I'm Holding On...

This weeks writing prompt from Ellen is I'm holding on. When I first saw it on Sunday November 2, I thought of the sermon I heard that morning of letting go of our worries and burdens. We all treasure something and our hearts follow that treasure.  As we prayed, we were directed to open our hands and let go. I let go of my worries of Sam.

See I knew that morning there was a check up coming the next day. I was wondering  worrying (you see there is a whole lot of words to make it sound better, but it is still worry) what would happen at this appointment. Would I walk out bombarded again with multiple appointments to follow up on? Or just a see you in 6 months? I knew as I opened my hands that morning I was going to need to repeat this exercise again many times over.

Well the appointment was the bombarded one. Sam's tibia has a lesion that has grown to the point of being a fracture risk. How should it be reinforced?  Sam's gait has not improved. In fact his ankles are turning in and his right foot is turning out at the same time. I saw these things before hand. Well not the bone lesion, that took an x ray to see. Sam's developmental adaptive PE teacher saw the gait issues too.

After much discussion we left with a plan. Sam has been modeled for UCB orthotics that he will get in two weeks. After giving him a few weeks to get used to them, he will visit the Gillette's Gait Lab. Just after the holidays we will meet with our doctor again, go over the information from the gait lab and decide what to do. Surgery is likely. That tibia broke almost 4 years ago. We do not want it to happen again.

So what am I holding on to?

In that sermon mentioned earlier, some questions were asked. What do you seek first or treasure? How do you trust His care? Treasure Him.

I Peter 5:7 "casting all your care upon Him for He cares for you."

Philippians 4:6,7 "Be careful for nothing, but in every thing by prayer and supplication with thanksgiving let your requests be made known unto God. And the peace of God which passeth all understanding, shall keep your hearts and minds through Christ Jesus." The italics are mine because God understands what the doctors do not.

I am trying to open my hands and let go of my worry so I can hold on to Jesus.

Rock and a hard place....

So much of Sam's journey has felt like being between a rock and a hard place so much of the time. Finding a place of balance. This week there has been a flurry of email's between Sam's team at school (and may I say that we have been blessed with a great team to work with Sam at school!) and myself to decide how to handle the fitness run.

The fitness run takes place every fall and spring and is one of the benchmarks the district uses to measure a student's fitness. Sam's school makes a fun event out of it. The kids walk over to the high school, It is one large campus, elementary, middle school, then high school on the far side with numerous sports fields in between, so the walk is maybe a quarter of a mile down a few hills. Once at the high school the kids find a corner of the track to start at and wait for the go. Second graders need to walk twice around the track.

My rock and a hard place is how to let Sam feel like a typical kid, yet keep him safe. For the fun run what can Sam do yet not over tax himself, bring on a headache or worse yet break a bone. Last year in first grade, for the fall Sam propelled his wheelchair around the track once in the fall as he was still on weight bearing restrictions following the femur fracture of July 2012. In the spring he was healed more so he walked once around. This fall he is doing really well so I thought he could walk the two times around his classmates will, providing he does not have to walk to the track.

The emails have been debating what Sam could do. After watching Sam practice last week, the DAPE teacher thought Sam would be better off only doing one lap. His gait really falls apart after hardly any distance. DAPE teacher described it as herky jerky, I describe it as galloping. So I will pick up Sam at school and drive him down to the track and he will walk one lap with his classmates.

Being between a rock and a hard place speaks of balance between two undesirable situations. Trying to find your way on a balance beam and not fall to either the rock or the hard place. This past Wednesday, my pastor taught out of Dueteromny 6. He showed how balance of life is not mentioned in the Bible, but rhythm is. Rhythm swings like a pendulum through a semi-circle. We swing to difficult situations and then to easy ones. Lately, we have been spending a lot of time on the easy side of Sam's disease, not needing to make a lot of accommodations for him.  Monday's fun run is swinging us to the other side for a while. It is encouraging to realize that we will swing back to the easy side again, rather than cross a balance beam of unknown length. It is a relief to know the pendulum keeps on swinging, I will not stay stuck between the rock and a hard place.

****

Thanks to Ellen for this week's "Rocks" prompts. I really surprised myself with where it took me.

Overcomer Summer!

I've been wanting to share a post of the great summer we have had, not sure how to approach it. I finally realized this morning while watching Good Morning America, this has been the summer of the overcomer!


                   

We have started this summer with great news: On a visit with Dr Healy we found out no surgery this summer! Dr Healy said to have an active but safe summer and that is what we set out to do!

We started with Dream Night at the Zoo.

Played baseball with the Miracle League!

I think Sam was most excited for Camp Akela with his Cub Scouts and sleeping in a tent for two nights.  Though we had some stormy nights and he decided that tent camping was not all that great.

 

When we got home from camp, we went right in to Day Camp at our church the following week.

 

We were able to see a couple of Twins Baseball Games!

By then it was the fourth of July!

July was a busy month for his sisters going off to different camps. Sam was in the Pan-O-Prog Parade with his Miracle League team.

 

A few doctor visits and a sleep study snuck into the summer. Thankfully there is no sleep apnea (and no surgery!), just a real restless sleeper. Anything over 5 limb movements an hour is significant, Sam had up to 30 movements and hour.

At the end of July was our town's Leprechauns Days celebration. Another parade with Cub Scouts, watching sisters in toilet bowl races and lots of fun!

 

Sam walked the whole length of the parade!

Then Sam went off to summer school for three weeks. Believe it or not, I have no photos for that! In August we went to a family camp at Covenant Pines Bible Camp.

So cold in Northern MN, but had to swim!

 

My camera stitched two photos together. See the busy Sam in the middle and on the dock!

There was also one more camp with Sam's Cub Scout troop.

By this time school is right around the corner. This is the first summer in 4 years our family has had no major crises, no trees falling on kids, no broken femurs, no ambulance rides, no surgeries. We had a typical summer packed with all sorts of fun activities. We had the summer of the over comer!

Then school started with no big meetings about how Sam is going to cope in school with wheelchairs or anything else. He just rode off on the bus like a typical kid at the end of summer!

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?