Stretch's Upgrades

The exterior evidence of Sean's "upgrades" installation. Well, the scar AND the unmistakable increase in height. Didn't even get the whole scar (gotta give a teenager some privacy - he did give me permission to post this pic).

It's about time for a post-surgery update. Sean visited with Dr. D'Astous today and came away with a glowing report. There is still much pain ... and now boredom with the whole ordeal. But physically he is healing well and making the adjustment to all the internal change. Dr. Osborn also put Sean on Tamiflu to protect him from all the nasty bugs out there. And Sean got his swine flu vaccination.

So I suppose there's nothing more for us to do except to try to ease him back into life after surgery. He is quite enjoying wearing underwear again! Clothes are also a nicety to which he had become unaccustomed. Hoping for lovely weather so we can make some outings out-of-doors.

Here's to looking tall & handsome!!

My Guy

My guy is home from the hospital! He charmed his way through surgery & rehab...now he's home for recovery...and just as charming. Even when suffering, Sean kept his cheerful demeanor - sharing a smile and a giggle whenever the opportunity arose. His compassion and empathy touched many. He brightened days for many with his sense of humor and undeniable courage.

The surgery itself went far better than expected, lasting only five hours instead of eight hours as scheduled. And Sean continued to amaze with how quickly he was able to overcome post-surgery challenges. He is setting some kind of record for healing. A true champion.

Jasper Says Relax

Wish I had Jasper here to mess with my feelings. Sean was going to become a homebound student on Monday when he has surgery. BUT this week he has not been able to be upright in his wheelchair for more than 20 minutes without the pain becoming unbearable. It is so bad he is barely eating. His spine is crumbling as we watch. So I picked him up at school today and we are officially homebound.

I feel the panic washing over me. Please let the surgery make this better. Please.

On the Countdown to Sean's Surgery...8 Days

Spinal surgery, or "spinal fusion," is a procedure in which rods are inserted into the back to correct unwanted curvature of the spine (scoliosis). Sean's scoliosis was caused by weakening of his back muscles which normally keep the spine straight. Following the surgery, Sean should be much straighter & a few inches taller and should breathe better. And he'll need new medical equipment to accommodate those changes.

IdobelieveIdobelieveIdobelieve

I believe in miracles! Sean's spinal fusion surgery has been moved up to September 28. Meet one of the many miracle workers who will be attempting to relieve Sean's pain and help him lead a more comfortable life.......

Jacques D'Astous, M.D., FRCS(C)

Dr. D'Astous is a pediatric orthopaedic surgeon who practices at Shriners Hospitals for Children - Intermountain and is now the consulting staff at Primary Children's Medical Center. His particular interests include neuromuscular disorders, spinal deformities, as well as general pediatric orthopaedics. He is the Medical Director of the Movement Analysis Laboratory at Shriners Hospital.

The surgery will take place at Primary Children's Medical Center in Salt Lake City, Utah. Sean will remain at that facility until he is well enough to leave the intensive care unit. Then we hope to transfer him to a smaller, quieter, more familiar facility - Shriner's Hospital Intermountain, also located in Salt Lake City, Utah.

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107 Days Until Christmas...Will You Be Ready?

Will I be ready? Yes...and no. Today we (finally) got the word that Sean's spinal fusion is scheduled for December 2. So it will be a holly, jolly hospital season this year.

I am so ready for Sean to get this long-awaited surgery. When I told him the surgery date he looked at me and started crying. "I can't wait that long. My body hurts. I can't take it any more." I can't take it any more, either...seeing my angel unable to find any relief from the pain. For that reason, I WILL be ready.

On the other hand, will I ever really be ready? Ready for one more major step in the progression of this disease. Ready for him to experience even more pain and suffering in hopes that it will bring some measure of relief to him after he heals.

Bitter tears fall as I think of his precious childhood spent knowing too much of pain.

Grateful tears fall as I attempt to comprehend how I could be so blessed to be his mother. To have his sunshine fill my every day. To know true strength of character. True courage.