Friday, August 29, 2014

CHOP update

Abby saw Dr. C this morning and he said her incision was fine.  It's not healing quite the way he would like, but it's not infected and they're just going to leave it alone. She'll continue with the antibiotic for 2 weeks as a precaution.  She does heal slowly and agrees with what our pediatrician said yesterday about her maybe having ongoing wound issues. 

Therefore, her next veptr attempt will be held off until December 30th to allow her time to heal. If we schedule it earlier and she isn't completely healed, they would delay surgery anyway.  Hopefully, the incision will be totally fine by then (just in time for them to open her up again!)  

Not exactly my first choice, but at least she will be home for Christmas.  We will be living it up in the hospital for New year's! :)

12 Days in Africa by Lisa Sanders

12 Days in Africa is a memoir of a mother's journey with her teenage son to Uganda.  While there, she experienced grief, suffering, and a simplicity that would change her life forever.  From the joy she felt holding a little girl's hand to the anguish of holding a dying boy, Lisa shares it all.

While I enjoyed some of the stories shared in this book, I really had a hard time getting past the lack of structure and the many grammatical errors throughout.  I felt like I was reading her personal journal rather than a published book.  Considering this is not a pre-publication copy like others I have received, I was really surprised at the way the book jumped around.  The numerous grammar mistakes were distracting and took away from the overall beauty of the book.

Wednesday, August 27, 2014

Sarah's Choice by Rebecca St. James


Sarah's Choice is a book for today's society.  It is a story of a girl who finds herself having to decide between the career of her dreams and a baby she didn't know she wanted.  Sarah has people in her life on both sides of the abortion debate who aren't afraid to share their opinions.  Ultimately, she has to make the choice of whether to have the baby or abort it.

I have to admit that I didn't have very high hopes for this book when I chose it.  Rebecca St. James was a singer, not a writer!  I was pleasantly surprised at how well the book was written.  It kept my attention and I loved how she managed to be relevant to the young women of the day while keeping it appropriate and without crude language. I really actually liked it quite a lot!

Disclaimer:  I received this book from Book Looks Bloggers in exchange for an honest review.  All opinions are my own.

Tuesday, August 26, 2014

CHOP it up!

We are heading back to chop on Friday.  Dr. C wants to check the infection and we will do the post-op appointment then too.  He called in 2 more weeks of the antibiotic to make sure the infection is gone for good. 

The good news is that we can cancel our original post-op appointment, and we will get her next surgery date when we see him too!  

Just another trip to the city of brotherly love!! :)

4 Random Pictures From My iPhone to Give You a Glimpse Into Our Life!

1.  These two are so funny together!  They were having a "hoe-down" here. Yes, that's a colander on Sara's head...

2.  
The girls have quite enjoyed the dress-up doll quilt Grammy made for Abby!  Little felt dresses and hats stick to the dolls.  So cute!

3.  

The boy who wasn't tired after a long weekend fell right asleep on the couch!

4.  
A super-sweet former student of mine made Abby a cute little purse.  Abby promptly put all of the checkers pieces in it. :)

Thursday, August 21, 2014

Thankful Thursday

I've been really slow to write this because I wanted to make sure I could do it justice.  I didn't want to write a cursory post in the hospital when I knew I couldn't devote the time to it that I wanted.

When I woke up on the morning of August 3rd, I felt so alone and anxious.  We were leaving that afternoon to begin our VEPTR journey with our little girl, and we really had no idea what was going to happen.  I was beaten down and just plain sad.

Little did I know what had been in the works for months.  My amazing sister had planned a HUGE send-off for us that involved lots of lies and avoidances of truth along the way!  Matt staged that he had to go pick up his laptop from the church (he knew just a tiny bit--enough to get us to the church).  When we made the turn onto the road the church was on and I looked up into the parking lot...I saw cars.

TONS of cars.

And a huge line of people dressed in purple.

Some were in tutus.

Everybody had signs, balloons, and noise makers.

250+ people were there for us.

Did I mention it was a sea of purple?!?!






I was in absolute shock.  All of these people were here because they love and care about our family.  We had family members, people from our church, CCPS staff members, friends, people from the community we didn't even know...it was incredible.  What an outpouring of love.  I didn't even know what to say.

When we drove around and got out of the car, I hugged my sister and stood there in awe for a few minutes!





Bruce made a sweet little speech using the speaker on his police car.  Then Pastor Wagner had everyone join hands and pray, which was pretty amazing to see in itself.





