Friday, December 9, 2016

Friday Funny

I recently got my engagement ring repaired and it was returned to me in a ring box.  Matt walked in on Caleb down on one knee with the ring box opened, proposing to...Chloe.  😁

Her response?  She just got up and walked away.

That boy is hysterical!!

Thursday, December 8, 2016

Thanks for Praying!

A strongly worded email and many prayers from friends and family did the trick!  Dr. Cahill called me this afternoon to apologize for all of the miscommunication and trouble.  He offered us the 19th for surgery, which I eagerly took!  11 days...we can do 11 days.

He talked with me at length about what the surgery would entail.  He is replacing the screws with hooks, and then fusing more vertebrae.  Sadly, that means more final height lost...but it needs to be done.  Basically, he is redoing the Shilla and we can expect that the recovery will be the same.  We are fully expecting that she will go to rehab again.  (Have I mentioned that we are still appealing the transport bill from her last trip to rehab?)

It's going to be another tough surgery, but we have a plan.  She will be in another brace that is actually a pinless halo.  I'm sure she will love it even more than the last one.  :)

We do appreciate your love and prayers.  I'm just thankful we have gotten through this.



Wednesday, December 7, 2016

More Bad News

I emailed the nurse practitioner last night to see if Abby's surgery could be moved up because of all of the issues.  She wrote back that there was no room in the schedule and she was actually going to have to be BUMPED until January 5th.  Dr. Cahill wants her to be his only case that day (last time, it took 9 1/2 hours to do this same surgery). There are 3 other cases on the 22nd, so Abby is being bumped.  

I called the nurse practitioner after I calmed down and was able to speak calmly.  I voiced my concerns about waiting 2 MORE weeks when I was already worried about waiting 2 weeks!  I said if she popped 3 screws in one week, what would happen in another month?!?!?  She was going to talk to Dr. Cahill and see what she could do.  She was supposed to call me back today, but she didn't.  

I've cried so much today.  I am so worried something is going to happen before she has the surgery.  I just don't feel right about waiting another month.  

Thanks for your support, everyone.  I'm so sad and frustrated tonight.  Tomorrow is another day and I will get back up again and fight for my girl.  That's what I do!

Tuesday, December 6, 2016

Revision

As I've mentioned a lot recently, Abby has been in a lot of pain and had difficulty with numbness in her legs since her September surgery.  In the last week or so, we have noticed and felt little points sticking up in her back--like the points of screws.  I let CHOP know, but the nurse practitioner said to let her know if we were able to see them. (Isn't feeling them bad enough?!)  After a lot of back and forth and frustration, I finally took pictures last night, now that they are visible, and sent them to the NP.  She took them to Dr. Cahill and he decided Abby needs a revision of her Shilla.

This is a much bigger surgery than we were planning for the 22nd, because it was originally just supposed to be an expansion. We aren't exactly sure what it will entail (and neither does he, until he gets in there), but we know that it will be much more involved and more painful.  Translation:  we will be at CHOP for Christmas.

We'd already prepped Abby for this with the original surgery, just in case.  She'd already thought she would be there for Christmas anyway.  I broke the news to Caleb tonight, but promised that we would all be together for Christmas no matter what.  He seemed alright with that.  Since Santa came early (he brought a new computer and desk!), we don't have to worry about him finding Abby's room. :)  We will bring a few presents with us for the kids to open, but the more we bring up there, the more we bring home!  I will choose strategically!  

We would appreciate your prayers as we face the next few weeks.  Pray that Abby's pain is managed and that the surgery corrects the issues she has been having.  Thanks, friends!

Monday, December 5, 2016

A HUGE Step in Recovery!

On Thursday, Abby will be 3 months post-op from this awful Shilla surgery.  She has really been through the ringer with this one:  between the infection, the pain, the numbness, and the bladder issues, we were really just praying for a glimmer of hope.

You see, 3 months marks the time when our surgeon said her recovery would be about as good as it is going to get.  Given that she still struggles to walk further than from the parking lot to the front door without resting, we were really hoping that she would have progressed farther than this.  Don't even get me started about the numbness in her legs...

But tonight, God gave us that glimmer.  Abby decided that she wanted to stand up on her own without holding onto someone or something to support her.  After several attempts and a whole lot of willpower, she did it!!!

And yes, we both cried.  :)

THIS IS HUGE!!

Matt and I both feared that she may never be able to stand up on her own again.  It's such a simple thing that most everyone takes for granted, but when you have to crawl across the floor to use the wall or a table so that you can stand up...it's a big deal.  And when you're as independent and sassy as this little girl, it's an even bigger deal!

Abby was thrilled with herself and laughed and laughed, giddy that she actually did it.  This girl has more determination in her little six year old body than most adults I know.

There's a lot that isn't going well right now, but this glimmer was exactly what I needed to keep pushing through and choosing joy.

Sunday, December 4, 2016

Acting Debut

Tonight, Caleb and Abby performed in their first official musical.  Theater was an important part of my life growing up, and Matt and I still really love going to see shows.  I love being able to share this with my kids now!

Caleb was thrilled to have a great speaking part in the play.  His character is a Star Wars lover who turns every line into something from one of the movies....type casting?!?!  He has worked so hard and did a really great job!

Abby was one of the little angels and did a great job singing and sparkling on stage.  She learned every line and every word to every song (thanks to having the entire musical on CD so that Caleb could practice with it!), so it was pretty cute to watch her mouthing the lines along with the different characters.  When she wasn't on stage, she was quietly cheering Caleb on and proclaiming that her brother was doing a great job!

My boy was a bit glum after the show was over because he wanted to do it again!  He said he loved bonding with the cast and really had a great time.  The 7 leads spent a lot of time together running lines, and I think he really enjoyed being a part of a "team"!  I told him that I was always sad after a show was over, no matter how many times I did it.

Thank you to all of you who came to see the kids perform!  They loved that you were all there!

I will share pictures when I get them.  I was helping with 4s and 5s and my 3rd and 4th grade class, so there was too much going on for me to take pictures!  My sister took lots, so I'll post them soon.

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!!