For several years now, Will has clearly expressed his desire to someday be able to hold more objects and write with one hand.  He has articulated this to doctors and surgeons and us.
So we have worked with several surgeons around the USA trying to determine if this might someday be possible for Will, and if so, how to help increase his function to make that possible.  
The surgeon we chose is excellent and is being very creative to help Will get as close to possible to his goal.  We don't know for sure what the final outcome will be but we know he is resourceful, creative, strong, and determined.  Our goal is to increase his function as much as possible to give him the best possible chance to reach his goals.  

In preparing for the next 15 weeks of kids in casts and 3 surgeries, I took many of your ideas and made the kiddos grab bags this week.   I tried to fill up the bags with little activities and ideas of things I think they will be able to do in casts.

I'm anticipating Will's situation to be very difficult and have a great dependence on assistance while he is casted.  He pretty much uses both hands and arms together to accomplish most tasks so with one hand and arm casted, he is going to need a lot of help to do the most basic of tasks.
So, his bag is filled with new chapter books and movies and a kite, and activity books (to do with me), & some new Leapster games.  (I'm hoping he will be able to operate his Leapster.)
We're trying to do some of his school work ahead of time in anticipation of him not being able to write while in a cast so his pre-op bag o fun is full of school work.  
Someone suggested I do an "elf on the shelf" with stuffed animals who make mischief every day that the kids are recovering.  What a fun idea!  I found these two guys - a super turtle with a "W" (perfect for "Will" who is so into superheroes and ninja turtles!

 and a little princess (Fancy Nancy, I think?) girl for Ellie.
I think it will be lots of fun to use these guys around the house.  Hopefully, I'll remember to place them daily - our elf was kind of lazy & forgetful during the Christmas season!

Ellie went with me to Barnes & Noble the other day - notice her purse!  Such a girly girl!
We picked out lots of new books and some audio books for Will.  (Thanks too for the idea to try audio books!)

I hate handing my kids over for surgery.  Fortunately, they have both been through enough surgeries for me to know that they can handle anesthesia without major side effects.
Unfortunately, I also know, therefore, that anesthesia makes them very anxious and sick to their stomachs.  They have each thrown up on me in post-op.  It also makes their eyes wild and they both wake up very scared and confused and with awful crying.  I hate that.
It also takes them each about a week or so to work the anesthesia out of their little systems and I hate dealing with those side effects.  

I think handing over a child to surgeons is one of the most difficult things we do as parents - maybe it is the loss of the control or the fear of the unknowns and all the what ifs that you know could go wrong.  With little ones, I feel terrible - like I am betraying them.  They wake up one morning confused as to why they can't eat breakfast and before they know it, they are waking up hurting and in pain and in a cast from surgery.  

Though no one else may really notice it, Will's handprint will be slightly changed.  I'll notice - I'm his mama and I adore his handprints.
My heart pretty much breaks every time I hold his little hand lately or try to imagine exactly where it will be different.
We've been doing lots and lots of handprint crafts.  I just want to remember exactly what it looked like for the first 5 years and 5 months and 17 days of his life.

We've done paint crafts and even went to a pottery place to make clay impressions.

(Ellie will be having surgery on her arms as well so we did her hands too.)

We also made ornaments before Christmas with their handprints on them at the pottery place.

We leave early tomorrow for Dallas.  Would you please pray for us if you think of it?
Pre-op is all day tomorrow & surgery is early Friday am.

We sat down with Will last night to explain to him what is going to happen in surgery.  We wanted to be honest with him but also careful with his heart and mind.  
His very first question?
"Is the surgeon going to execute me?"
What?!?!  We asked him what he meant and what he thought the word, "execute" means and where he learned it.
Thanks, Disney & Mater's Tall Tales for teaching my kid the word "execute."  The movie apparently uses it in terms of a rocket.
Without really explaining the meaning of the word (he wasn't using it correctly in context & we didn't think he needed to fully understand its meaning,) we reassured him that he didn't have to worry about that.
He reiterated that he wants to be able to write with one hand.  We tried to prepare him that this surgery may not enable that  - this is phase one of a potential series.  We didn't want to set him up for disappointment.
He then asked if the surgeon could make him extra fingers so afterwards his hand would look like everyone else's.
Gut punch.
Then, he wanted to know my hand looked like his when I was little and later grew into a "regular" hand.
Another gut punch.

We told him we love him just as he is.  We told him we love his hand just as it is.  We told him we want to always do what is best for him and to help him as much as we possibly can.

Would you pray for all of our hearts as we do our best.  These kind of things aren't covered in parenting books and we don't really have any friends or family who can offer advice or how tos from their own experiences.  We so want someone to just tell us what to do sometimes or tell us we are doing the right thing as we make these awful decisions.

Thanks to so many friends and family who have been so supportive and have given us so much love and encouragement and trusted us to make good decisions.

Thanks for praying for my boy and our hearts this week.

Off to the planetarium - it's field trip day!

1 thoughts:

Sharon C said...

I'll be keeping your beautiful, wonderfully-made precious children in my prayers over the next days and weeks. I know you often say Will and Ellie are the true heroes, but you are the "wind beneath their wings" that never lets them give up...that believes in them and celebrates every accomplishment and every day the Lord blesses you with. God Bless you all!

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