Sunday, February 19, 2012

MRI # ??. Even I Can't Remember this Number Anymore.

Tomorrow is Kendall's big day.  Her formula feeds get shut off at midnight and her clear liquids get shut of at 0600, which is about when we leave.  Tonight we start preparing by taking Braden to a friend's house to stay the night.  Anymore, it isn't even something we talk much about anymore. The day comes, and Matt and I both know our roles in the morning.  We have a routine for packing for all day trips down to Cincinnati. Luckily, this time he is coming with me.  I'm glad because I have a feeling we are going to be making some changes with her care.

I can't really even explain the worry.  I can't even say it is worry.  We know she is full of tumors.  We know her tumors are growing.  We know she needs more surgery.  We just do these scans to appease the doctors and help them determine when she needs her next surgery.  Her oncology doctor is still searching for the cancer.  He will redo the urine test to check for an elevated HVA/VMA, which would again lead him to believe even stronger there is still cancer in her, growing, somewhere.

Kendall's sleep has been worse than in the past.  If I think about her demise from sleeping, it all started about the time she had her surgery to remove her bladder.  In fact, I can say that she has not slept through the night more than I can count on one hand.  On average, she is up about 5 times a night now.  It is not just moaning and fussing, it is screaming so loud like something is immediately wrong.  As soon as we go in and turn her, she is fine.  We are racking our brains trying to figure out a solution.  We have bought her a memory foam pad for her mattress.  We have tweaked her meds.  We have changed the way we do her feeds.  None of it has made a difference.  Part of me wonders if she is having nightmares or is scared when she wakes up.  The last time she slept through the night was when we were in Daytona and her and Matt shared a bed.  Funny thing was that I worried she wouldn't sleep at all while we were there.  Turns out she slept the best while we were there.  So it was either sleeping with Matt or it was the healing nature of the ocean air.  I wish I could test the second theory out right about now, but I don't really think that is possible seeing as we are stuck in cold Indiana.  As far as the first theory goes, we can't really test that out either because our bed is just not big enough for the 3 of us.  I have a feeling that where there is 3 of us, there will eventually be 4.  Braden wouldn't want to miss out on the fun.  Hopefully we can find a new solution to try or an answer as to why she will not sleep.

I thought you might all enjoy this video of Kendall.  Matt made it this morning as I was recovering from my night at work.  You can get a really good view of her left leg and what I am talking about with it.  I have just noticed over the past few days that the left leg is about 1.5 inches longer than her right.  I'm guessing the reason behind this is that all of her blood supply to her left leg is being fed through her plexiform tumors.  This means her legs is getting different hormones and really an entirely different blood than the rest of her body.  Her geneticist warned me that it would be possible for this leg to grow differently.  So I'm picturing her as a teenager with a long leg that she drags behind her.  YIKES!  Another reason why I don't think she needs this leg.  Anyways...this video also shows how she is starting to get around in the kitchen.  She isn't able to scoot the car on the carpet yet.  At this point I'm ready to rip up all of the carpet and just put hard flooring down for her.  My second thought is to just sell the house and start over:)
video

Please pray that she handles everything well tomorrow.  I'm hoping for a happy awakening from anesthesia.  Also pray that we come back with some good solutions for her sleep.  The urine will take a few weeks to come back so we will not hear right away on that.  We will probably get results from her MRI at our oncology appointment at 2:30.  They are usually pretty fast.  Once they told me we would have to wait a day and I just laughed.  Next minute we had the results.  I love Cincinnati Children's.  Worst case would be the following day for results.

Thanks for all of the prayers!

Love,
Steph

2 comments:

  1. What a sweet girl. She is amazing. She seems to be doing so good without the use of that leg. Love this sweety so much. Praying all goes well tomorrow. LOVES AND GOD BLESS!!!

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  2. We are all praying and had a special prayer between our pastors wife, my wife and myself this morning. Not only for Kendall, but for your family. Will be thinking of you all tomorrow.

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