Counting Down

We have 9 days until the big day.  Today we went to Kendall's pediatrician to have her ears rechecked and get her pre surgical physical.  Everything checked out fine.  She still isn't sleeping well.  Some nights she is up 10 times, other nights only 4 times.  I'm starting to doubt we will ever figure out how to consistently get her to sleep through the night.  

Kendall and Braden both had an ok Easter.  For the first time since I can remember, we didn't go to church on Easter.  Kendall was up 2,000 times the night before and quite frankly, it was hard to get the motivation to even take a shower the next day.  Braden had a pretty candy free Easter.  The stupid dog decided to jump up on the table and eat every last piece of candy out of both of the baskets.  Now instead of obese, I'm sure she has bumped up to morbidly obese.

  

So, for those that don't know, Kendall's surgery is April 25th.  We will have to be at Cincinnati Children's at 5:30 am.  She is having the same type of surgery she had back in November.  They will go into her lumbar spine and remove the part of her large plexiform that has invaded her spinal column.  Picture removing a leaf off of a tree, this is the best way I can think to describe it.  The tumor is huge and we are only able to remove a very small portion of it.  After her surgery, she will be in the PICU for at least 24 hours.  Last time we were moved out faster than we expected.  As sick as it sounds, I have comfort with her being in the PICU because she has constant care and she is usually sedated enough that I know she is comfortable.  I get my best night's sleep in the hospital when we are in the PICU.  After the PICU we will go to the same floor as we were on last November.  She will probably be there 5-7 days in a perfect world. After the surgery, she will have to wear a brace that keeps her back stabilized.  It will have a hard front and hard back and will be the biggest PAIN!  She has to keep it on at least 6 weeks.  There really should be no difference in her strength once she heals from surgery.  The tumor is pressing on her nerves in her spinal column but it doesn't appear that it is what is causing her left leg to have pain and not work right.

This surgery will be so different from the others.  She is so much more aware of things.  I've actually wondered how to tell her what is going to be happening to her.  If we go to the store, I tell her.  When we go to the doctor, I tell her.   I'm sure I'll figure it out.  I also don't usually take advantage of child life while we are in the hospital.  This time, I'm going to have them come in more with activities.  It's going to be hard to keep her entertained all day long by myself.  

Kendall LOVES to color.  She colors her paper, desk, chair, and body.  Here are a few pictures of what I came back to after leaving her alone for a few minutes.

She also is starting to take interest in the Wii whenever Braden is playing his game.  The rule is, when Braden is playing, Kendall can play too.  The only catch is that we take out the batteries in the remote so that she doesn't turn off the game while Braden is playing.  We learned our lesson the hard way on that.  Her favorite game is Lego Indiana Jones.  Probably too violent for her age, but she's got to get her frustration out somewhere.  

If anyone is interested in getting Kendall something before surgery or after surgery, please consider making a donation to CTF in her name instead.  I promise she will thank you one day.  To get to her page, just click here.  We have a long way to go with our fundraising this year.  I haven't been very motivated to do it lately.  If you live around the Indy area and you are interested in signing up for the walk or the run, please click here.  We are lacking in team members for Kendall's Army.

One more link...if you are interested in seeing the pictures we had taken a few weeks ago, click here.

That is it for now!!  Thanks for the prayers. 

Steph