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!!

Friday, December 2, 2016

An Awesome Opportunity!

Our family was so honored to represent the Ronald McDonald House of Baltimore last night at the lighting of the Washington Monument in Mount Vernon!  Along with the mayor of Baltimore and Steve Smith Sr. of the Baltimore Ravens, we lit the monument and officially kicked off the holiday season!  This is a HUGE deal in Baltimore and there were an estimated 20,000 people there last night!  Incredible!!

Abby was the "official" lighter with a magic wand that caused the monument to light up.  She loved it and proudly held her wand up high in the air!  Caleb actually got to push one of the buttons with the mayor and Steve Smith Sr. to make it happen, so he was thrilled!  

We were interviewed by two Baltimore TV stations!

 Here's one:

I can't find the other one online, but a friend taped it from her TV with her phone and shared it on my Facebook page.  :)

Abby got a light-up wand to do her magic, and the 6 year old daughter of one of the people running it heard about Abby and made her some pixie dust to help with the magic.  Of course, she loved it!!!

 What Baltimore celebration is complete without Natty Boh?!

Thank you to our wonderful friend, Sandy Pagnotti, who is the director of our Baltimore RMH.  She is so fantastic and we are grateful that she asked us to be a part of this!

The fire chief of Baltimore asked to come meet Abby :)

Reagan and Katie Rose of Mixed 106.5 were the MCs of the night, and the kids had fun being silly with them!  They did a great job of sharing Abby's story.  Reagan dramatically said, "The doctors said she would never see.  Well guess what?!  She sees!!!" And the crowd cheered.  He did that for seeing, hearing, talking, and walking, and the cheered got louder each time, then erupted when she actually walked across the stage.  They started cheering, "Abby!  Abby!  Abby!" which was surreal to me, but a little too much for her and she covered her ears.  :)  They interviewed us on the stage and we got to share about how important The Ronald McDonald House is to us.  We love any opportunity to talk about our Baltimore home!

When the big moment came, we got on stage with the major and Steve Smith Sr.  Abby's hidden, but you can see her wand!

We lit up the sky!

It was seriously one of the coolest experiences ever!  We are so grateful to the Ronald McDonald House and love to have any opportunity to spread the RMH love!  

Thursday, November 17, 2016

My Other Job

Today I spent three hours working at my other job.  No, not as an ESOL teacher, although I worked 3 1/2 hours at that job as well.  The job I'm referring to is being Abby's personal assistant.  :)

This afternoon after I got home from my paying job, I had plans to vacuum, mop, and clean bathrooms.  I vacuumed 1/2 of a room before the phone rang.  From there, I spent three hours talking to the insurance company 4 different times, dealing with two different service providers on two different insurance appeals we have filed, giving updates to our Model Waiver case manager, and emailing/calling CHOP multiple times because Abby's surgery date was changed.  Needless to say, the cleaning did not get done.

I haven't shared about the appeals we have made, but they have both been very stressful and frustrating.  One involves us having to pay a large sum of money for Abby's medical care, and the other has become a federal case of fraud against our account (not us!!).  Like I said...stressful.

Add to it that Abby's next surgery is now just 3 days before Christmas and there's a real possibility that we will be celebrating in the hospital.  Throw in an evening of physical therapy, a back full of scars that just aren't healing well, and a little girl screaming from pain that we can't figure out....and you have a very rough day.  I am feeling pretty defeated tonight.

But, I'm thankful for a flexible part-time job that allows me time to deal with all of these types of issues and gives me the insurance to cover so many of our medical bills.  I'm thankful for the little girl who is the topic of all of these insurance conversations!  And I'm thankful that a cancellation and a sweet nurse allowed us to get in to a new doctor on Monday who can hopefully help us get to the bottom of this nerve pain.

Tomorrow is a new day, and it's parent visitation day at the kids' school.  Then we will have a fun-filled weekend with cousins, so the next few days are bound to be better than today.

We would certainly appreciate your prayers for Abby's pain to lessen, that her surgery is uncomplicated so that we can be home for Christmas, and that we are able to win our appeals.

Saturday, November 5, 2016

CHOP Recap

After Abby's CHOP visit on Wednesday where she got X-rays, bloodwork, and a ct to try to pinpoint the cause of her nerve pain, we heard back that nothing abnormal showed up.  Unfortunately, that most likely means that this will be an ongoing issue Abby will have to endure.  She is miserable in the car and I feel so badly that nothing we have tried has helped.  We aren't sure what the next steps are, but we will be eliminating long car rides for a while!

Friday, October 28, 2016

You've got a Friend

Abby's got a great group of friends.  We just love them!!

Oh Tori...dabbing...

Tuesday, October 25, 2016

The Party Recap

Enjoy the recap of Abby's mermaid party!

We had it at our church at the last minute in order to keep our house germ-free for Abby.  It ended up working really well because we could spread out and use multiple rooms.

The food set-up

Sand and Sea cupcakes with sugar shells and candy pearls

Party favors:  sand buckets, glow stick tritons, goldfish, and sand castle suncatcher paint sets

We had a separate room set up with the crafts!  The kids made mermaid shell necklaces and sand art dolphins.

Matt decided to take on the sand art by himself!  Crazy man!  :)  I joined him when we finished the mermaid shell necklaces. 

After we ate some snacks, we went on a treasure hunt!  Caleb and Sara hid the clues ahead of time and the kids just loved going around the children's wing trying to find the next clue!

Abby found the treasure!

The treasure was a necklace, sea glass, shell, and chocolate coin for each kid!

Lighting the candles on her cupcake

"Happy birthday to you..." 

"Happy birthday to you..."

"Happy birthday, dear Abby..."

"Happy birthday to you!"

Oh are an endless ball of laughs!

Time to open presents!

All of the girls liked Abby's Lularoe skirt she got from Aunt Amy and asked if they could share it!

Same thing with the Lularoe dress she got from Nina and Paw Paw! :)

At the end of the party, all of the kids went in to the skylight room to play with the toys int here.  It was so cute!  Even though they didn't all know each other, they played together so well like they had been friends forever! 

Friends and Family shots to come soon!  :)