Friday, June 22, 2012

Sara's New Medical Report

Yesterday Sara and I spent the day at the hospital doing some routine testing to check how her tumors, and body as a whole, are doing.  Sara was a trooper and did great during her MRI and was good with all her doctors.  As there always is with NF, there was some very good news and some not so good news.

Let's start with the bad news so we can end this post with the something amazing part!

Sara has to have another surgery!!  I'm so bummed, but I'm not surprised.  I've had a feeling this has been coming for a while.  Sara has to have surgery on her left hip...which involves power tools, and has a long recovery.  It will be difficult and take everything we both have to overcome the very long recovery.  But together, and with the support of all those around us, I know we can do it.

The surgery itself will be the scariest part, but also the easy part.  The doctor plans to cut off the top of Sara's femur, realign it at a new angle, and reattach it so that it will finally stay in the socket.  Sounds simple right...and that part is. 

The hard part comes afterward.  It involves a spica cast (and I know any one of you who knows what that is is cringing) for 6-8 weeks.  For those of you who don't know what that is, its a cast that will extend all the way around her body from the bottom of her ribs all the way down both legs.  It will make her completely immobile, and its going to be awful.  She will have to ride around in a specially designed wheelchair, and live in a reclined position for the entire time.  It also involves a special seat in the car any time we go anywhere.  And then there is all that PT afterward to get her up and moving again!

At this point, the plan is to wait till the end of the school year and do the surgery over the summer.  This is to avoid missing school.  We will x-ray Sara's hip again in early Dec. to see if there is any change.  If there is, we will be forced to move her surgery up and do it over winter break.  If there isn't, then we will stick with our plan for the end of the school year.

Now on to the good news!!!

After an initial look at her MRI, Sara's tumor shows NO GROWTH!!  Woohoo!!  We still need to wait for the official report from the radiologist, but her oncologist is confident we won't see anything different from last time.  Yea!

We also saw the orthodics team, and they fitted Sara for new shoes.  So we should see something with that in a couple of weeks.  We have to do some trial and error because we are trying to figure out how to get an actual shoe on Sara's right (larger) foot since she will now be attending school.  I'm sure he will come up with something that will work great!

And the really big news is that Sara has gotten her new walker now!  She is so very excited, and had the biggest grin on her face when we went to pick it up yesterday.  I thought you all might want to see it for yourself. 

Sara's new walker is much different than her last.  She pulls it behind her, and it makes it MUCH easier for her to steer.  It also takes less energy to move since it has four wheels, instead of two with the peg legs.  And best of all, it has a fold down seat she can use when she gets tired.  It takes Sara about 30% more energy to move around than it does a "normal" child.  So she becomes tired quickly.  She's sitting on the little seat in this photo.  It isn't for sitting as much as its just for leaning on to take a small break.  It has black paint with sparkles in it, and I heard Sara telling the kids at daycare this morning as I was walking out not to get to close cause she didn't want them to scratch it.  LOL!!

It was a crazy day, full of ups and downs, but it was nice to end on a good note with that beautiful smile!


  1. Cookie might want to contact her about making some spica cast pants for Sarah. She is an amazing woman who made some for Joey. (I follow her blog)

  2. Yea for NO GROWTH and the walker!!! Love that news. :) Have you looked at Keeping Pace brand shoes? T wears those now and the inserts can come out to give him more room.

    Hugs and celebrating the great news! Also hear to listen for the surgery part.