We spent the next hour or so greeting everyone and thanking them for coming.  I tried so hard to get to everyone, but as I went through the pictures I realized that I missed some people!  So I'm sorry if I didn't get to thank you personally!!

Now it's time for the photo dump.  I know this isn't everyone, but I tried to include lots of pictures so that you could get an idea of how amazing this all was!!

(I didn't include names to protect the people pictured, just in case some weren't crazy about having that info on the internet!) :)

My sweet friend with her little heart warrior (he has on a custom made I <3 abby="" and="" her="" of="" p="" shirt="" some="" students="">

One of Caleb's best friends and his family (his best friend's mom is now his teacher!


Men in tutus...love it!!


Amy and Owen


My mom and sister managed to keep this a secret for a very long time!


Caleb's other best friend!


Love the support for my Caleb Boy.  He sure is the best big brother ever!!


Abby's awesome pediatrician came!  He is an incredible man and doctor.


Janet was instrumental in helping my sister make signs and get accessories for everyone to wear.  What a sweet woman!


Some of my family!


Our best friends were away, but they made a special sign just for us!

This sweet lady has been SUCH an encouragement to me over the last four years.  She gets it in a way that most can't, and I love her so much!  I love her wonderful daughter too!!


Awesome family!!


My cousin and her family (the baby is in the carrier sleeping!)


This hysterical family had me laughing so much!  Their mom was making a tutu for herself and then her boys wanted to wear them!  She said this is the closest to having a girl!


Several work friends came to show their support!


Another wonderful work friend and her family!


Wonderful, supportive family!


Great family--the mom worked with my mom and the family joined us for the Shuffle last year!


Sweet church family!


Caleb's wonderful kindergarten teacher and her daughter


Another family of Abby Cheerleaders from our church


Abby's awesome speech therapist and her family (I don't know what I will do when Abby has to transition to school-based therapy!  This woman has taught me so much, given me so many hugs, and endured so many questions!! She is a saint!!)  


Great church family (I had the sweet little girl in VBS this year!)


Oh, Owen!  


From the bottom of my heart...thank you to EVERYONE who came to our send-off.  It was such an overwhelming and emotional event.  We are SO grateful for your love and support!  And to that amazing big sister of mine...I love you.  You are incredible.  Thank you for all of the time and effort you put into this.  There's no thanks big enough to show how much this meant to us.

God reminded me in HUGE way on August 3rd that we are most certainly NOT alone in all of this!











Wednesday, August 20, 2014

Vacation of Desperation?

We took a little jaunt to Philadelphia yesterday, jokingly saying that we were pretty desperate to get a vacation.  I can assure you, this was no vacation!

Monday evening, we noticed that Abby's incisions were oozing a bit and the drainage was enough that it was seeping through her shirt.  Everything was pretty red and goopy, so I followed the nurse practitioner's advice and took pictures.  I called first thing in the morning on Tuesday and emailed them the pictures.  I got a very quick call back saying that we needed to bring her in...to CHOP...4 hours away.  I begged and pleaded with them to let us go to Hopkins (you know, that world renowned hospital a mere two hours away?!), but they insisted that we go to the CHOP ER with the expectation to be admitted for a few days.  Yay.

So, I called Matt (who had already left for work) and told him to turn around.  We hurriedly packed some stuff in the suitcase and called my mom to make some arrangements for Caleb.  I had just put him on the bus for his first day of school and now we wouldn't be there when he got home.  Sigh.  Between my mom and my sister, they expertly took care of everything with Chloe and Caleb.  <3 p="" them="">
At Hopkins, when we have been told to go through the ER for respiratory issues, the ER is expecting us and a pulmonologist is alerted upon our arrival.  We are seen pretty immediately by people who specialize in the reason we were there.

Not the case here, and I was kind of laughed at for thinking that would be how it worked.  Nope.  We saw three nurses, an ER resident, and the ER attending before we ever saw an orthopedics resident.  And nobody in the ER had ever heard of VEPTRs or had even met Dr. Campbell.

Now you know my thoughts on residents.  I'm not a fan.  But I did like this orthopedics resident more than most because he didn't make any decisions without talking to Dr. Campbell.  Dr. C couldn't see us because he was in the OR, but at least he was consulted.

After much deliberation, it was finally decided to start Abby on some antibiotics and change some of the steristrips.  Yep, that's it.  That was all they did after we trekked four hours and abandoned our son on his first day of school.  This could have easily been done at Hopkins (or at the pediatrician's office, for that matter!), so we were a bit frustrated.  Now we know.  I think we'll be going to our pediatrician before we even bother calling CHOP.  For whatever reason, they are anti-Hopkins and want every little thing done there...xrays, bloodwork, pre-op...everything!

