I HATE that word especially when it applies to my baby. Ok - she's five, but she will always be my baby.
Here's the why of it that I hope one day Ellie will understand:
This is a regular scenario these days. Ellie is sitting on Dada's lap reading when she sits up straight, pushes the book away, and reaches out for her Pony. She literally put her hand around the handle and pet it! And smiled.
Dave said, "Oh, do you want to go in your Pony and do walking?!"
To which Ellie replied, "Squeal!" With a big smile and dystonic arms out head side to side.
I know that reaction is because of the CP - but it leaves you no doubt as to her positive enthusiasm that you have figured out what she wants.
So Dave, painstakingly puts on the right socks, then carefully but very firmly puts her in her AFO's and the little shoes that fit over them. She gets in her Pony and heads off to a visit to the bathroom. I must take a picture so you understand the draw. For one the shower curtain is covered in ducks - which she loves and also it's a small little room. I remember as a kid liking small spaces too. Maybe she is also trying to tell us she is interested in potty training! hmmmm - that just occurred to me- ok I am all on for that!
Anyway - she makes it there by moving her feet forward then pushing up. She even gets in a few one foot first then then the other proper steps in to Dave and my cheers. (You'd think the Red Sox won the world series again! Well they did so that was nice coverage for all the screaming). Ellie was able to get to the bathroom - which was about 10 feet from where she started. She had a look of wonder when she got there, had a good look around then a look of pain hit her face and she scrunched her arm over her right eye. This is her indicator that we need to get those darn AFO's off NOW please!
Dave took them off and massaged Ellie's feet that immediately went back to their equinovarious posture. It hurt her to be in those AFO's for the 10 minutes she was in them.
And you know what, I dare say if they didn't hurt her there are other small spaces in our house she would like to explore as well as pull all the toys out of the bins that being upright in the Pony allows her to access. But that's it for the day. We have to let those feet get back to their normal color.
So there it is. What would you do? She wants to walk and I want to help her.
In my last post about this Penny, rightly discussed the other dangers of not doing these things in her comments. Ellie's bones have not fused together yet - but should I let them? I think no. The exercises from Advance are helping her tremendously - but they are not helping her feet - yet - they reach the extremities last. Her hands have been helped but her worst area of high tone is in her ankles and feet. Also note that her hips used to be really bad and her wrists - but the hyperbaric treatments and the Scotson Technique have helped all of that.
So here is what we are doing.
It turns out that they guy in New Jersey is not the only one in the country doing PERC lengthening. This is the least invasive way to lengthen the Achilles tendon. It is laproscopic and will leave minimal scaring. In doing it the doctor will basically take small chunks out of Ellie's tendon to allow it to loosen and weaken. When ever you mess with any tendon in this way you weaken it for LIFE - it will never come back. This greatly concerned me so I asked him how much it would be weakened and he said if you could isolate the muscle and tendons in the lab you would see a decrease in strength by 5-10% but that it's very hard to measure in humans. Having gone through a similar operation - actually a far more invasive one - my tendons don't feel all that weak - so we will live with that risk for Ellie. I am so so thankful that this technology has come such a long way since I was 13.
The other thing we have to do which is more invasive is a post tibial tendon recession. This is the tendon that is pulling her toes in. The PERC will take care of the tendon (Achilles) that is pulling her heal up. The posterior tibial tendon recession requires a regular incision that will be about an inch long on the inside of ellie's ankles. I loathe that we are doing this optional surgery and that she will have scars and pain from it. This recession part is more invasive than the PERC.
While under Ellie will get casts on and wear those for 4 weeks and go back then, get molded for AFO's and be recasted until the AFO's are ready - approximately 2 weeks.
We will give her Tylenol with Codeine for the pain at home.
The surgery is at 10am tomorrow.
Today I am taking her to get one hour and fifteen minutes of Hyperbaric Oxygen therapy going down and staying at a depth of 24 feet. This will greatly support her blood oxygen saturation levels during the surgery. Then on Wednesday through Saturday I will get her this same treatment once a day. This should greatly induce tissue healing. 24 feet is optimal for tissue healing. Thanks to Linda Scotson at Advance for this advice on the level to go to. Dave and I knew we had to support Ellie through this with the HBOT therapy. But I did not know the protocol.
Also, I will be using some cleansing herbal teas for Ellie to support her system in processing the toxins her body will received from the anesthesia and pain meds and natural ones that will be produced due to the trauma of surgery. I know I will be giving her fresh carrot juice as part of this but not sure on the rest. I will be sure to let you know in my follow up post.
So there you have it. We are doing an elective surgery on my daughter. I am hoping it will buy us at least 4 years of stable feet in the neutral position they need to be for walking. I a hoping that in this position they will send better signals to the brain - because this is in no way a cure for the CP - which is why I loathe it. It's a management issue. Yes - I am managing my daughter's feet so she can walk - but only because she has made it clear to me she want's to.
From the razor's edge to your ears. Send us healing thoughts!