Shriners Update with a couple photos of today’s antics

To say we were amazed at the facilites and staff of Portland Shriners Hospital is an understatement.  Everything was newly redone and the sheer number of staff that we saw during our hours there was just such a sharp contrast to any of our prior experiences with our children’s medical care.  We were greeted by smiling receptionists, admission by informative admissions personnel and ushered into our examining room by a volunteer who grinned and giggled over Samuel’s antics and then served us tea and cookies, with a can of juice for Samuel.  I mean, she even ran to the other area to find him a straw!  Yeah, we were amazed. 

Once we met with his surgeon and related staff, we really felt a sense of peace.  Suddenly we had a description for Samuel’s legs, beside the term “malformed” that was on his referral papers.  His left leg is described as PFFD (click on the link to read good old Wikipedia’s take on the term).  His right leg has a shortened femur and it is called an above the knee congenital amputation.  A bit of a misnomer in that it was never actually amputated, in utero or otherwise, but apparently this is the common term for a “missing” limb.  Having these terms means I have now been able to do a more thorough info search and I am so pleased with the information I’ve now been able to find. 

The surgeon and staff walked us through the options for surgically altering his left leg (yes, a Symes amputation  (click to read the definition) is being talked about at this point).  He will be receiving rods to reinforce a newly shaped knee and will, even further down the road, need a rebuilding of his left hip as well. 

We were sitting there nodding our heads and still feeling a bit shell shocked, but it was different this time.  This time there was a sense of peace and we could see the overall plan that was being put into place.  A sharp contrast from our previous feelings.  I count that as a huge blessing!

We still have some decisions to make regarding the what, when and how of his surgeries (they are projecting an early Fall surgery date), but feel comfortable in the knowledge that we have phone numbers and a coordinator to liaison with as questions arise. 

And then for the surprise! 

We were then told that we would be meeting with the rehab coordinator and the prosthetics team.  Within an hour Samuel had an appointment for his first wheelchair and had already been casted for his first set of “stubby” prosthetics!  It’s no wonder that it has felt like a lottery winner’s dream!  We travel back to Portland very soon again.  We will be there for the week of June 12th in order for his fittings and final delivery of his new “boots” as Steve calls them.  🙂  We’ll be choosing his new chair too.

God has been abundantly good to provide all of this for Samuel.  We are so thrilled to be walking this journey with him.  It is a stretching one and not something I would have ever imagined that I would be not only walking, but honoured to be a part of. 

Just one more thing. 

Shriners has asked us to apply for treatment for Garnet’s cleft too.  We were surprised to learn that they can have empty spots available all because people are unaware that they are a specialty hospital offering treatments, surgeries and aftercare free of charge to applicants.  It is not based on the financial standing of the family and their facilities are used as teaching and research hospitals and are staffed with highly trained and well recommended physicians and surgeons.  Wow! 

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 And just in case you think I have my head stuck only in the medical realm, here is a bit of life from today.

This first photo just makes me smile.  Garnet is our fourth is age order and man do I appreciate his attention to detail.  What you can’t tell by looking at this picture is that all that Rock Band paraphernalia that you see in our front foyer?  It’s been moved from the living room.  Why?  Well, because he was vacuuming the living room and wanted to get to the edges!  Yeah.  I’m blessed.  He brings great skills to our family herd.  Nevermind the smudges and fingerprints on the mirror.  That’s my responsibility.  Umm yeah.  Moving right along…

This would be a common sight in our kitchen these days.  Samuel loves to “break dance” and do tummy spins at a ferocious speed.  He also does hand stands.  And not just quick flips up and down.  Stands (!) that last four to five seconds (counting with Mississippi’s) and sometimes longer.  He loves to use his center of gravity to his advantage.  And now that he has gained almost 4 pounds since coming home (!), he seems to be finding new ways to give his Mama a heart attack  thrill and delight us each day.