Pray as Payton Waits for Transplant

Payton is 23 and was diagnosed with complex regional pain syndrome in 2011 after a simple volleyball injury.  We were able to get her into remission twice but this last time it caused her foot to contract and roll in and under.   In September of 2016 we made the decision to amputate her right leg below the knee.   Her foot was so badly contracted that she would never regain function.  In March of 2017 her knee then contracted and we thought we'd have go above her knee.  Luckily they were able to release all her hamstrings and revised the original amputation.  She is now using a prosthetic and her leg is doing great.   Her biggest battle is the gi failure.   She was diagnosed with sma syndrome in 2014.  She had a surgery to bypass her intestines and really everything went downhill quickly after surgery.  Her intestines never woke up.  She was placed on tpn in July and a feeding tube was placed in October.   She never could handle the feeds.  They go backwards and pour out her stomach.   After years of fighting for answers we were sent to Omaha.   We thought there they were going to help and list her for an intestinal transplant but she was denied.   We headed back home with no answers.  She was soon septic and fighting for her life once again.   University hospital wanted to send her home on hospice.   This was unacceptable to us.  She's not done fighting.  We scheduled an appointment in cleveland and left on April 23, 2017. Payton hasn't been home since.   I came home long enough to close my daycare and get our home ready to sell.   We were able to sell it quickly and kurt found us a 2 bedroom townhouse.   We needed to downsize in order to allow me to come to cleveland and stay with Payton fulltime.   I've been here since June 5th 2017.  We stayed at the Ronald McDonald house until December.  Once the committee agreed to list her for transplant we were able to look for longer term housing.  We found a month to month lease at a house and stayed there until March of this year.   We then signed a 12 month lease for an apartment as we'll be here much longer than we thought.  Payton has been listed for her transplant since January 23rd and we wait.   It's hard to be so far from home.  We have exhausted all insurance reimbursement and we're covering double living expenses on one income.   There is no end in sight.  She'll need to stay at least 6 months after transplant and we have no idea how long we'll wait for the call.   We appreciate every bit of help.   Gas to and from the hospital is expensive,  groceries,  utilities,  rent,  copays,  prescriptions,  etc.  It's a bit overwhelming and kurt works every overtime shift he can to keep us here.   Thanks to everyone who has supported our family since we started this page so many years ago.   We love you all and couldn't keep fighting without your help.