Summer 2013 - Thanks Gillette!

Sam has been having a great summer. We started with an appointment with Dr. Healy and it was decided to skip surgery this summer! We are keeping the IM nail in his right femur for extra support for now. The femur is still curved a bit forming a Shepard's Crook deformity. We will let Sam's body work on remodeling that for now.  Had to  laugh when I received the transcript from that visit. Dr Healy had written Sam should have an active but safe summer. My continual struggle is where is that line between safe and being a kid.

That evening we were able to participate in Dream Night at the Minnesota Zoo. We had a great time at the Zoo. Sam was to busy looking at where he wanted to go next to look at the camera!

The next week we were able to meet with Paige and and Rita  from Gillette's Public Relations department so they can get to know Sam a little bit and see if his story can help someone else find the great services of Gillette. They also gave Sam a great little goody bag with a bear, book, and back pack. 

Then Gillette gave us tickets to a Twins game at the end of June. Not only tickets, but Sam got to lead the running of the bases after the game! We made a day of it and took the train from Mall of America to the game.

Our last bit for this summer was participating in Miracle Treat Day for Gillette. Gillette is a Children's Miracle Network hospital, the only one here in MN. Once a year Dairy Queen hosts a Miracle Treat Day where they give $1 of every Blizzard sold to CMN which locally goes to Gillette. In 2012 they raised over $250,000 for CMN. Locally our DQ had a goal of selling 1,000 Blizzards.

There will be more about our summer to come. This is just the parts made possible by Gillette. Though ultimately, all of it is due in part to the great care we receive at Gillette that has enabled Sam to be the kid he wants to be with out to many limitations!

Little Guy with a Big Story

Miracle League and Update

A new season of baseball with the South Metro Miracle League has started. This is his second year playing. He was so into the game last night it was fun to watch! A big accomplishment was that he stayed on his legs the whole game, no retreating to the wheelchair. Last year, he was healing from the bone graft at the start of the season and then the femur fracture near the end. The fracture also impacted the fall ball he played. We are grateful for some equipment he was given through Freecycle. I should have gotten a picture of him batting last night. Sam was wearing the batting gloves, sun glasses and batting helmet, decked out for moment! But he hit the ball right away and I didn't get a chance to.

Life has been up and down for us since a last regular update. In December, he had a serious bout with headaches. For a week it was like before his Chiari decompression surgery, headaches coming on with activity that improved with laying down. The second week it became constant. After the second trip to the ER, he was admitted. Full MRI of spine and skull found possible problems with CSF flow over the site of surgery but more tests need to confirm that. He is doing better now so we are watching and waiting.

His femur fracture of last July is been slow in healing. Last xray was in January and he still had a bit of healing to do before IM nails could come out. We will xray that next in June. I wanted to wait until school was out before doing the surgery anyhow. Sam had PT with his legs until about December than he kind of plateaued. So we decided to take a break and just work on things a home.

His newest development is a right clavicle fracture. Two years ago he hurt his shoulder doing an obstacle course in preschool. Dr Healy thought it a fracture but not much was to be done with it. The last few months I had notice the right collar bone was looking different than the left with a bump towards the middle. End of April, Sam was bouncing a beach ball hard as he could to make it go high as possible. All boy, right! and his shoulder started hurting. Some Tylenol and it was ok, just tender through the week. A week later he stumbled walking into a bedroom and hurt it much further. A trip to ER didn't reveal a fracture at the time, but a bone lesion where there wasn't one before.  They ER docs didn't know what to do about it. Gave Sam a sling and told us to follow up with his Gillette doctors. An xray 11 days later revealed that there was indeed a fracture of the lesion and his body is beginning the healing process. We are going to wait and see how his body heals it.

This development is so discouraging because until this point we had not seen new lesions forming. What he had was fairly stable and healed after fracturing. When we Dr Healy next month, we will do more xrays to check for other lesion growth. We have been in contact with Dr Michael Collins of the NIH to try and define what is going on. Maybe it is time for a nuclear scan?

Gonna live life til we're dead

I just finished reading Donna's story. She is a beautiful little girl, just a few months older than my Little Guy who fought a courageous fight with pediatric cancer. In the second to last installment, Choosing Hope, Donna's mom tells of sending a prayer every day to the Rebbe's grave: "May she live until she dies."  This morning I realized that a similar line was in the song "The Fighter."  I have found that song so inspirational and am working on a slide show of Little Guy's story to go along with the song.  I pray that I can teach that to my kids and help them to live a life of hope; to live until they die.

The phrase "treasure in earthen vessels" is coming to mind. We have bodies that can be so frail and succumb to cancer or fibrous dysplasia, but life is such a treasure. Little Guy shows that every day rushing head first into enjoying everything. It is frequently said by anyone that works with Little Guy that he has one speed: Fast! It is so hard at time to see him struggle with something and have to stop. The ironic thing is that other's don't see this side. They don't realize when he has found a way to play sitting down it is because of the fatigue. Like at his last Den meeting, he became the weapons vendor sitting in the garage and the other boys kept coming to him for more. Yesterday we snuck away to McDonald's after his Bible class. He played in the play structure, but it was short lived and soon was ready to go home. Despite what he is feeling, Little Guy is finding a way to live life and have fun and that is what others are seeing in him.

2 Corinthians 4:7-9, 17
⁷ But we have this treasure in earthen vessels, that the excellency of the power may be of God, and not of us.
 ⁸ We are troubled on every side, yet not distressed; we are perplexed, but not in despair;
 ⁹ Persecuted, but not forsaken; cast down, but not destroyed;
¹⁷ For our light affliction, which is but for a moment, worketh for us a far more exceeding and eternal weight of glory;

Sam's disease has an official awareness ribbon! About the design: An old medical saying is “If you hear hoof-beats, think "horse." This means, that the most likely explanation is often the right one. But rare diseases are the zebras of medicine, a point that medicine and the public needs to grasp. The National Disease Day organization in the US has promoted the use of zebra stripes and this feature of our ribbon connects the FD/MAS community to patients, caregivers and advocates for the other rare diseases who struggle along-side us. Zebra stripes can be any two colors. White is symbolic of bone disease. Orange features prominently in the logos of the Fibrous Dysplasia Foundation, National Organization for Rare Disorders and other international organizations working to promote the welfare of FD and MAS patients. Purple references chronic pain, an invisible feature of FD that needs attention among medical personnel and the broader community. Yellow is symbolic of optimism and hope. This is what motivates patients to persist in their efforts to live full lives and motivates patients, caregivers, medical professionals and supporters to bring attention to and work for a cure for the rare diseases of FD and MAS.

You can see more about it at http://www.fibrousdysplasia.org/index.php?page=6 

School has started. We had a meeting with 9 adults to make sure everything was set for Sam to go back to school. That they knew what he could and could not, or more accurately was not supposed to do. One thing they asked me to do was make something to show the other first graders what was going on with Sam and how to best play with him. I did this power point presentation for this. There is no sound for this and it goes kind of fast for reading some of the slides, sorry.Use the pause button.  One of these days I'll make a full fledge presentation set to music.

The Fighter

I found the song for Sam that sums up what he does:




If you fall pick yourself up off the floor (get up)
And when your bones can't take no more (c'mon)
Just remember what you're here for
Cuz I know Imma damn sure

Give em hell, turn their heads
Gonna live life til we're dead.
Give me scars, give me pain
Then they'll say of me, say of me, say of me
There goes the fighter, there goes the fighter
Here comes the fighter
That's what they'll say of me, say of me, say of me,
This one's a fighter


Sam's a fighter!