Grace has also suffered a stroke because one of her last surgeons left a piece of gel foam in her brain to stop a bleed when they knicked a vein during a brain surgey. After a fight to regain her left side movement back from being paralized she has done very well with her PT and OT goals.
Gracie has a shunt system with two catheters in her brain that are y'ed together with an anti-siphon device. Along with that system she has two stents in her brain to keep both sides connected flowing together. That was a necessity because she kept on loculatiing; that is where cycsts keep forming inside her ventricles trapping CSF fluid and blocking things off from one side to the other so we created a pathway to each side for her.
Her skull is pieced together with titanium plates and screws due to many craniotomies and issues with high pressure leaks that actually led a piece of her skull to pop off under high pressure. We recently were told by her new surgeon the way it was done was not the way it should have been done and our daughter was subjected to much more than necessary. WHICH brings me to this next bit of NEWS....
We recently found a WISE top notch, very sought after surgeon, thank God! He is a God send and has an amazing history in complex cases...I am forever grateful to the Lord for guiding us to him. He has a freestanding practice and is well known with-in his field. Hiscolleagues and staff out do themselves all the time and I am so happy my girl is there.
Grace recently has added 3 new specialist to her list of docs. Sad part is we have discovered she is totally blind in her peripheral vision in her left eye and almost totally in her right. All caused by careless acts of her prior surgeon.
Insurance won't pay for anything they say are considered disposables, they won't cover specialists if they are out of network if they "feel" she could use an adult doctor. I have to fight against them daily to get what Graace deserves. We don't have pediatric specialist in our insurance network so we must travel which is NOT covered.
Gracie's Port meds and sterile needles and supplies are not covered...those scripts are filled and when they are added up when they are filled close to $1500 out of pocked which my insurance will not cover. BUT if she does not have PORT care she can clot get ill, infected, die.
They admit, Grace is disabled...has the needs, but insurance won't cover them. We are forced to pay out of pocket.
Grace has been life flighted more than once and each time that is NOT covered. This was not an elective thing we just decided to do. We HAD to save our daughters life. They refuse to cut out bill in half unlesswe have a LARGE sum to put down. We make payments but the undaunting amount of 36 grand and two of them at that is a tad overwhelming.
Grace Just had number 89 brain surgery and once again we are facing uncertainty. Brain surgery 90 is coming up...with a spinal leak and some back issues from a prior surgery where her prior surgeon took more bone from her spine because they broke a catheter off in her back from a lumbar drain and lost the tip in her spine...we are now faced with a spinal surgery to repair Gracie's back.
The only thing we do know is we believe in miracles. My girl suffers insurmountable pain daily and I will never stop fighting for her.
I am tired of not asking for help and I am tired of being prideful. We need help. The overload of unpaid medical bills is drowning us...my roof is leaking into all rooms in my home...including light fixtures over my kitchen table.
What was started out as a simple kitchen remodel in 2008 has still not been finished because we have paid down bills because Grace has been in the hospital since then and all our savings has gone to that. I have no floors, no walls, no ceilings...I don't care but the upkeep to keep things sanitary is beginning to make me crazy. Gracie needs things to be safe...clean and no worries of infection.
To learn more about our girl please visit us here:
Please if you can help us reach our goal we would be so thankful.
If you would rather send your donation to this institution, Gracie has a giving fund set up here:
Visions Federal Credit Union
26 Day Hollow Rd, Owego, NY 13827
The Account is under Tim and Michelle Wilkinson
it is called the Grace Fund all monies will go into that fund.
Please send a check to that location please put the information above on your check.
Thank you for your help, your prayers and love we are forever grateful for all who have helped in our on going battle for our daughter life.
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