All of this in the ER took quite a long time and we'd already made hotel arrangements because we were expecting to be admitted.  The cancelation deadline for the hotel had passed by the time we were discharged, so we figured we might at as well stay if we had to pay anyway.  And, it was rather late and Matt wasn't all about driving 8 hours in one day with a 4 hour ER visit in between.

We left this morning and got home around 2:30 after picking Chloe up.  Caleb was very happy to see us and everyone is happy to be home!  Abby's back is looking a little better with 4 doses of antibiotics in her and she was thrilled to take a bath in the tub instead of having the lie down on the counter.  (I used this clear plastic covering from the hospital to cover up the wound and didn't fill the tub at all, but she was a much happier little girl!)

The things we do to get a vacation around here!  :)

Friday, August 15, 2014

So Sorry for the Delay!!

We ARE home!  We got home late Tuesday night after a five hour battle with multiple supply companies because our supply company gave us an oxygen tank with a broken regulator.  We were seriously afraid we wouldn't be able to come home that night because of it, but CHOP came through for us!

Since we walked in the door, I have been in high gear.  I spent Wednesday trying to rediscover our living room floor, learn how to use our new oxygen equipment, and try to keep a very cranky little patient happy.  On Thursday, I jumped back into work with two feet while my mom stayed with the kids.  I came home before nap time so that she wouldn't have to worry about the oxygen stuff. Today was a repeat of yesterday, except that I got to eat some yummy crabs while Mom took care of the kids (that's hard to do with crab goo all over you!).  AND, Abby was able to break out of the house-jail for a few hours and go to the farmer's market.  She rode in the stroller most of the time and was really tired by the time she left, but she enjoyed petting the dogs and seeing some friends.  I think she liked wearing real clothes for the first time too. :)

At this point, Abby's pain is minimal and she hasn't been taking pain meds very often at all.  Her biggest issue is the eating right now.  She refuses to eat much of anything at all and throws up just about everything we do manage to get into her.  Today was better--she ate small amounts of yogurt and didn't throw anything up!  This is progress.  Let's just pray she continues to improve and eat more, because she really can't lose weight!

Thank you for all of your prayers!  I have LOADS to blog about and lots of thank yous to give as well, but I wanted to at least give a quick update.  :)


Monday, August 11, 2014

When will we go home?

There's been some discussion about when we will go home.  From an orthopedic and post-op standpoint, Abby is looking really good and we could go home today.  What is hanging us up is her oxygen dependency.  She is now pretty good off of oxygen while awake, but still needs it while sleeping.  We tried keeping her off while she napped, but needed to put her on after a little while.  They don't feel comfortable sending her home on oxygen if she didn't have an oxygen requirement in the past.  We agree.  While we are certainly capable of handling oxygen (this is nothing compared to a vent!), we really would like for her to be back to baseline.  

Regardless, we will be getting an oxygen concentrator delivered to the house so that we will have oxygen for her as needed.  We keep a few small cans in case of emergency, but that wouldn't last us through one night!  She will also go back to continuous monitoring using a pulse oximeter while sleeping and spot checks throughout the day.  Hopefully, this will all be temporary!

So....we will be here for at least one more day, or until she can sleep through the night without oxygen. Please pray that this happens!  I'm not rushing to get home because I really want her back to baseline and safe, but I know the longer she is on oxygen, the harder it is to get her off.

Silver shirt


The silver T shirt that Abby has been in for all of the pictures is actually given to us by the orthopedic department.  Silver has anti microbial and pain relieving properties and these shirts are used for all veptr and spinal fusion kids.  It's also a compression shirt, so it provides some cushion and comfort that way.  While it is difficult to get on and off because it's so tight, she is very comfortable in it!  Good thing, because she is required to wear it!  She could put something on top of it if she wanted, but she is very comfortable in it and doesn't want to have anything else.  

I'm not sure how long she will need to wear it, but I do know that she will have it for each veptr surgery and many kids still wear them at home.  We will have quite a collection over the years!  

(This is an old picture taking right after surgery!  She looks much better now!)

Sunday, August 10, 2014

Post-op day 5

Today was a really good day!  Abby had the best night's sleep so far, and enjoyed lots of time coloring, visiting the atrium on the main floor, and playing in the playroom.  We even took a little walk outside!  She was able to sprint off of the oxygen for several hours today, but wore herself out and needed it again this evening. Perhaps it was the jumping on the bed that did her in...wish I was joking!  The girl is a maniac!  

