OMG...if Children's Mercy had even half of what St John’s Hospital and Ranken-Jordan Rehab facility had, I would not have to travel so far...these places are amazing and just again reassure me as to the fact that I have made the right choice.
Surgery will be October 18th. We will be 3-5 days in ICU, then a few more days in a regular hospital room. Then 6 week’s minimum at the rehab facility.
Surgery will just be from the back...AMAZING. They feel they can get us from a 97 degree to a 47 degree. They say they can't do too much with the twist, but say it will straighten some during the surgery. Sad, but understandable, and hey, at least everything will stop getting worse, which is the true goal.
Sadly, we will have to remove the baclofen pump tubing in order to do the surgery and not risk nicking it. I knew this in my head, but hated hearing it today. They say it is a nightmare replacing this, as you have to replace it in a new place as scar tissue builds up around the old one to hold it in place, but scar tissue is not like our bodies natural tissues, as it doesn't regrow to itself very well. All this causes the tubing to move or come dislodged from the pump due to moving. However, I would rather replace it than nick it and have to go back in to replace it. And it is 7 years old, so it is time.
Being away from home for 2 whole months will be hard, but again I know this is what is best for Johnathan a far as surgery and recovery goes, so we will all have to keep reminding ourselves of that as I know it will be hard in numerous ways, our being apart. We should get home either by Johnathans 12th birthday, or at least by Christmas.
I am very excited that the latest issues will soon be gone and we will get to put an end to the standstill that has become Johnathans life now for almost a year.
They will brace him within days of surgery, then get him up and start his therapies. They plan on getting him standing again, which is amazing; as it has been years and he soo loved it. We will get a stander, a new wheelchair, and the ability to get back to using our Dynavox, Tap I tools and truly just get back to showing the world how smart he really is. Sad that I am soo excited, yet understandable if you know what the "standstill" shoes are really like.
Will be requesting tons of prayers on October 18th, for the doctor’s nurses, Johnathan, all of us. Will ask to pray extra for that 1st week or 2, as side affects to surgeries are always possible and scary.

Thank you all
God Bless