Saturday, December 3, 2016

Back to Reality

After our incredible night on Thursday, we spent the night at RMH so that we would be close for Abby's appointments the next day.  She had a feeding appointment, a blood draw, and a urology appointment.

The feeding appointment went really well and her therapist was thrilled with her progress.  We hadn't seen her since before school started because of the surgeries and because I was trying to keep Abby in school as much as possible.  She totally understands and supports that, so we will just schedule appointments when we will already be in Baltimore for others.  Abby is eating so well now (thanks in part to her awesome one-on-one at school, who we adore!!), and her therapist actually went as far as to say that she is more or less a typical eater!!  That is music to my ears!  Praise God for that, because there were days when I never thought she would be here.  For a girl who didn't start eating or drinking anything for nutrition by mouth until she was 2 1/2, she sure is rocking and rolling now!  

The blood draw is never fun, and this one was no exception.  The phlebotomist was really good and used hot packs like I asked and stuck her in her hands like I recommended.  (I really appreciate when they listen to me!  I know things!!)  The stick was super easy, but her blood wouldn't run enough.  They had 3 tubes to fill and the blood stopped after just one.  Sadly, they had to stick her again in her other hand.  Thankfully, she got enough with that and the torture was over...but not before Abby started crying for Chloe.  :(

We grabbed lunch before her final appointment of the day, which was urology.  This was a specialty she had thankfully never needed, but she's had some sudden, frequent issues with her bladder that are completely unlike her.  We called CHOP with concerns about nerve damage affecting some things, and they agreed that we needed to get it checked out. It was no small miracle that I called last Monday and got an appointment for that very Friday!!  God had His hand in that phone call, for sure.

After sharing her history with the urologist and discussing the nerve pain and numbness in her legs, he agreed that this sounds like it is related to a spinal cord injury (which is a term CHOP is reluctant to use, but we have thought for quite some time).  He is running a few tests in the next few weeks, but he cautioned me that this very well may be a permanent condition.  If it occurs immediately following a major spinal surgery, it is more likely to be temporary than if it just suddenly appears three months later.  It can be managed, but it will most likely always be an issue.  That was a tough pill to swallow, but we have dealt with worse.  We will see what the tests show in the coming weeks. In the mean time, timers are set for bathroom breaks!

In other news, it appears that the tip of a screw has broken the skin in her back, and another is just a few skin cells away from doing it too.  We've been in contact with CHOP and are keeping a close eye on it.  Her expansion surgery is currently scheduled for the 22nd, but they will move it up if they need to.  Never a dull moment with this girl!!

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