We have had our favorite nurse for the third day in a row, and that makes things so easy and pleasant too.  She is so sweet and genuinely interested in Abby.  She's definitely a peds nurse!  I appreciate that she recognizes how well we know Abby and takes her cue from us.  

Abby also ate much better today and even drank 8 oz of pediasure!!  This made me so happy!  Her iv blew tonight, but because of her great fluid intake today, they didn't have to put another one back in.  We are hoping that was the last iv she will need during this stay.  If anything, she is enjoying the freedom for a little while!  

Thank you for continuing to pray for us.  We feel so loved and supported by our friends and family!  Group hug!!  :)

Saturday, August 9, 2014

Post-op day 4

Abby's days are getting better, and she is enjoying the playroom.  We even were able to take her off of the floor for a little while for a change in scenery.  

Last night was really rough.  Neither of us got much sleep at all.  They transitioned her to all oral meds and the oxy just isn't working as well as the morphine.  The nurse finally gave her a rescue dose of iv morphine to get her through the pain.  They were able to up her Valium to hopefully fill in those gaps, so I am hoping tonight is better. It's not too much of a problem during the day, but nighttime is hard because the back muscles get stiff and start to spasm.  

Bright and early this morning, Joe Resident sauntered in and announced that we would be going home today!  Uhhhh....she's on oxygen, her pain isn't managed, and Dr. c said he would see us Monday!  Nope! Our nurse was so annoyed with him!

The big issue is that Abby has become pretty oxygen-dependent.  I can't even take it off for a minute without her desating, as I learned when I unhooked her to put her on the potty and she went from 96 to 78 in 30 seconds.  Our day nurse thought she needed a chest X-ray and I agreed.  After all, she wasn't oxygen-dependent when we came here and now she needs a liter to even stay above 90!  Even with a liter, she sometimes dips.  There was also a little incident that happened during surgery where the lung got knicked, and I wanted to make sure that wasn't the cause of the problem.  

The same Joe Resident from this morning said she just needs to take deeper breaths.  Try telling that to a 3 year old when every breath hurts!  I said I wanted one anyway, so we just got back.  I don't know if we will get results tonight.  

Please pray for her breathing, as well as that Abby starts eating and drinking well. It has been a very slow process.  So far, no one has mentioned a feeding tube.  Let's hope we get her going soon before they do!

Sorry these aren't more entertaining.  I'm on the iPad and typing is hard to do.  Plus, I'm downright exhausted!  A basic update is about all I can do. Bare with me!

Friday, August 8, 2014

Post-op day 3

Wow, what a difference a day makes!  Abby made a whole lot of progress today!  We got her out of bed and standing for a while.  She did well, and wanted to go do a craft in the child life playroom.  She walked there with assistance!  I was amazed at how well she did.  It tired her out quite a bit, but she seemed to enjoy the change in scenery.  The Bevards left this morning and Abby was very sad to se them go.  After a good nap, she was ready for more visitors!  Both sets of grandparents came to see her and she played a little in bed.  

Later, I enjoyed a 2 1/2 hour nap, shower, and hot meal at rmh...all in one day!!!  It was glorious.  Matt stayed with Abby and they went to the playroom again.  This time she was taking some steps unsupported and even bent down to pick something up and went on her tiptoes to reach.  From that respect, she is doing really well.  She's very unwilling to move her arms above shoulder height though, so we will have to work on range of motion. 

Abby is off of iv pain meds and just taking everything orally!  This is a big step. They did hook her up to fluids overnight because she's not drinking much yet.  She ate a few bites of yogurt, some apple juice, and a few sips of pediasure today.  The eating will be a very slow process.  We will get there.

Tonight, Abby pulled her oxygen cannula out in her sleep while I was in the bathroom (in her room).I heard a beep and came out to check on her.  Her oxygen levels had dropped significantly in less than 2 minutes.  So for right now, she's telling us that she needs some oxygen.  She had a hard time recovering from the drop and was working a little too hard, so the nurse bumped her oxygen up.  She is now doing really well and is resting very comfortably. We won't be going home until the oxygen is back to baseline, since she has never been on any.  

We appreciate your continued prayers for our girl!  Slow and steady. :). Today was a good day!

Thursday, August 7, 2014

Post-op day 2

Today wasn't a whole lot better than yesterday.  Abby is still in a lot of pain whenever she is moved at all.  She's no longer vomiting, so the Zofran is helping.  She's only had 1/2 a pretzel and 4 oz of Apple juice though.  :(. 

