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Tuesday, July 1, 2008


I'm super-dooper tired (why does 8 hours of driving, sitting on your butt doing nothing, make you feel so whipped?!), so this will be short. I know many of you have been praying for, thinking of, and loving us, so I wanted to quickly update on our Minneapolis Shriner's adventure.

First of all, I must boast! My daughter is seriously the most rockstar toddler ever. In the 16 hours we spent in the car, driving to and from the Twin Cities, I think she whined twice. And even then, she was easily consoled with a lively rendition of "If You're Happy and You Know It" or her beloved Elmo DVD. She is such a trooper!

We were able to hang out with fabulous BFFs on Sunday, and it was SUCH a wonderful day. Hanging out with these friends would have, on its own, made the trip worth it. Thank you for your amazing hospitality, PM and co.!

And then came the "Shriner's Day". What an absolutely amazing place. Several times during our 7 hour stay at the hospital, I caught myself saying, "This is truly unbelievable." EVERY single person we came in contact with was fantastically helpful, friendly and nice. Believe me, that is NOT something you say of most hospitals. We were taken such good care of, and we never felt rushed or trivialized.

We first met with the doctor. She was fantastic. A true answer to every prayer. After ten minutes of "chit chat" and introductions, I felt that reassurance again. This was another trustworthy doctor and I could feel my breathing calm down. She spent a long time with us, answering each question thoroughly.

We asked about SDR. Dr. Gyr said that it would be her professional opinion that we should wait until Ellie was at least five years old before even contemplating this surgery. She had some cautious words to say about St. Louis, and told us about her experiences with SDR (which were intensive). Everything she had to say made sense (this is not to say that EVERY child should wait until they're five until they undergo SDR, but given some of Ellie's issues, the doctor believed it would be in ELLIE'S best interest). Everything she had to say calmed my heart. Everything she had to say, even if it wasn't completely positive or hopeful, made me thank God, because she was the kind of doctor I was hoping for. Someone who was honest, yet delicate.

We asked about Botox. Dr. Gyr thought that we should wait a bit on that too, but maybe by next summer, Ellie would be a good candidate for that. Again, her reasons for wanting to wait on Botox treatment made perfect sense, and she explained herself in a way that even *I* could understand!

We asked about a Baclofen pump (something we have researched very little). Dr. Gyr said that she thought the pump may be a really good option for Ellie. However, because the pump is the size of a hockey puck, Ellie would have to be bigger before we could talk seriously about it. Again, perfect sense. Perfect explanation.

The doctor ordered x-rays of Ellie's hips while we were there (the equipment at Shriner's is state of the art, for real!). Dr. Gyr went through her x-ray evaluation with us, and showed us why she was concerned about Ellie's hips. Her right hip is nearly out of the socket, and she was fairly certain that Ellie would need surgery sooner than later (probably within the next 18 months) to lengthen the tendon. Every one of our doctors has said this, so it wasn't shocking. It was actually nice to know that everyone is on the same page for once!

Then, the doctor and two therapists examined Ellie's AFOs (leg braces). They all agreed that they were too bulky and need some "tweaking". Again, they have a state of the art on-site lab, and they make their own braces there. It was really awesome to see what they could do with Ellie's braces. Now we need to step up to the plate and force little Missy to wear them (they're not Ellie's favorite, since they inhibit her crawling and sitting sometimes). The braces stretch out her tendons, which will help stave off surgeries, so they're definitely worth it. The Shriner's therapists figured that she'd probably outgrow her current braces within six months, so our next pair they'll make from scratch. This was probably the most blatant example of private vs. public healthcare. Even though we were able to get AFOs through our government health insurance, they weren't the "best" quality, because of major monetary concerns. This is why teaming up with Shriner's is such a blessing: more opinions, better equipment, at no cost. Can't get better than that.

We made a follow-up appointment for January (we'll get new x-rays of Ellie's hips to check on the bad socket, and we'll probably get new AFOs made). All expenses, once again, will be paid. ROCK ON.

They also invited Ellie to Aquatic Therapy camp next summer (it's one week long), so we may be making the Minneapolis trek a few more times!

Was it worth the time, the 8 hours one-way in the car, the not-so-fab hotel sleep? ABSOLUTELY. We added amazingly talented and WISE people to our team of "People Who Love Ellie and Want To See Her Reach Her Highest Potential". That's worth the drive.

THANK YOU for your prayers, loved ones. They are coveted more than you know!

I'll fire off a "What now?" post tomorrow...after a good night's sleep in my own bed. So, I leave you tonight with some pictures from our weekend...

The outside of the hospital. It is SERIOUSLY nice and in a swankidy-swank neighborhood (we felt right at home, ha!)


Sunny said...

I am so excited for you and little miss!

Amber said...

So glad your visit went so well! BTW, your daughter has the BEST smile! :^)

Sheila said...

Oh, Chrystie! I'm so delighted to hear your trip went so well. I wish we had a Shriners Hospital near us. Malayna also loves to sing the "happy and you know it" song and watching Elmo DVDs in the car. If we lived near each other I think she and Ellie could be BFFs! The pics are great!