casts and a tiny piece of silicone

Alrighty, for those of you not on facebook or for those of you craving extra details, here I go.  We have struggled for years working with the owner of Dynamic Orthodics to get a good fitting AFO (foot brace) for Kylie.  It never works.  Over this past summer her ankles continued to turn in horribly to the point that Tom, said owner, gave up.  He said he can no longer fit her.  I left in tears but determined not to give up entirely yet--meaning, stop all physical therapy and buy a wheelchair.  By the way her physical therapist dropped her in late July also.  It's been rough.  Well, we finally got her in to see a pediatric orthopedic surgeon last Friday.  The one Tom recommended.  We had heard of the idea of serial casting before and here we are.  We went last Friday and left with two bright pink casts on her legs.  Basically the surgeon stretched her foot and ankle (while David, a nurse and I held her down) as far as he could and then they cast it.  NOT PLEASANT for anyone involved.  Especially not her.  She cried most of the rest of Friday and ALL that night. There was very little sleep happening.   David had scout training all morning and afternoon on Saturday until about 2.  He was exhausted.  I was worn out.  She didn't even have a voice by Saturday morning she had screamed so hard.  She then realized she had some more support with the cast and stood up at the kitchen counter and pulled a loaf of bread off.  She then emptied the bag in the living room and just made a terrific mess.  That was my straw.  That only 7 minute clean-up was my final straw.  I lost it.  I am recovered now so don't worry...
As a side note, she did have physical therapy again on Monday...thank goodness.

Well here she is...they gave her the little doll. 

But now there are other new worries.  She will be cast for 6-8 weeks with the stretching and re-casting happening every 2 weeks.  Problem 1). Her toes have never been in this kind of alignment so they are rubbing differently and scraping the ground differently.  We've had 2 days of very bloody toes until I learned to put big socks over her casts.  2).  Bathing her.  Her favorite time of the day is now a two person job.  Yay.  Just what we needed, something to take up more time.  To be honest with you folks, we've started bathing her every other day...it just can't happen daily.  3).  The biggest one.  She typically pulls her tube apart at night, every month or so.  She'll wake in the night and pull the tube out from the extension and it makes a horrendous, smelly, wet mess.  I love laundry...  Well now that is our greatest fear.  She doesn't sleep well at all with these casts.  The casts can't get wet.  She's already pulled it apart  twice in the last 4 days and luckily we have caught it early enough or just been blessed where the casts are dry or just barely wet so a hair dryer could take care of it.  We're not sleeping well.  Not well at all. 

Well, in comes this new $150 tiny piece of silicone.


This will be our life saver.  I hope.  It is supposed to stop her from pulling it apart and from what we have read online, from other parents, it works!  I really hope so.  By the way, someone is making a killing off of that tiny thing.  So, it's been ordered.  It should be here in 1-3 business days.  We're hoping for the 1 and not the 3.  Oh and insurance is covering it, we'll just pay $15, thank goodness.  Hey little tiny piece of silicone, what took you so long to find me?  My washer and dryer are breathing big sighs of relief...