Thursday, March 1, 2012

Shriner's decisions

I am sure i have mentioned that Cav will be a double amputee - and that the orthopedist here said we needed to wait until he is completely bonded and trusting.

Hmmmm, and how do I gauge that!!

ANyhow, Cav must have gained 5 lbs since coming home.  He is just getting so heavy to carry everywhere.  I mean he walks on his knees but the one thing we didn't anticipate is the SNOW and wet muddy ground.  Also the concrete and pebbles to a terrible number on his poor little knees.

When I picked up Cav from preschool yesterday the teacher handed me a balloon doggie.  Apparently, a shriner handed it to our school physical therapist during a meeting to give to our teacher for Cav.  




Of course a balloon in the wind with a child who has never actually had a balloon equals . . . um . . . a screaming crying little boy ugh!

Anyhow, this has made me think that I might need to reevaluate our decision to have his surgery at home.  We unfortunately live in the no man's land of Shriner's - go ahead look at the map, Shriner's everywhere except near Colorado.  BUT there are 3 all about 12-15 hours away - hmmm Road Trip!!

Seriously, Cav's disability is a 1 in a million birth defect and his is bilateral.  Anyhow, this tells me no one will be the leading expert.  But this will affect his mobility and fit of prosthetics, so I have been fretting over making the right decision on the team who will perform the amputation and create his first prosthetics.

When we first saw his file we spoke to all three Shriner's - Utah, Minneapolis, and St Louis as well as Denver Children's.  THey of course all said they would LOVE to care for him - Ugh such a life changing decision - and so hard to make.



5 comments :

  1. Praying for God's wisdom and guidance to settle upon you!! :) Cav is one amazing little boy! :)

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    1. As a child, I was at the MPLS Shriners. They are wonderful!Im sure they all are though! Good luck!

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  2. Will Cav be above the knee or below?

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  3. His little leg we think will be a THROUGH the knee - thus need for a great prosthetist. The longer leg will be a below the knee.

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  4. I understand completely with what your going through. We live in Michigan and have many wonderful hospitals to treat our children from China but we're going to (hopefully) be heading south 6.5 hours to Cincinnati Children's for their Spina Bifida clinic. They schedule EVERYTHING (urology, neurology, bowel management, ortho, etc) to be coordinated into one or two weeks depending on the complexity of the child's needs. We are so hoping it'll work out!

    Praying for you as you make the best decisions for your little man!

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