's they did both Fluid and Hdyro in IV.  The previous in the summer was at St. Luke east and they just did an IV port to do some blood work.  Once the blood work returned normal he was only given they Hydro via IV.

In all cases his sodium and other dehydration numbers were spot on normal so this was solely an Adrenal Event.  But why did giving him Hydro in IV form help but giving the EXACT same dose in the form of a shot in his leg do nothing in comparison to the IV.  I am not trying to minimize, but it was like giving him the shot was like pennies for his collection versus giving him rare 1800 silver dollars with the IV.

Needless to say we are happy to have our son back to normal, but it sure would be nice to get some answers to these questions.  I am a computer programmer I need to do some flow-charting to figure this shit out.  Why do some things wor and some don't and why don't the doctors know when you ask them.   We keep hearing it is a kid by kid basis.  Is that all we have.  Wait and see what helps and act from there.

Step 1 is get Cody to tell us how he feels.
Step 2 Act in some way shape or form to help him.

First time sucks.

Cody had to stay home from school today because he was low. He was low all day yesterday after spending the night at his cousin's house. He laid in bed all day and was completely in crisis. He didn't want to do anything but lay under the covers and barely watch TV. Prior to staying at his cousin's house he was already doubled because he was just on Christmas break and after long breaks from school he needs more medicine to recover from the abnormal schedule.

We bumped his meds yesterday, today and then tripled his meds tonight. Nothing has seemed to help so I called his doctor. The last two times this has happened our doctor would have told us do a triple dose Cody for 2 or 3 days. During those crises none of that helped, it took a visit to the ER for an IV of his medicine to get him through these type of low crisis times (essentially giving him his emergency shot only via IV instead) .

For the first time since diagnosis our doctor told us to give him his emergency shot today instead of waiting 2 or 3 days for the oral medicine to kick in. So tonight I gave him his emergency shot for the first time. Of course he hated it and so did I. The needle they have us use is too big in my opinion (too thick). We need a different gauge. It is a 21 gauge and I am thinking he needs a 25 gauge. Anyway it hurt him bad and I could tell it did when I stuck him with it. I'm no rookie at this either I have given myself a minimum of 1 to 2 shots a week for the last 4 or 5 years. It hurt because the needle is too think.

We go for our quarterly visit this week so I'll be asking the doctor about that change needle size, but the shot did help. He is starting to bounce back. He is not completely recovered but in the last hour or so since his shot he is much better than he has been in the last two days of giving him double/triple his medicine. I don't know what it is about him and his oral medicine when he is low; the liquid works almost instantly. Obviously its about absorption but still taking triple should bring him back to normal and it doesn't.

We have noticed that with a shot he has not recovered quite as quickly as an IV with his medicine, but I believe that is the difference between straight in his blood versus in his muscle then adsorbed in to his blood.

I am glad the doctor let us do the shot sooner than normal as he gets to get back to life sooner. Time will tell once tomorrow morning gets here and that shot has had its time to get completely absorbed in his body. But it really sucks that Christmas break, two days of school, and a night at his cousins house has caused this crisis.

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.