Johnathan had spine x-rays back in March and we then repeated those x-rays in June due to noticeable changes. His curve is now 63 degrees but his twist has worsened to 91 degrees. Pretty much from the stomch down the spine bones that should be right to left ar now front to back. Complete spine fusion is not only a must, but an immediate must. We can no longer sit in any chair long, our soft boston brace causes us pain and we have started vomiting on a regular basis and it ain't due to reflux. I believe the twist is pulling the stomach and the cause for our new issue.
Hand and foot tendon releases are still amust but totally take back seat to spine.
Fundlplication is not yet a possibility as stomach needs to grow more. And we were informed that such surgeries can, and usually do, come loose after a few years and are not usually successfully redone. So not sure if this surgery is any longer on our list as a possible helper surgery.

Spine surgery chaos....we haev seen Dr Schwend at Children's Mercy here in KC 2-3 times over last 2 years. Aggravated that he only seemed interested int he spine, therefor overlooking the evident arm and leg issues, I went to St Louis to see Dr Anderson, who was Johanthan's ortho before. He agve a plan for hands and feet, agreed with Schwend on the spine surgery necessity and informed me that Schwend didn't discuss hands and feet cause he is only doing spine. Well, that explains a lot,btu yet aggravates me even more. WHY would a parent of a CP child want more than one doc overlooking their childs ortho needs??? Sounds COMPLETELY stupid to me, but yet Children's Mercy's new plan is to have docs specialize in one thing....HELLO legs and arms and spine kinda go together and the skeletal structure needs to be addressed by one doc not leaving the parent to be the go between to get adequate care. WOW! Maybe I am alone int his, but seriously can not belive this bright idea...but again this is the hospital that has waay too many clinics and sends CP parents to dang near every clinic to address single needs, but yet is unable to get docs together on one page to, I don't know, make better quality care in a least stressful environment...which is what happened to us back in 2000 when docs not having all the facts were truly tossed as to whetehr our son had a degenerative disease or not. I had to go to Kennedy Krieger Institute in Baltimore to have their doctor teams tell me my son did not have a degenerative disease. And then also why we still to this day ahve to inform everyone that has access to Childrens Mercy's records that our son does not have a siezure disorder, but that Dr Graff, had of neuro, just chose to diagnose our son cause he has CP and the symptoms sound like siezure activity...again, "did you even touch the child or listen to a word I said". No. Quick to diagnose is not always best and would have just unnecessarily placed my son on a serious narcotic for no reason. Only due to my bitchiess, forgive me, in the numerous ER visits, did doctors actually test and then diagnose my child with a baclofen pump tubing whole. Can't even imagine if I had shut up and listen. Beyond that, this is also why we truly only  have a rehab doc that signs our scripts, a GI doc for our reflux, and a nurse that is our right hand. And also why Johnathans medical record is such a chaoitc mess at this hospital and I must continue to fight to keep his records straight.

Forgive the releaser, but I am trying to let you feel why I don't have too much faith in Children's Mercy. I live here and am sent there by all docs I have tried outside of their hospital cause it all comes down to local is quicker if there is an issue.

Now our issue...Dr Anderson has not yet agreed to do the surgery due to the fact that he is 4 hours away and the complexity of the recover that will be involved. I truly pray that he takes our case, for I need to trust the doctor completely. I need to trust the words of the doctor as far as knowing I am making all the right decisions. He knows Johnathan, he knows us and he knows the unforseent hings that have occured in the past with Johnatahn's surgeries. I need him to permanently take Johnathan on as an orthopedic patient, so I can prevent thigns from ever getting this bad again; or at least try to. I know this is surgery and then outpatient at a rehab facility for minimum of 2 weeks. I am prepared and ready to do what I must for it is all about what is best for Johanthan. PRAY WITH ME.
I do have an appointment still schedule with Dr Scwend for next month as a back up trial if need be, for I do not have time to shop around and I have heard from another parent that he did arms, legs and spine on her child, so he is qualified if need be. It could just be Children's Mercy's policy preventing him from doing the entire ortho needs. Again, not completely trusting, no patient/family and doc repore. I would have to 2nd guess every word every decision. And then ususally the after guess work is left to the parents, which is a whole nother issue.

Johanthans feeding tube placement will also be compromised once we starighten the spine, so its palcement will have to change. And since we take nothing by mouth, this will have to be done right after spine surgery, before release from IV fluids. And since our 11 year old is recently becoming a puker, I know his stomach is already being compromised somehow; I just hope surgery comes before it gets too bad.

This is big. This is scary. But truly, it is in Gods hands and we will stay open for whatever He chooses to be the outcome.