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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

Join us in Praising the Lord

Thank you all for your prayers for on behalf of Shea getting her bed, as well as having fun on the cruise. We are praising the Lord for his goodness and for your prayers.

Shea has had her bed for over a week now and loves it. Its big enough for Shea to be able to turn over in it with all her 'cords' attached to her as well as enough room for Cindy to be able to sleep with her.  Its also safer in the fact that there are no gaps between the mattress and the bed frame. It's safer in that she is able to raise it and lower it using the multiple adjustments on it, so she can adjust it to her need, that day. Which might be a different height than what she needs tomorrow, depending how what is hurting and how much flexability  she has that particular night.

So now on to the cruise, after 10 years of chatting online, Shea and Gwen were finally able to meet! It was a good time, had by all. After eating dinner together at night, Shea and Gwen would go see a show together, or listen to Karoke or just hang out and visit.  There were days while we were 'cruising'' at sea, they would meet up and play some of the games that were onboard, and just enjoy being together. That's what this cruise was all about. Thank you for your prayers of good health during the cruise as well as rest and enjoyment. She was blessed with all these! 

Now, once we returned home, she had a CT done on her knee, and it was determined by her Dr. that what he thought was fairly good cartilage in her knee, (thus the reason he did not transplant it during the scope 2 months ago)  he has determined that it was worse than he thought. With it being this late in the year, and Christmas coming up, the only date available this year is Dec 22nd, so Shea will be having an OATS procedure done, as outpatient surgery that day. 

She will be non- weight bearing for a few weeks at home, then in her wheelchair when she is out and about. So we will be spending a nice quiet CHRISTmas and New Years at home.

Prayers for Shea and her Dr that day would be greatly appreciated. We have been told that due to it being the Dr's last surgery day for 2014, he has 7 cases, so far on the 22nd.

I will update her page after the procedure and getting her home.

Comments

1 Comment

Maureen Didion
By Maureen Didion
I too, sing His praises. He is always at our side.
The picture is wonderful, so glad the cruise went so well. I'll bet it was a welcome break form "everyday" life.
love, hugs, daily prayers mo