When things get hard...again

 Gabe is 13.  Puberty is in full effect, and he is growing like a weed.  About a year ago, I noticed his back looking more muscular on his right side compared to his left.  I pointed it out to his PT and she agreed a bit.  We thought it was related to him being right-handed and showing some left sided weakness to work through.  We went to his primary care last summer and I brought it up again.  She looked at his spine and said it appeared straight.  We saw orthopedics in the fall.  This was more related to ankle pronation and heel cord tightness, but she checked out his gait and his hips.  As the new year passed, his back was looking more like a hump-back and becoming really noticeable.  It didn't seem to bother him, but I was getting worried about spinal rotation from heart surgery or some post surgical skeletal issue as he grew, or something much bigger.  I called orthopedics and they ordered a spine xray.  It showed moderate scoliosis.  As soon as we saw the spinal curvature our hearts sank as we knew it was major.  It's a 47 degree curvature.  They call it syndromic scoliosis as it is related to Down syndrome.  They said while there may have been some subtle early signs, it came on very quickly related to a growth spurt he's had the past few months.  The xray also showed Gabe's growth plates are still wide open.  The positive to this is he's going to grow alot more in the next couple years.  The downside to this is that unless we correct the spinal curve, he'll grow sideways.  When scoliosis gets severe, it can affect your lungs.  With pressure on the lungs, your pulmonary system can take a major hit.  Considering Gabe's airway and cardiac history, he cannot get to that point.  The only option is surgery.  Gabe will be having spinal fusion surgery with 2 rod placements along his spine at the end of August.  The day of surgery he will automatically grow 2 inches.  He had a sedated MRI of his spine yesterday.  Luckily there is no spinal cord issues from the curve such as tethered cord or disc herniation.  Neurosurgery will not have to be involved which is a relief.  This summer he will have frequent appointments with OT and PT to work on stamina pre-op and positioning and maneuvering post op.  We will meet with nutrition therapy to focus on vit. D and calcium and "bone heatlhy" eating while we try to bulk him up for surgery.  He will meet with child life to try to help him understand what's going on and be able to work through the pain.  We will meet with the surgical team to go over every aspect of the procedure.  We may even meet with allergy to make sure there is no metal allergy prior to rod placement.  It's going to be busy.  After surgery, he'll be in the ICU for a day or two.  He'll then be on a surgical recovery unit for a 5-7 days before coming home.  They've warned us that the first 2 weeks are going to be pretty rough.  He will be out of school for 4-6 weeks.  Full recovery may take months.  It's the only option.  It's going to be alot.  All we can do is enjoy our summer and we'll get through it one day at a time.  I wish we were running him to the pool and baseball games instead of all the appointments, but it is what it is.  We've been through hard stuff before, and one thing I know for sure...Gabe's tough (and so is his family).  He's the most resilient and stubborn kid I know.  Never give up on Gabe...even when things get tough.