Tuesday, February 24, 2015

Some courage...a whole lotta faith...smothered in love!

I've been missing from the blog sphere...regrouping...healing...reflecting and then Sam decided to throw in 90+ days of illness, a couple bouts of pneumonia, some interesting mouth issues, a few autoimmune reactions and well...writing didn't make it to the top of my priority list.

So what brings me to sit down and post tonight?? Sam is sound asleep at 8:00 pm and I know writing helps me sort things out, my therapy...and I need some of that. Right now...Sam and I are in St. Louis getting a second opinion on his hip and Sam is fighting a virus and recovering from some mouth issues (tongue laceration & a cut in his lower gum) which happened while he was being medicated for a canker sore which may have been caused by a medication for severe acid reflux which may have caused aspiration pneumonia and basically that goes on and on covering the last 6 months. Crazy, challenging, frustrating...so very hard to watch Sam go through so much.  Feeling out of control, waiting to see what will hit next, wondering why life has been such a roller coaster and honestly "How the hell do I get off??"

It would be so easy to get swallowed up in the drama...to just give up. When bad things happen we want to question why?? We can act badly and people would understand...we are going through so much...the stress of our situation and lives can be blamed.

But then...I look at Sam and how he makes it through each day...and I wake up each morning and read the plaque my best friend gave me before she died "Trust in the Lord with all your heart"...and I think of my Mom and how she showed grace in all she did...and I pull myself up by my boot straps and go on. Not perfectly...not even close...and some days...only by the grace of God do I make it through to the end of the day.

And I realize that God put all of those people and things and experiences in my life to help me through...to teach me...to encourage me and to understand that my time would be better spent appreciating what I have, who I'm with and remembering to be thankful, to choose to act with grace then to waste my time in negativity, pity or destructive behavior.  And sometimes I fail which only shows I'm human...and I hope I learn something from it.

As Sam and I headed in to see yet another orthopedic surgeon I kept an open mind and a hopeful heart. Sam isn't feeling well but he still managed to smile and talk to the patients waiting in the lobby. He didn't want to be in another doctor's office and he let me know by sitting a few seats away from me but he continued to smile and bargain for ice cream. He cooperated with letting the doctors move his leg to check his ROM and showing them how he walks, but when the x-Rays came up on the screen and we began to talk about his hip he tried to maneuver himself out of the office. I reassured him that he was fine and that he could stay and he countered with another plea for ice cream. He knows when and how to seal the deal.

We talked about hip fusion and total hip replacement. I voiced my concerns that a hip fusion would not take care of Sam's leg length issue and his limp and twisted gait could possibly cause additional injury to his knees or back after the hip fusion is performed. Dr. Clohisy agreed and we discussed a total hip replacement. I again voiced my concerns about hip dislocation and how low tone contributes to this and people with Down syndrome tend to have low tone. He said the failure rate for a THR in a patient with Down syndrome is 20%, which means there is a 80% success rate. I asked him if Sam were his child what would he be leaning toward. He said first and foremost he wouldn't consider anything until Sam's hip issues warrant taking the next step and that step would be a sedated CT scan and extensive x-rays to assess Sam's hip structure which would help determine if a THR is possible. He does not do many hip fusions in his practice unless it is the only option and would lean toward the THR for Sam to give him the best possible range of motion and to correct his leg length issue at the same time. A hip fusion would mean an extended recovery, including 4 months in a body brace and then rehab to learn to walk again, along with Sam having to learn a new way to sit and realizing and learning to compromise for the limitations imposed by his hip being fused. A total hip replacement would mean two months in a brace but with some mobility and extended rehab to stretch muscles and learn how to walk and move with his new hip. With a 20% chance of failure or dislocation, further surgery or added support to the hip could cause an extended rehab/recovery process. Dr. Clohisy has performed quite a few THR's on patients with Down syndrome with both successes and failures.

A lot to think about and consider..but for now...Sam and I are going to enjoy our time together...and eat some ice cream.

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