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!

One Week Ago.....

Friday July 6. Daddy took us all, except Aric who was at a movie with a friend, to DQ for some lunch. We got back home and daddy went right in and laid down a bit before going to work. I waited on the kids to get out of the car on the hot summer day. Once in the house Sam called dibs on the computer. I went up to the bathroom. It was to hot a day to leave my hair down. Then came the scream. Apparently Sam ran to go to the bathroom quickly before someone else could get the computer, and tripped on the stairs. Richard and I ran downstairs and found him on the bottom two steps, screaming and saying "I think I broke a bone." Richard moved Sam to a chair and looked at his leg and said there was a bulge and thought it was broken. He called off work and we decided to call for an ambulance.

The ambulance took us to Regions. Sam liked me to hold his leg. IV was started in the ambulance and pain meds started and continued in the ER. In the ER we were put in the same room that 2 years ago Sam's oldest brother was put in after a tree fell on him while we were at a family reunion. I had to fight back tears when I realized this. More meds, nurses and doctors came in. One doctor took his history down and was amazed at how long it was. We finally went for x rays. They took me to a waiting area that was two rooms and down a hall from the x ray room. I could hear him screaming as they positioned him for the x rays. When they finally came and got me and we went back to the ER room, the nurse told me that Sam said, "That was horrific!" when it was over. It was broken right where the bone graft was. A lot of waiting and finally I was told we would be admitted to Gillette and a Dr. Ogilvie was going to operate first thing in the morning and put in a plate. That didn't sound right to me.

When we got up to our Gillette room, I talked to the nurses and told them what I was told of the plan in the ER and that I was not happy with it. I wanted Dr Healy's input before surgery happened. A couple hours later, the nursing supervisor came in and told me that she talked to Dr Healy and that he was able to take over the case from the other doctor. Dr Healy would come in on his day off and do surgery! I was so relieved.

The night was about keeping Sam comfortable. At one point he wet the bed and that was a rough change of bedding with 5 people helping. The morphine he was being given via IV was starting to make him dizzy. He would grab the sides of the bed and scream for everyone to stop moving the bed.

The next day surgery was delayed twice, first Dr Healy pushed it back from 10:30 to noon and then an emergency came in and pushed it back until about 3. I think it was close to 4 when they finally took him back for surgery. I had been playing a bedtime relaxation album I had on my old phone for him and he took it back to the OR with him. It was the first time I was not able to go back. I was told by a couple of people afterwards that they were impressed with how much it helped him and how relaxed he was going off to sleep.

The surgery went well, though it did take a couple tries and bent nails to get through the sight of the bone graft, but they finally did without opening the sight of the fracture. Drugs were switched to help with the dizzy spells. We finally went back to his room. by bed time he was able to start on oral meds and other then another wet bed had a fairly good night.

Sunday was spent keeping comfortable. Sam feel asleep right as PT came by and took a 3 hour nap so it was put off until the next day. Monday he seemed a little worse off. He took three different naps and hated PT. Two years ago PT was focused on me being able to safely move him. Now he is bigger and my back is worse off so PT was focused on him getting up and walking with the walker short distances to be able to move to bathroom and bed and such. By the end of the evening his temperature was up to 102, but it fortunately was short lived. It did explain why he was so out of it for a good portion of the day though.

Tuesday we did one more PT and finally was able to go home. Once home he spent some time downstairs Tuesday. It took us about a half hour to scoot up the stairs. Wednesday and Thursday he spent the whole upstairs in bed. Friday morning he finally seemed to turn the corner and improve. He asked to come down stairs and did not need pain meds as much.

June 12 we had seen Dr Healy and Sam was cleared from most restrictions. I was finally beginning to let down my guard so to speak and think we were in the clear. I was even thinking about getting him a two wheel bike. Now all that has changed. This post has taken a couple of days to write out. Yesterday, 12 days after the accident, he realized, with tears, that he can't go to a water park now. I assured him it was just for a little bit.

Process

Life has been busy, a good busy with activities and all that goes with four kids in a family. I think I probably said this in a previous post. Things are changing a bit though. March marks time for the 6 month follow ups with endcornology and orthopedics. Also Sam has had a few headaches of late so I made an appointment with nuerosurgery too for the follow up.

In his last conference two weeks ago, I met with Sam's classroom teacher, and three other teachers who work Sam through out a week. There is also a para, who does not attend conferences. General concensus is that sam is busy and innattentive and it is causing problems acedemically and socially. The week before I had been in the classroom and was shocked to see the level of his distractablility. I emailed his teacher after this and in her reply she said, "Sam is in constant motion and at this time exhibits little attention to task. He is not yet working independently." So we are adding another doctor to all we have seen at Gillette, nuerodevelopmental ped.

In process.

.........

This was originally written the end of February. In process refers to a women's discipleship program I participate in at my church. February's theme was In Process. Kristi Kerr spoke about how we are in process, growing as a christian. It really spoke to me as this has been a long process we are on.