First visit at Shriner's Hospital

Long blog alert!  Below is a recap of our first day at Shriner’s Hospital in Houston.  For those who want the cliff notes version, we saw several specialists.  They are hopeful they can treat Kinnley, but there is no rush for immediate surgeries.

video games - who is having more fun? 

We woke up very early to begin our trek to Houston.  Our appointment time was 9:00am and we knew we would hit traffic.  Oh my, but the crazy traffic!  I have never been so glad to have Jad in the driver’s seat!  Jad said it best, “how do these people deal with this every day?”.  There should be someone handing out red badges of courage at all those toll booths!  Anyhow, we arrived with 10 minutes to spare.  As we wheeled toward the parking garage, a friendly security guard waved us down.  He politely asked if we would mind parking outside between the Shriner’s vans instead of navigating Jad’s big truck through the parking garage.  Why yes, yes we would love to park outside, avoid weaving through the parking garage and make Kinnley sick!  After a quick family prayer, we headed inside.  The smiling man at the front desk asked if we had an appointment and sent us up to the fifth floor.  Outside the elevator, we were signed in by other smiling faces and each given a badge.  Then off to the appointment area, where we signed a couple of papers.  Kinnley and Jad ran off to play the video games in the waiting area.  Before long, we were called in for the appointment.  On the way to the room, we passed a classroom, fully equipped for teaching children who are at Shriner’s for longer stays.  Wow.  The nurses told us how happy they were to have us with them today, thanked us for coming to see them, and took us to an exam room.  Perhaps we took a wrong turn and ended up in a Bed 'n Breakfast?  Where was all this cheerfulness coming from?  The exam room had two large chairs and two little children sized chairs, and two boxes filled with books, puzzles, and toys.  The nurse took Kinnley down the hall to get her pick of stuffed animals.  Somehow she conned them out of not one, but two stuffed animals.  Somewhere along the way, she also received a princess sticker.  I’ll stop going on and on about the staff and the environment here.  By now, you get the picture that this place is family oriented and friendly.  It really is like going to Disney World for a doctor visit.  

Burning off energy on the playscape

We spent the entire morning (9:00am-noon) seeing nurses and therapists.  Kinnley was evaluated, measured, poked, and prodded.  Never once did she complain, perhaps because they made the event more like “play therapy” than an exam.  Kinnley is an awesome trooper!  We had 45 minutes for lunch, so we hit the cafeteria.  After a quick lunch, Kinnley was able to go onto the balcony and burn off some energy on the playscape.  It was fully shaded, and equipped for challenged children.  Low steps in most areas, and ramp entrances in other places.  It’s all about the kids!

The afternoon was spent being evaluated by the specialists.  First was the upper arm extremity specialist.  Along with her came a director of therapy and an intern.  She teased Kinnley and examined her by using toy dinosaurs to get her to do certain things (grab it in the air, try to pull in out of her hand, etc.).  She told us how fortunate Kinnley is to have full range of motion in her shoulders and elbows.  Most kids with arthrogyposis have limitations which truly impact their daily self care capabilities.  Kinnley’s upper extremity issues are only with her wrists.  Her right wrist in minimally affected.  The specialist didn’t think we needed to address this hand at all (yeah!).  Her left hand points down at a 90 degree angle.  However, it does have some flexibility if you manually stretch it.  The specialist wants us to do twice daily flexing, and put it in a splint at night.  She’ll see us back in a few months to discuss surgery to bring her hand up to 180 degrees (flat).  This will allow her to have a power grip (strength) and better range of motion.  It will never be “perfect”, but it will be significantly stronger than before and have a more normal appearance.  Kinnley will be in a cast for 3-4 weeks after the surgery. 

