Four years ago I was given a glimpse as to the magnitude of what we were dealing with for the first time. Sam had broken his right tibia/fibula the previous Christmas Eve. He was not walking well and had a pronounced limp. I had taken Sam to our family doctor and asked for a referral to a pediatric orthopedist. We were referred to Gillette Children's Specialty Healthcare and set up an appointment with Dr. Healy. I was thinking possibly some physical therapy was needed, I'm not sure what else to expect.

It was St Patrick's Day 2010 and Sam was 4 years old. As we took the elevator up to the second floor clinic, Sam asked the woman riding with us about the shamrock she was wearing on her blouse. I don't remember much about check in or the start of our appointment. Dr Healy ordered the x-ray pictured above to check for a limb length discrepancy. Sam still has his preschool body proportions in this x-ray. I was shocked, stunned is more like it, to see all the lesions (tumors, nonossifying fibroxanthoma, lucencies, lots of names will be given to them in the ensuing years) in his legs. Combined with the fact that Sam was in early childhood special education at the time for developmental delay, Dr Healy suspected a syndrome of some type and gave us more referrals, one to genetics and one for a developmental assessment. He cautioned us about the risk of fracture, especially with the top lesion on the right femur and asked us to come back in 6 months. 3 months later it broke.

I left the office dazed. I remember stopping by McDonalds for some food for Sam and I and Daddy who was at home. Trying to explain to Richard what we had taken place was hard. To some degree we are still reeling. We still do not know what this is or how it will play out in Sam's lifetime. Some similarities have been found but not enough to fully identify it. So we call it a fibrous dysplatic condition of bone, more of a description than anything.

What a Day!

This post was started in December. It is about Sam's Gait Lab appointment at Gillette Children's Specialty Healtcare on December 16, 2013.

Sam had his Gait Lab appointment yesterday. It turned into quite a day.

One to Two inches of snow where forecasted for the day. I knew this, but it didn't start snowing until about 20 minutes before we were to leave. I think all two inches fell by the time we hit St Paul. After driving through that I was so glad to have valet parking available!

We made it to the Gait Lab just in time.

The first thing we noticed about the Gait Lab was that it is nice and toasty warm! Since they ask the kids to walk in shorts and no shoes they keep the temp up a bit. Right away Sam was asked to change into shorts and do some walking and running with his UCBs and barefoot for them that was videotaped. 

Then began the measuring. Not only weight and height, but every conceivable measurement on his lower body possible. It was very detailed. Marks were made to measure and those marks were referred back to later in the day. 

In fact the PT doing all this measuring noticed what looked like dried blisters on his feet from his UCBs. So a stop over to Assistive Technology was added to our day. 

Then the markers for the motion capture were glued and taped on. These markers are grey to look at but when a flash from a camera hits them they light up. 

It took a long time to put these all on in the exact spot they needed to be.

Then came the fun.

The magic stick he is holding was used to help point to specific spots on his legs.

The results of this day are contained in a 10 page report. There are three things we are going to act upon. The first is weakness in specific muscle sets in his lower extremities that we are going to address with physical therapy. Secondly, Sam has ankle valgus. This is a condition where the ankles roll in that leads to other problems in his legs compromising his stability. Since Sam is still growing, this can be corrected with guided growth. One side of the growth plate on the bottom of the tibia will be closed with a screw allowing the other side to grow and the angles to correct themselves. The last thing I want to follow up on is the fact that he has loose ligaments.I want to talk with the genetic doctor about this. 

So combine the gait lab information with previous x-ray information of  Sam's right tibia and we have two things to correct surgically. The ankle valgus as previously described and a telescoping rod placed in Sam's right tibia to keep the bone from bowing further and reduce the chance that the lesion will break or if it does, it will minimize the damage done by a fracture. This will be the 10th surgery for Sam and we finally have a date of March 4th.

Emotions

In the last 4 years we have had countless visits to many specialties. Each visit has brought with it so many emotions, in so many forms. I think I have been through the whole shebang and experienced it all, then I come up against something new.

The first emotion I had to come to grips with is the feeling that my child is the most urgent case around and should get in immediately to be seen. The reality is waiting times exist, it is a good thing when your child can wait. I think oncology is probably the specialty that one gets into within a few days. There is this Mama Bear side that comes out when you feel like your child is threatened and needs protection or help. It takes some time to learn to live with this and not let it alienate everyone who could help you by letting anger demand something a doctor's office cannot give you. 

The flip side of this is how to deal with the waiting. There have been so many times that I have had to wait, wait for a much sought for specialist appointment, wait for test results, wait for procedures/surgeries. While you wait emotions and expectations have time to morph and become more than they should be. All your hopes to be able to walk out of the appointment with an answer of some kind, a definitive treatment plan, or a prognosis gets built up during the wait. What usually happens is you walk out with a list of tests to be done, things to look into or even other doctors to visit. 

These emotions seem to be the hardest to deal with, the aftermath of a visit. 

At first it was pity thinking my child had an unfortunate accident and has some pain and healing to deal with. Then the realization that something isn't right, so you seek out a more refined specialist. This comes with the wait and the expectations and hopes build up. When you get to the visit, you "know" what should be done. Then one x ray changes it all and reveals that so much more is going on. You walk out of the office with a list of other  specialties to visit and tests to do. Shell shock. Life has just been flipped upside down. You began to realize something big is going on, just don't know what right now. 

The next specialist is supposed to have the answer. He or She doesn't and  in fact raises more questions. So much frustration and disappointment. 

A test gives an unexpected result out of left field. It really doesn't help when this diagnosis comes with much confusion and misunderstanding from the doctors themselves. Ok we can deal with this even though there is still more to do. 

Then an answer begins to emerge from all the craziness. This comes with a treatment plan and prognosis. Hope.

Then the visit that turns it all upside down and blows that answer out of the water. Oh the aftermath, the anger, how dare that doctor decide that all the other answers are wrong! 

Off to another very specialized specialist. More waiting. Leave the appointment with more waiting, but hope for an answer after a big conference of specialist doctors. Hope again but more guarded.

That hope is dashed with the answer of a lifelong disease, but manageable. As a bonus a wonderful community is found with others that understand. 

Then you begin to see that there are no answers and you just have to wait and see how things will manifest themselves. Wait and see.  Waiting with no timeline is a new experience.

Then emotions begin to be recycled. That unexpected result a few months ago begins to assert itself and cause so much pain. That Mama Bear comes back out and you push to get quicker appointments, but when the answer is brain surgery oh the confusion and shock. That is such a big thing. 

Some anticipation has a slow resolution. The answer is surgery but recovery takes a long time and the final answer is not seen right away.. Patience is developed.

At this point some ability to handle the swings of special needs brings begins to assert itself and when a new specialist says not to an anticipated treatment, it is a surprise but you can deal with it and life falls into a little bit of a predictable pattern. 

I think that is the problem: Predictable. There is no predictability in this life. 

Then comes a visit that throws a new emotion into this, confusion. At least it felt new until I just looked back and saw the word confusion already used, though this time is not so much shock All I know is that I know what I walked out with a feeling that while I know the specific recommendations and plans I don't fully understand it. I need time to think about it and digest the information I received.

This all leads itself how do I prepare for future visits? Will next weeks visit bring a surprise or an in and out, see you next year?

Philippians 4

6 Be careful for nothing; but in every thing by prayer and supplication with thanksgiving let your requests be made known unto God.

7 And the peace of God, which passeth all understanding, shall keep your hearts and minds through Christ Jesus.

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!