Cast Off Update

We had lots of appointments today at Scottish Rite.  

Will was first & had a great appointment.  He voiced some concerns to his doctors & was very friendly with all of the team.

There is not a shy bone in that boy's body.

He loved having an audience to perform for!

He did his ninja tricks (above photo: "Kicking Donkey" & below photo:  "warrior pose")

 His doctor, Dr. Herring (chief of staff too) even got out his iphone & videoed Will doing his tricks.  Pretty cute!

Love that he is building relationships with his doctors.

He is ready for new zancos (yay!!!) but, unfortunately, his prosthesist was off today so we will wait about 10 days before starting those.

 Sweet siblings shared silly smiles and laughs 

And...

Ellie had her cast removed!  They used a special cast saw & she sobbed.  

There was some dried poop on her legs (yuck) & a stench.  There is are a few bloody spots where the cotton was too tight in her leg rolls and folds.  There is some skin breakdown - lots of big patches of red, bumpy skin.  She is extremely sore and tender.  I bathed her sort of in a sink in the infant bath room at the hospital but she screamed through the whole thing & I couldn't bear to try to get off the dead skin with her screaming.  I'm hoping in a few days her skin will be less sensitive.

She seems extremely sore and has apparently lost all muscle in her core and her legs.  Pulling her up to a sit or to pick her up causes screams of agony.  Basically any motion brings her great pain right now.  

I've read that this may last for several weeks as she begins rebuilding muscle from nothing.  

Emotionally, it has been very hard on us this afternoon knowing she is hurting so bad.

I think, too, that she (& us) have been so used to the cast supporting her that it is weird to not have that support.  She has no strength to support herself but had become accustomed to the support provided by the cast.

It will take some getting used to and strength building.

( & patience on my part as I want to be able to put her in chairs & bouncers & bumbos & exersaucers, etc.)

 She weighs 16 pounds!!!

Her legs are so beautiful!  Her bottom is precious.  Zerberting her tummy has never been so fun & brings  loud laughter & a reprieve from crying!

The cast has been cast off in the trash below:

While in many ways today was a great "victory" day, it was still hard in that it is not over.  After her little bath & a quick feeding (oh so nice to hold her close to feed her & not have a leg sticking up by my head,) we took her to therapy for stretching, therapy, & taping & new splints.  

Because I would have to remove her tape to bathe her, I have resisted my great desire to really soak in a tub with her.  I just don't have it in me to force her through the pain of tape removal & redoing her tape tonight.  I'm going to wait until she is less sensitive to touch and motion.

It was hard on us because we didn't get her cast off & just come home.  We're back into the routine of frequent hospital visits for splinting, taping & therapy at home daily.  Her legs are once again covered up - 22 hours a day.

Once again, both of my kids were troopers - we left the hospital over an hour past nap time & they both did great - asleep before we pulled out of our parking spot at the hospital & they each slept the entire way home!

As hard as today has been, however, and as much as I hate knowing she hurts, I LOVE being able to hold her close and feel her back and bottom and tummy against me.  I love that she can snuggle up to me as I hold her.  

Thanks for praying us through spica season!

Now, it's back to splint season (& new zancos coming up!)

***by the way, we will be moving into our home during the next two weeks so I will be posting some super fun giveaways!  Stay tuned!!!)

fun times at TSRHC today waiting on doctors

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