Libby's Hobbit feet

Tomorrow is Libby's Achille's Release surgery.   She has been nervous, scared, and almost excited.   Every new procedure is scary.   She shows how worried she is about something by refusing to help with getting dressed, by refusing to eat, by refusing to potty, by generally being a butt head.  Think of the limp noodle position that protestors used during the 60's.  What makes this a little bit harder is two fold: she isn't swallowing well so we are on modified soft and thickened food/drink diet and the kid has to potty.  You can smile now as we have practiced who lifts and who wipes.    

(We will be alternating those jobs using rock, paper, scissors...) 

 She knows we have been lifting and working out more to get ready for the dead lifting we will have to do.  At first she won't be able to stand on her feet at all, which means that when we transfer from wheelchair to couch, wheelchair to toilet, wheelchair to car, wheelchair to bed- we are lifting her.    Our practice sessions are hilarious, at least to us. 

  Always want everyone to know why we are doing what we are doing, here is a picture of her cute hobbit feet.   They're all turned in. 

This is the resting position, there are calloused in the outside of her little toe from walking. 

The hammer toes come along with her spastic retraction and her Parkinson's toe walk.  Her foot does not go to 90 degrees. Hasn't for a long time which is why we have worn AFO's, had Botox, and therapy. 

https://www.aofas.org/footcaremd/treatments/Pages/Percutaneous-Achilles-Tendon-Lengthening.aspx

Here is a good link for information.  

What a freaking blessed journey we're on.   And yes, I did shave her feet. 

Moving on

We are still processing the fact that Miss Liberty did graduate.    It seems so unreal and sublime.  The moment she did her walk to get her diploma and then made it safely back to her chair I felt as if a million pounds had been lifted from me.  Her goals when she agreed to have the Deep Brain Stimulator's implanted were to dance at her senior prom and walk the stage. And heck yes she did both.   We had the amazing support of every senior at Caprock cheering her on every step of the way.   We also had the amazing support of the staff and administrators who totally get the belief that 100% means 100%. Every kid matters.   Could not be prouder of this astounding group of people! Grandma Linda, Jennifer, Xavier, and Jasmin,  Mariah and Tyson, Jeff, Thomas, and Kim Davis, and Beth Garza were at her graduation showing their never ending love and support. We would not be able to function without the endless strength and love from Rachael. So much has happened in the last five months that I didn't know if we would make it to graduation.   This post is about one of our battle fronts.

One of the forces we have been waging against is the contraction of the muscles in her legs and feet.  She has had AFO leg braces for four years and been getting Botox injections every three months for 18 months.  She has continued with therapy in school and walked as much as possible.  Still, her Achilles contracture has increased.    

The therapists through school did not want Libby in her AFO's because her muscles were pushing so hard against the form of the braces that she was getting skin breakdown and bruising. On April 15 we were told that Libby should not wear the braces unless we were transitioning between sitting positions:  from chair to potty to chair to car and so on.  A few surgical options were offered, but mostly Libby was to be sentenced to a wheelchair full time.  That was a week before her Prom. 

We broke the rules and she continued to work on walking with her braces and somewhat without.   Often her left foot is supinated to a point that she could walk on her ankle bone.  Her left foot also drags.  

She reached her goals and danced at her prom and walked the stage. 

http://youtu.be/-Uk2O5Gxd6g

"Wake me up"

I will not give up until every avenue has been scouted and every tried. 

We met with a local Bone and Joint Specialist, that was Senior Day, May 15,  who scheduled us to see the surgeon he works with. We met with the surgeon yesterday and Libby will be having Bi-lateral Achilles' tendon release surgery in a few weeks. This will happen here in Amarillo. This is a day surgery and will be relatively non-invasive. Except the little fact that I skipped right over.  

Libby

Will

Be 

Sporting a 

Calf 

Length 

Cast on

BOTH

Legs for up to 

SIX weeks. Yep.  Skipped right over how we are  to move her around since she shouldn't be involved in any weight bearing movements. Yep.  We are looking into how to transfer her safely and how that will work.  

Libby's only question was if she could have a different color cast for each leg. Mine was if I can still shower her if I keep the casts dry.   No thinking at all about how we would be getting her into and out of the shower- or anywhere.      

Logistics aside she will get some relief and hopefully we can keep her active and upright for as long as possible.  Today we began intake with a new therapy place and tomorrow we head to Ft. Worth to get her Botox and her battery charges adjusted.  

Please know we are immensely grateful for all of your cards, calls, texts, emails, thoughts, prayers, nods, and general kindness.  We are truly blessed and will begin "Operation Lift Libby" practice sessions soon. Funny videos to come...

Well, maybe we inadvertently already began our training.  Be blessed.  

Move onward toward college goals, art exhibits, and more life!!