Monday, December 2, 2013

Detour

I thought I finally had it all together - we scheduled Cav to get his new legs made in Nov (you know so it would fall under our already met deductible).

Getting his leg casted for new spiderman legs!
His prosthetist suggested we make an appointment with the amputee clinic for the same day . . . and we were able to get in which was our first God sighting (and I probably should have know something was up LOL!)

I can't remember if I have mentioned this hoopty walk Cav has developed.  We first noticed it shortly after getting his arm casts off in April.  We thought it was either a bad habit or the weight of the casts had somehow changed how he felt his center of gravity was.

It just became more and more noticeable.  Our PT thought maybe it was his hip and core strength.

Heck, even the PT at the amputee clinic thought the same thing.

Yeah it took our fabulous orthopedist one look and he ordered x-rays.

TO catch newer people up Cav has Tibial Hemimilia - they were able to save, and straighten his tibia when he had amputation surgery - summer 2012.  They did this by chopping the tibia in 3 pieces, and placing a rod through it - which also meant 8 weeks in a cast which lasted 10 days before he had to be recasted - it was a VERY long summer.  We were warned he would need another osteotomy in the future but it was my impression it would be closer to middle or even high school.

NOT 18 months later.  I just wanted to cry, I was sure I was close.  When we accepted Cav's file, I read as much as I could.  I never saw anything about curving tibia's, continuous surgery AND we had no idea about the mild radial club hands or neglect, or sensory or, or, or.  My heart breaks for this kid.  God, he just needs a break - I prayed right there in that room.

They decided to do another x-ray because he hyperextends his knee backwards.

Even as a nurse I don't quite get how this makes a difference and really I DON"T CARE!!

AS I looked at the surgery schedule I realized a January surgery (the soonest he could do (heehee so much for our deductible.) would put Cav in a cast until MARCH - oh no March is when I am supposed to be getting Dawson (you know because you can plan these things LOL).  Of course he would have to be recasted for new legs after getting his cast off, and this would be another 2 weeks at least ugh

GOD I CAN'T DO THIS I WANTED TO SCREAM!!

And then we received HIS blessing.

We still have surgery scheduled for January 20th, but they are only going to do a 2 plate (usually you hear 8 plate surgery) where they place screws and a plate into the growth plate on the outer side and let the inner grow until it evens out a bit.

The second x-ray bought us time.

He will still need the osteotomy within the next 2 years.  So please keep him in your prayers.  He asked if we were going to take the rest of that leg.  We assured him we weren't and it wouldn't look any different.  But my heart breaks for him - he meets every challenge head on and I know he will do amazing but it's a lot.

He will be 2 weeks without his prosthetic.  They think he should be able to use forearm crutches (mainly because the weakness in his hands.)  THey will lock the prosthetic knee and they think he will be fine.  PLEASE specifically pray for no snow or ice during the end of January.  We do have his wheelchair (and scored the next size up at goodwill last night for $30!!) but the concern is without the physical activity his sensory issues will raise it's ugly head.




For those who are freaks like me here is the second x-ray.  You can see the pressure indent just above the white circle.  This shows how the forces of his leg and alignment are off and how much his center of gravity is off (I think that's right.)


3 comments :

  1. I will be praying for Cav; he has always had a special place in my heart. How is he doing emotionally at this time? Hugs, Denise

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  2. Oh...I get this. I really do. More surgeries "sometime" in the future, beautiful children with rough pasts, whew.....praying.

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  3. I really just love your Cav. He just holds a special place and I think of him often. Praying for things to go well in the coming months for him and that he heals quickly and can get back to amazing everyone with his resillience when it comes to those legs of his. I pray his heart continues to heal and grow with your family, especially as it grows again in the coming months. I'm sure that time of transition, yet again, my be difficult for him -- someone else coming in. I hope these next few months strengthen him in knowing he is loved and important and a part of the family.

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