Tuesday, June 3, 2014

Callie update

Callie is struggling a bit.  Growth spurts are always hard on her, and her last one seems to be even more so.  Combine that with the unknown reason that those with cp have a tendency towards bad teeth, and bingo!  You have a recipe for Callie's current predicament! 

Last week, we ended up at Children's hospital 2 days in a row...because they couldn't get in her both quickly and coordinately, which is something they try to do!

On Monday she saw their dentist clinic.  She actually needs to have a sedated dental appointment to get all of her work done, which will ultimately require that she gets shiny metal caps on all of her molars...she is excited that the cavity that is hurting her will be fixed, and she likes the metal crowns that she will get on her teeth!

The hospital has a pretty awesome sibling play room for ages 3+.  Callie was very sad the first day that I did not leave time for her to play there...but we did find these clowns in the hallway that kind of made up for it, lol!

The following day, I made sure to give her at least a few minutes to play.

This appointment was one I had greatly anticipated!  Her left foot, the one that she relies the most on, is kind of falling apart on her!

We saw a foot doctor, Dr. Moore the previous week (the one who fixed my foot!), who took x-rays and showed me where one little bone in her foot was grossly out of place.  It is so out of place that it is actually pressing into the growth plate.  He said that if we couldn't get it stabilized, then we would be looking at surgery, and soon, because her foot cannot grow like this.

So back to our children's appointment...they were an hour behind schedule.  So the doc really didn't have much time.  I asked about growth plates being pinched (they wanted their own x-rays because they don't trust the job that others do).  She said that would really not be very likely, and surgery to fix the bunion is not an option yet.  Our best option is to let her use her wheelchair as much as she wants, to mold her AFO's around her deformity (the goal is no longer to keep her foot in a 'neutral position' - we have lost the ability to do this), and give her pain meds until as far out in the future as possible.  She said that surgery now would be detrimental.

Dr. Moore followed up with Callie yesterday, after doing a 'leg length study'.  (This is something I wish I had a video of...Callie was expected to stand, with her feet straight, and hip to shoulder width apart, heels on the ground and against a Plexiglas wall behind her, and her knees straight.  She did the very best that she could, and I had to keep regripping her legs/hips/whatever I could, to help her maintain the position.  Any movement at all, and we had to start the series of x-rays over again...then she had to hold the position while they developed the x-rays...one of which came back not ok because the little shield they put on her, covered what they needed to see...so she had to keep holding the position and retake it.  Fortunately, she laughed through the whole thing.  For Callie, this looked more like an intense game of Twister, lol!)

The leg length study came back with her left leg being longer than her right.  The Dr. Moore said he suspected that very thing in watching her walk and then seeing the x-rays 2 weeks before...he thinks that by simply putting lifts into her shoes, we might just be able to stabilize the foot, and remove the pressure from her growth plate.  This is wonderful news!  We are praying that this really is our answer!

She is starting with about 3/8th of the total that she needs for the first 5 days, the moving up to 5/8ths of her total lift for the next 5 days, then I will be putting the two together for about a week before heading back in to see Dr. Moore, when we will hopefully see some good changes!

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