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Shea’s Story

What we thought were simply childhood dislocations, growth spurts, and hormonal migraines turned out to be so much more.

Disability, inability to drive, unable to stay home alone for any length of time, use of a wheelchair at times, the need for a service dog, and now the possibility of a brain surgery or 2.

A little less than 3 years ago, our world began to take a roller coaster ride, with Shea in the front seat. Little did we know that what we thought were occassional dislocations years ago would turn out to be a rare connective tissue disorder that affects 1 in 5,000 people. It's called Ehlers Danlos Syndrome. (EDS)

After a constant decline in Shea's health as well as the lack of local physician's knowledge of EDS we called Dr. Clare Francomano in Baltimore, Maryland. She is a geneticist and an expert in EDS. She has done years of research on EDS.

This 3 hour appointment was very informative and educational for both Shea and I. First of all she said that Shea had Classical EDS not just hypermobile as we had first been told.

Then she went on to explain that she believes ALL Shea's health issues;(seizures, blurry vision, numbness and wealness in hands, legs and feet, severe back of the head pain, neck and back pan, gagging reflex. her body's inability to control it's temperature, lack of grip strength in her hands, migraines, loss of memory, inability to think clearly plus all her stomach issues) can be contributed to the fact that she has Cranial Cervical Instability (CCI), along with the possibility of her having something called Chiari.

The CCI was verified as she gets some mild relief once her head is lifted up off her spine. It is made worse by pushing down on top of her head.

The doctor's plan: for us to get Shea to The Chiari Institute(TCI) in Great Neck, NY for further eval. To get an Aspen collar for her to wear as well as a Pronex traction unit for her to use. The traction and Aspen collar do help with her back and neck pain and gives her some relief from the pain in the back of her head. These are other 'sure' signs of CCI.

I have CCI, EDS, Chiari, None-Epileptic Sezures, Arthritis, POTS, Congenital spinal Fusion, Degenerative disks, Osteoporosis, IBS, Asthma, TMD, and Gastroparsis.

I have had 21 surgerys in all (1989-2008)

You may 'wish' there was something you can do. There is, you can pray for Shea and our family as well as the doctors that will be seeing her and working with her.

We covet your prayers, Thank you, Shea

Latest Journal Update

Good news /Bad News

We got to come see the brand new UTSW hospital (William Clemmens Bospital) it opened Dec 6th. It is awesome, automation everywhere! Very updated. We came in for Shea's G/J tube change out. The down side to this is......her medic port would not draw blood back. :(.  It flushed great, so giving her IV & meds was no problem, it's just the blood draw that we are now concerned about. They were going to talk to the Dr about administering some cathflo in it to hopefully break up any potential clot or any blood sheath forming.   

Now for the 'bad' news. Shea has another tear in her meniscus, along with the continued off tracking that her knee caps makes, has finally given the Dr reason to do the surgery he has tried to avoid for several months now. This surfy is scheduled from Monday March 2nd, She will be in the hospital for 2-3 days. And then come home with a hip to ankle immobilizing  brace. She will not be able to bend her knee for Atleast 3 weeks, then will slowly begin bending as tolerated for the next 3 weeks. She can walk without the brace while at home,  it has to be in the full brace when out of the house.    She will be having 3 things done at once. (1) he will clean up the  tear on her meniscus & then tighten the meniscus as well by taking a few stitches in it to make it tighter in hopes of it not getting caught during the movement of the knee cap which is causing the numerous tears. (2) he will be cutting and shining her tibia over to line it up with the knee cap. (3) he will be slicing the tibia bone and putting a cadiver bone wedge in the sliced area to push out a part of the bone, so that it will cause the knee cap to protrude forward and help to keep it on track.  All this will Lord willing help take pressure of her knee, foot and lower back.  
The recent bone scan he did was pretty cool in that Dr showed us the 'hot spots' that showed up and they were in these areas of pain.  (Foot, back and knee).  The recovery to this will be long and tedious.

We ask that you pray for; the Dr and steadiness of his hands and wisdom from The Lord to do what is best for Shea. 


1 Comment

Maureen Didion
By Maureen Didion
I have just lifted up a prayer for everything to go well, during surgery and a quick recovery
The new hospital sounds wonderful.
Blessing of the day
Maureen Didion "mo"