My buddy Barney

Next was the hip, leg, and foot specialist.  Like before, he brought the troops along.  There was the same intern, another director of physical therapy, and his physician assistant.  This guy was all business. He examined Kinnley for a very long time and said little.  Then he had her lay on her stomach and again looked at her feet from a different angle.  It was clear from the demeanor of the others in the room that this guy was highly respected.  When he was done, he asked Kinnley to walk down the hall for him.  She was glad to get off the table, and strutted herself down the hall and back with a smile, swinging her hair back and forth as she went.  She is something else!  The team talked among themselves about her gait, how she favored a part of her foot, how she adapted, etc. then asked for her to repeat the walk.  She said “again?”, then sighed loudly, shrugged her shoulders, smiled, and stomped on down the hall.  She is such an entertainer!  The specialist said he wanted to review the xrays again.  The team exited and returned after 10-15 minutes.  He was very firm in his belief that nothing should be done to her hips.  He said while surgery could make her “look” great on xrays, the mobility would be impacted.  Basically, her adaptation to this issue is better than any surgical correction could achieve.  Then he moved to her feet.  For those that don’t know, Kinnley had surgery on her feet while in China.  The scars are very thick, and particularly deep across the Achilles tendon.  In fact, I told the doctor it looked like they performed the surgery with a meat cleaver!  The specialist has no idea what they were attempting to accomplish with the backward surgery techniques.  The scars are not in the right (ideal) places to correct the issues she has.  The resulting scar tissue creates complications for further treatment.  Additionally, the bones in the bridge of her feet did not form normally in the womb.  We talked about two options:  surgery to trim bones and fix her foot in a forward position, or a procedure which attaches wires to her bones and slowly corrects the position of her foot over time.  The second procedure looks similar to what you’ve seen with a halo device for head and spine injuries. (There is a term for this device which eludes me right now.  When I remember it, I will update the blog.) The misshapen bones in her feet make this option a bit tricky.  Ironically, it may be best to delay either treatment until she is a little older.  First, it allows her feet to continue rebuilding circulation around the scars (promotes healing after surgery).  Second, it allows her bones to be large enough to support the wires should they decide to use externally fixed device.   The specialist thought it best to have a consultation with the specialist that performs the externally fixed device surgery, then come back to see him in a few months. The doctor talked at length with us.  There was never any rush to finish a discussion and move on to another patient. 

The entertainer

Next, we were ushers up to the physical therapy lab, where they measured and hand crafted a new split for Kinnley.  She’ll be wearing this nightly on her left hand.  The therapist was sure to put mole skin on the edges and soft memory form under the bands to ensure it is comfortable for her.  She also showed us a few additional exercises to try.  In between splint fittings, Kinnley and her daddy played with the race car sets.  Poor Jad, he really does deserve a boy!  Maybe we’ll have a herd of grandsons.  J

Before we could leave, he needed to head down to Photography.  They let Kinnley choose from an assortment of little tank tops and I changed her into shorts.  The goal is to take plenty of “before” pictures of her shoulders, arms, feet, etc.  We look forward to seeing the difference in a year or two!  Afterwards, we changed back into normal clothes and she took an official Shiner’s head shot.  Kinnley displayed a huge grin, enjoying the attention.  Did I mention that she is a ham?  LOL

On the way out the door, we added our badges to the "badge ball" at the reception desk.  It was about a foot thick.  I guess all patients add to it on the way out the door.  I'll try to remember to take a picture of it on the next visit.  The smiling lady also let Kinnley choose from a half dozen home made stuffed pillows on the reception desk.  This brought her "Shriner loot" to total one baby doll, one purple beanie baby, two dinosaurs, one stuffed pillow, and a stack of stickers.  

By the time we walked out the door, we had been at Shriner’s facility for 6.5 hours (including our 45 minute lunch break).  It was a very long day, but we were so glad they did everything in one consultation.  And we couldn't have asked for Kinnley to be better behaved.  While Shriner's accepts insurance cards, anything our insurance does not pay is forgiven in full.  It's so nice to have something pulled off your "worry plate"!  Of course the real goal is to help Kinnley be as mobile and “normal” as possible.  These doctors here are top notch.  Our confidence with the Shriner’s team could not be higher.  We feel so blessed!

The last few days have been a gut check.  On one hand, we hate that our daughter has special needs.  We hate having to hear the prospect of surgeries, recovery, and therapy.  We hate having to put her through all this.  But the Bible teaches us to praise God in everything.  The truth is, if Kinnley were “normal”, the odds of her being adopted would be greatly reduced.  She would have been just another little girl in the sea of “healthy” kids waiting for adoption.  But because of her special need, she was highlighted for adoption.  She now has a loving, forever family.  She is in a country where we can address her special needs and help her achieve her dreams, whatever they come to be.   Without her special needs, she wouldn’t be our daughter.  So today, we thank God for misshapen hands, dislocated hips, and deformed feet.  Perhaps these aren’t special needs after all, perhaps they are just part of what makes Kinnley special.

To God be the Glory.