A Veritable Buffet

Holy Smokes what a day!

This whole deal is a like an all you can feel buffet!  Not even kidding.  One minute, we feel just normal, then the next serving is overwhelm, then panic, a sprinkling of joy here and there and the whole course is wrapped up with a big plate of intrigue!  And then....there's the crazy stuff that just never ends!  And then, there is the fact that my brain is completely, totally fried.

Today, Shelbie had to spend the afternoon at Mountain View Hospital in the city at Ortho clinic.  Before we headed down, we had to stop at the  hospital here to pick up her MRI stuff from two weeks ago on her knees.  The front doors were locked and staff was directing hospital visitors through the emergency entrance.  There was a press conference going on announcing that our local county hospital would be partnering with University of Utah Hospital to bring more specialists to our town!

As soon as I heard this, I knew without a doubt that God is moving people and resources into place for us and preparing things as we transition from SDS to the new disease.  The feeling was so overwhelming, I actually began to tremble!  I'm not exactly sure how it will impact us but I know that this is huge and significant news for us and that God's hand is in the details.

After we got back in the car from picking up the MRI report, I had Shelbie read it to me while I drove.  If you remember, the nurse had said a couple of weeks ago that there was unspecified cartilage issues in her knee.  In fact, it's not unspecified, she has blistering in her cartilage among other significant problems.  They named two different abnormalities that I have never heard of in my life!  I was fuming mad that the nurses told me it was no big deal and the orthopedic doc would just clarify things for us.

I was so angry about the misinformation I had been given but it also hit me that for the first time in my life with chronic illness and my kids, I went to a specialist's appointment without any past history, records, research, notes, questions...nothing!! Now, I have 30 minutes, while driving to educate myself on cartilage issues, blistering cartilage and anatomy of the knee and all the strange vocabulary in the report so I could be educated and figure out how it all ties in with connective tissues disorder, hypermobility, mitochondrial, and SDS!  I was so angry!!  Shelbie was angry and crying that she too had felt misled.

We arrived a few minutes early and I literally crammed some articles in my brain I could pull up on the phone with the very slow wifi I was dealing with.

We got into a room and kept cramming until I realized that Shelbie was falling apart.  I put the phone away and tried to talk her down from the edge.  We can usually turn bad situations into something funny but she was a tough crowd today!  After about an hour and a half, even the nurse said, "I'm not going to let you out of here until I see a smile out of you."

 There comes a point in the chaos that I have to be the one to keep everyone together no matter how I am feeling.  I can't be the one falling apart and stressed, at least not in front of the kids, so, every time the doctor stepped out of the room, I grabbed a plastic body part from their basket of body parts and made a joke.

"I sometimes put my FOOT in my mouth!"

"Shelbie, I've gotta HAND it to you!"

"I'm way too HIP for you Shelbie!"
Finally, I cracked her tough shell and she had a little fun of her own! 
"Doctor, I think I have a problem with my foot"
The funniest part was that when he stepped out, we scrambled to grab a body part.  We didn't know how much time we had and we didn't want to get caught goofing around!  It was classic us!  

I love this Ortho doc.  He has put my rotator cuff back together twice, my knee, Spencer's ankle, Sam's knee and now Shelbie.  

Anyways...on to Shelbie's news.  She has a multitude of problems!! Holy cow!  We went in there for a knee problem but he found hip problems, ankle problems and both knees have problems as well as her SI Joint. 

 He has 4 patients with Ehlers Danlos Syndrome and he said her examination seems very much like his EDS patients.  Her ligaments and tendons are extremely lax and stretch too far but her muscles are abnormally tight and unusually big so they pull her joints all out of alignment.  It's going to be very difficult to treat.  He also found that her ligament that comes down from the patella, knee cap, is  15 degrees off.  This is a birth defect and causing some of her problems too.  And YES, she has blistering in her cartilage and very small tears just barely starting to form.  He said it is pretty important that we fix this sooner than later. 

We are going to try some specialized treatments with a physical therapist and she will have to have her knees taped in place for a few weeks. There are only two Physical Therapists in the area that can do this special treatment on her Sacroiliac Joint.  If that helps her feel better, then we will have to have special braces made for her.  At some point, maybe next year, she will likely need surgery to move the defective ligaments to where they are suppose to be; lined up with her knee cap. 

He also found that she has Achilles Tendon problems and Bursitis in both hips!! No wonder this girl is always in pain!  Sheesh! 

When we left several hours later, I said, "Well, I think it's official, welcome to the team!  The elite team of docs we have trying to make sense of this genetic mess! We will probably be regulars here now."  

He laughed and asked how Sam was doing with his abnormal ACL?  I told him Sam's history this year and he gave me some exercises for Sam to do.  Since Sam also has Hypermobility problems the Doctor gave me some advice to protect his joints. 

 Then he said, "Considering your kids' conditions, your boys have chosen the most difficult sports and most dangerous ones but, I think it's great that you let them live their life doing what makes them happy despite the toll it will take on their body and the damage they will do.  My job will be to keep putting them back together!"  I loved his attitude!  I loved that he is willing to take on hard things, complex things!  Why can't all doctors be like this?

Even though we had to hear about even more problems today, I feel like it was a productive visit and at least we have a plan and a course of action and another great team member to add.



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