Cheyenne Baby!

What an amazing opportunity we had to go to CBR finals in Cheyenne. Western Wishes was great and helped us get there! CBR provided us with amazing passes that got us into the greatest show there was, plus behind the scenes. But first we got to meet Tuff Hedeman. This guy was so nice, and very sweet to our little boy! Carson says " I like the Tuff Cowboy!" :)

Some awesome people from Colorado raised over $19,000 for Western Wishes. Wesley Silcox from Payson, Utah came out to take some pics with Carson and Rigger( a western wishes boy from Wyoming)

Blake was  silly and loved being with his dad! 

Carson wanted to ride the bull... what better way to do it, than with out a 3,000lbs animal chasing him! :) 

Carson had NO FEAR of the bulls! As you can see the bull was ready to show him who is boss! 

Thanks to Sara from the CBR we got to go see the bulls that were coming up to be rode! AWESOME! 

How they went to town one day! PJ's and Cowboy boots for Tuff boy! :) 

The First of July the Carter family invited us to their sons memorial bull ride in Heber, Utah. They gave Carson TJ Carter's glove, this was a custom glove, that Carson loved! Carson wanted to take it with us to the rodeo! He doesn't understand the importance of this glove, but I was happy to take a little piece of a cowboy with us. The Carter family has been so sweet to us, allowing Carson to share such a special night with their boy. One day I hope Carson understands this gloves special meaning. It also is very nice to know there is just one more watching over him as he fights this battle. Carson has a heart of a cowboy and could make it if he wants... my heart as a mom says don't let him, but I also know if there is a passion I can't stop it! 

Behind the scenes at the Cheyenne Frontier days rodeo! Playing with the other kids! 

A trip we will never forget! A trip we will cherish forever! 

This is such a true song! As we have been on this fight for Tuff boy's life for a year and a few months now, we have found out who is there, and who is not! It sure does amaze me who it was! People I never knew before have stepped up, and some I knew for a life time haven't. It shoes you who really means they will be there through thick and thin. with 2 years to still go, I am sure we will loose a few more off the ban wagon, but that is okay, because we only need + people! And some day I hope we can re-pay those who have been there for us. And pay it forward to so many that have done so for us! 

"Cancer changes your life, often for the better. You learn what's important, you learn to prioritize everything in life, and you learn not to waste your time. You tell people you love them, you learn to a deeper meaning of love. If it wasn't for the downside, having cancer would be the best thing and everyone would want it.' That's true. If it wasn't for the downside."

Our "normal" isn't the normal, normal... it is a "rare" normal!

I am convinced this kid is out to have the most rare conditions and stump doctors to no end! I am hoping 3 strikes he is out, Bronchial Malaysia, Leukemia and now muscle mystery!?!?!

Tuesday he had a EMG or...Electromyography (EMG) is a technique for evaluating and recording the electrical activity produced by skeletal muscles.^[1] EMG is performed using an instrument called an electromyograph, to produce a record called an electromyogram. An electromyograph detects the electrical potentialgenerated by muscle cells^[2] when these cells are electrically or neurologically activated. The signals can be analyzed to detect medical abnormalities, activation level, recruitment order or to analyze the biomechanics of human or animal movement.

Just talked with the doctors waiting for Carson to come out... 50% weakness in left leg don't push activity and need to follow up with our doc in a couple weeks repeat test in 6 months... Right leg was 30-40% decrease all lower leg could be a muscle thing all on its own not sure till we do another test! Just another condition to follow and watch to see if chemo has caused this or if it is something he would have had on his own!  this poor kid can't catch a break! Thank goodness he is Tuff about it all and even told me he was excited to get his superman medicine "aka sedation" medication!

So what do we do from here? Well we are not sure. They will run yet another test in 6 months. This is not a pleasant test and they will sedate him for it. We need to have a second test in order to know where he is trending! We will see his neurologist in October. 

This is his medications! This is a typical dose for him on steroids and some times we add 12.5 pills to this!!!!!!!!!!!! It is always a challenge to get these into him but we try our best to bribe him into taking them! What else can we do right/>

Here is what the test is! They had to "ramp" from a 7-8 to a 17! for him the doctor said it wasn't normal to have to test this high for kids his age! 

Being BRAVE!!!

Don't lose hope. When the sun goes down, the stars come out

Yesterday Carson, our Tuff Boy had yet another surgery to explore and figure out what to do with his airway! Of course we still do not have answers. Our Doctor is hesitant on what to do with him. It is rare to first have this condition and second even more rare to not out grow it. As our doctor said "He is his own normal, he is Carson"! I think he hit it on the head! Yes he is his own normal and he will stump the doctors as much as possible! We were really praying and hoping for a miracle and that we would have a good plan of action, it didn't turn out that way. Our Doctor, Dr. Meir wants to take Carson's case to a conference and talk with other doctors about him. Brant and I also would like to talk to other doctors since the surgery that is suggested is a BIG one, and would require us to travel, and be in a hospital for weeks! So we are sending his information to CHOC(Children's hospital of Cincinnati) and CHOP (Children's hospital of Pennsylvania).  

We are not sure if this is something he can live with and just be limited to what he can and can not do, or if it will worsen as time goes on.   This pictures are kind of gross, but give a great idea of what is going on. The first picture is his Bronc tubes and you can see the left bronc tube is much smaller than the right one. almost 1/4 the size. it is collapsing but it is also doing well to open back up on its own. 

On a good note... We got in touch with a foundation called Western Wishes! The organization is amazing! I am so impressed with them! They got our Tuff boy into riding a sheep and made him a little celebrity with the bull riders that night! He told us he is going to ride sheep, make money, enough money to buy a boat! :) Big Dreams for such a small guy! 

Just like the boys' he thought he was just the same as all those bull riders! :)

I love this picture of him! it is such a sweet moment, and such an amazing man that got on the bull with Carson and was so sweet to him! Tyler Farris is his name! 

A vest that all the bull riders signed for him! 

Him tipping his hat to the boys! :) and wearing the riding glove! 

Getting on, who needs their mom, he is Tuff and for sure wasn't needing my help! 

Being a goof ball! :) this is what keeps us going. He can always make us laugh!

We can no loose hope! No matter what I will always have hope, till the day 10 doctors tell me there isn't any! I know in my heart we can beat this, and will! We just will have one bumpy road and journey along the way! The climb song is such a great song, I am finding music to be therapeutic to both Carson and I! Finding songs that mean something and singing them with him, gives him and me hope! :)