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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

Praise and Update

Hello Everyone,

Hope you are all enjoying this cooler weather, as we are.Then again, we’d still like it much cooler!

We wanted to share a PRAISE with you all and thank you for your prayers regarding Shea’s Safe Bed.

I figured it would go through several denials and a lot of paperwork before the bed was approved. However, it didn’t!   Our case manager  said that since she already had a ‘hospital lbed’ that it would be very difficult to get this particular bed approved. But she was willing to try.  Shea’s  Orthopedic Dr was willing to write a letter of medical necessity as well as fill out a Title 19 form.  After reading over all the paperwork  we gave him, and helping with some‘suggestions’ as to how the bed would benefit Shea. He wrote an  awesome letter of medical necessity regardingShea’s safety and he even suggested a full size bed over the twin because ofher feeding tubes, CPAP tubes, and oxygen tubing he said a full size bed wouldbe ‘safer’ for her to have more ability to better position herself in a waythat would ease her all over chronic pain and allow room for the requiredtubing so that she would not get tangled in it. He used several ‘buzz’ words to hype up the letter. 

Well, once Shea’s case manager got the letter from the Drshe called me and said this is going to be almost impossible to get this bed,seeing he ordered a full size PLUS IV pole and trapeze bar to go along with it.  She asked me if I wanted her to goahead and submit for the full size, I said, ‘of course’.  Then we asked you all to begin praying with us about this.

Last week, I heard that our primary insurance company did deny the bed as a non covered expense. When the case manager called me about this I asked her to go ahead and have them submit it to Medicaid for pre-auth.  She called me back and said that the DME company that supplies these beds (out of Austin) had already sent it for prior auth. They received notice that the prior auth was not needed and because of all the documentation was that included all they had to do was order the bed. 

I called today to ‘verify’ and the bed has been ordered, and she should expect delivery  in about 3weeks. It is the low bed, full size,  Itis a fully electric bed, head / foot / up & down. The mattress fits inside the frame up to the edges, making it safer for her because there are no gaps between the mattress & frame. The price tag on this bed is $9800.00.   We are so very thankful to the Lord for his blessing and to you for your prayers.

This is a link to the kind of bed she will be getting.  http://sleepsafebed.com/products/bed-models/

As for the update, her wrist and knee were still bothering her so her Orthopedic Dr ordered Xrays. We saw him Wednesday and he put he rwrist in a cast to limit it’s mobility. He said it was not broken but due to the severity of her EDS he suspected she may have stretched out some of the ligaments / tendons. So he wanted to limit the movement in her wrist. He said she should know within a couple of days if the limited mobility had lessened the pain significantly or not. 

As for the pain in her knee, the pain is over the screw holes. She had the screws removed last year because they were ‘backing out’. The Xray showed that the screw holes in her right knee had filled in, but the left knee holes hadn’t.  He has now ordered an MRI for knee. He is thinking she MAY have stress fractures around the screw holes, since this is the point of pain and that the holes had not closed up themselves.  I guess the MRI will show what our next step will need to be. This will be our next matter of prayer. 

Nothing will be done until after Thanksgiving due to the fact we are going on vacation in 2 weeks. (We are going on a cruise and Shea will be meeting up with a internet girl friend of over 8 years) Gwen and her mom will be flying into Houston and meet up with us on the Carnival Magic for a Caribbean cruise. (This will be Gwen’ first cruise). Please pray that Gwen and Shea will enjoy their time getting to finally meet face to face after 8 years.

I will update you on the bed and the MRI once we know more.

Yall enjoy your fall and stay safe out tomorrow night, whatever you may be doing.

Again, thank you for your prayers and continue to praise the Lord with us regarding Shea’s bed.