hands day

Last week, we headed to Dallas for 4 appointments in one day!
I am so proud of my kiddos.  They endure so much & really are flexible when it comes to eating and napping.  They are both good nappers  & the last appointment went well into naptime.  I figure that could always go either way - either total meltdowns or else super silliness...
Will went the silly & hyper route - okay by me.  I'd rather have a silly kid than a meltdown one!

Our first appointment was at Scottish Rite with a Recreational Therapist.  She has such a cool, creative job - she works with kids & families to help kids be able to participate in whatever fun activity/sport they want to.
Since Will has had trouble learning to ride his bike, I made an appointment with her.  My brain is out of creativity & our local bike store pros were stumped on how to help Will...
Scottish Rite doesn't do "stumped." :)
First, he showed Ms. Dana how he rides:
One of the things I love about Scottish Rite is the lack of red tape & how they approach issues as a team.  Dana called in a very creative prosthesist, Dwight, (who Will knows as "cool hair guy" - he often has a mohawk).  Dwight has been experimenting for awhile for bike modifications & had a great idea to cast Will's hands & create silicone, flexible prosthetics that attach to the bike's handlebars & grip it for him.  Will was nervous to try casting his hands (he hates casting his feet.)  Dwight encouraged him and was able to convince him to let him cast both hands.  
I am so proud of Will.  At one point, he was sobbing and said he no longer wants to be able to ride his bike.  He kept saying he didn't want to do the casting.
I told him (as we have countless times in his little life) that sometimes we have to do things we don't want to do.  
Casting doesn't hurt - it's just uncomfortable and scary.
Sometimes I hate that he learns these lessons so early on.
When he was all done, I surprised him with a superhero card & a little superhero toy.
He is my hero.
Cast care while hanging out in Will's exam room.
Very cool tape she's sporting, huh?   More to come on that fun surprise I received!

Excuse the terrible photography skills.  I only had my phone with me.
Will did great for x-rays this trip.  He loved his little lead cover so much that he asked the tech very nicely if he could wear it in the waiting room to show off to his new friends there and his Lovie.

Ellie amazed Dr. O. with how much her hands & wrists have improved in the last 3 months.  He actually thinks she needs one less surgery!
She will probably have one surgery on both arms in about 12 months.
Despite only getting a short 15 minute nap, she was very happy & showed off all her tricks.
Will's appointment went great as well.  Just before Dr. O. came in the room, I asked Will if he had anything he would like to talk to the doctor about.  I want to empower Will and allow him to build a relationship with his doctors.  I was floored by the question he told me he had.  Since Will was a baby, we've considered a possible surgery for him.  We've gone back and forth about it & have been unable to decide.  We've travelled to Boston to get second opinions and seen specialists at Dallas Children's as well.  We saw the world's premiere hand surgeon in Boston.  We've researched and prayed and debated. What we haven't done is discuss it with Will.
Some parents choose to allow their children to assist in making elective surgical decisions.  Our position has been that if he were older (age 10 maybe?) we might ask his opinion but as a little kid, we feel like it is our responsibility to make these decisions for him - he could too easily be persuaded and we are the parents... it's our job to make these decisions.
So, we haven't discussed it with him.
But the question he told me he had for the doctor? 
It was exactly related to the possible surgery we've been considering!
So, I told the doctor when he walked in that Will had questions for him.  I was so pleased with how the doctor responded to Will.  He was honest with Will about Will's hands.  He treated him with respect and dignity.  He spoke on his level and directly to Will.  He really listened to Will.
And as he watched Will and examined him and listened to Will express his desires,
this doctor who has always been conservative & has not been a proponent of the surgery,
suddenly, he was all for it.
So, we are still praying and weighing all options but it really felt like two huge confirmations today - Will's verbalizing and the doctor's belief that it would help accomplish his goals...
big.  This means all our doctors here & in Boston are on the same page (though Boston is more aggressive & extensive)
If we do it, it would be next winter as Will would have to spend 3 weeks in arm casts (no way in heck am I putting him through that in a hot Texas summer.)
And I would want to fit it in before Ellie's upper surgery & her arm casts - I can't deal with two kids in casts at the same time.
("Hello, Mental Hospital?  It's me, I'll be checking in next March, please.  Just hold my room...")
I was so pleased to hear that our doctors are agreeing after 2 years of discussing this & that Will is wanting to do things that the surgery would enable him to do.
kind of exciting.
And I am so proud of my 3 year old.  Most kids his age probably don't communicate with their doctors very well, if at all.  I am just so proud of him for verbalizing his goals and talking to his specialists.  I think this will be very important for my kids - that they feel the freedom to talk to their doctors and that they have honest relationships with them.
It really amazed me that his questions he had for Dr. O were precisely about hand related issues.  He wasn't silly or off -topic but was really paying attention.  I'm so proud of my boy.
After all our appointments, we headed up to administration to deliver Will's money he earned from his lemonade & cookie stand.  Then, we went to see our friends in admin.  Becky showed us this fun poster she has in her office.
Look at Mr. Cheesy up on that wall!
(Thanks Becky for posting Will in your office!  We love you guys & TSRHC!)
And in the car, both crashed hard!

5 thoughts:

Mike and Christie said...

We had 3 appts in 3 days and I'm exhausted! LOL
They are so adorable! It is always fun to see pictures of those we know at Scottish Rite. I just love those who do so much.

Miles said...

What troopers you have! (and I know that Becky-what a small world) :)


kelly said...

cutie pie littles!
i bet you were so proud of will - wow!

gtown1 said...

Go Will--that is amazing--you do have one smart ...precious boy! :) Thankful all of your appointments went well. Wish we were there to 'zoo' it with you like one fond April day I'll always remember when the boys were babies. :)

Anonymous said...

that is so encouraging katie!
you are such a good mama - the way that you navigate yourself and your children through this unique journey is amazing.
your an excellent mom.

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