Basically, she is just lying in the bed with a pained look on her face.  I did get a few traces of a smile today, but she rarely talks and communicates mostly by shaking or nodding her head.  I've caught her crying silently a few times and it breaks my heart.  I wish I could take all of this away!!

Abby has developed a fever tonight.  They are pretty sure it's just her body being angry about the surgery, so they gave her Tylenol.  It hasn't worked yet, but hopefully she will cool down soon.  The fever is causing her to breathe very, very fast (80+ breaths per minute!). We have been doing lots of slow breathing practice and blowing bubbles to work on it, but her alarm is pretty much going off nonstop.  I feel badly for her roommate.  

Her veins are teeny, tiny and blow very fast.  She is truly a "hard stick" and is running out of usable veins.  Between the three blood draws attempts, three iv attempts in the OR, and today's three attempts, there aren't many spots left!  She blew both IVs today and wasn't able to receive pain meds for several hours.  I convinced them to give her an oral dose to get her through, which was a great decision considering that it took 3 tries to get the iv in.  The iv team actually gave up and called for an ultrasound iv, which can only be done by a few people.  This wasn't much better and the man dug around for SO long. Abby was hysterical.  Just as I said he had to stop, he got it.  Praise God!!  Please pray that this one lasts until she doesn't need iv antibiotics anymore!

We don't have a time frame for going home right now, but we do have some goals: 
1). Eat a decent amount of food and drink plenty of fluids
2). Get off iv pain meds and use only oral meds
3). Work with physical therapy to get up and moving
4). Wean completely off the oxygen

These goals need to be met in this order because one kind of affects the next.  They are going to keep her on some oxygen until close to discharge because the physical therapy will be very hard work for her.  

Tonight, our specific prayers are for Abby's fever to go away and for her to avoid any type of infection, for her to be able to breathe at a slower rate, for her to start eating a bit, and for her iv to stay usable!!!!! 

8:15 update

Abby is pretty sick from the anesthesia and hasn't been able to keep anything down yet.  This was surgery #8 and she has never vomited from anesthesia before, so this is a new and unwelcomed development.  She has been pretty miserable!  For now, she is on a clear liquid diet.  

She had lots of visitors yesterday. Caleb, the Bevards, Nina and Paw Paw, and Aunt Judy all came to see her.  Abby was pretty sleepy, but we did get a few half smiles from her.  

She went to the picu from the OR, but was sent to the floor because she was doing so well.  There definition of "doing well" is different than mine, but it was good to get on the floor where they don't have to do vitals every hour around the clock.  

Until about 2:00 am, Abby alternated between throwing up, desating, and being in pain.  We need her to take deep breaths to keep her oxygen levels up, but doing that hurts.  I sit her up to make it easier, but that makes her throw up.  She was just miserable and I couldn't help her.  It was so sad.  She also needed to pee and hadn't, and they were threatening a Foley catheter.  Although the nurse was reluctant to do the bedside commode instead of the bed pan because every little movement made her throw up, I took the opportunity to try right after she emptied her stomach.  I figured that would be the best time to see if she could go.  I was right!  She went right away, and then was able to sleep pretty well from 2-6.

I am trying to convince them to let me give her some crackers to see if I can get her to keep something down.  I know that when I'm sick, that is better to me than clear liquids.  I'm holding off on ordering her breakfast in hopes that I can get her something of substance!

The doctors haven't come to round yet.  Thankfully, Abby's pain seems to be managed right now and her incisions look good.  

A sweet doctor friend of ours from Abby's nicu days reminded me that this is all normal and we just need to give it a little time.  I was so thankful for her wisdom!!  Thank you for continuing to pray for Abby.  Although she didn't have the veptr implant yesterday, her ribs did take an awful lot of trauma and will take a while to heal.

Wednesday, August 6, 2014

12:30 Update

Abby is out of surgery and in the PICU.  She is resting comfortably, but is on oxygen because she's sleeping so heavily.  She will most likely be weaned off of it as soon as she wakes up.  There are wound drains and pain balls (shooting pain meds right to the site) on both sides.  She's opened her eyes a few times and even sat up, but more out of confusion than anything.  We got her to lay back down and she's back to sleeping hard again.

Unfortunately, Dr. C wasn't able to put the VEPTR in.  Abby's ribs are too flimsy and most are more of a ribbon consistency.  Because the right side was so flimsy, he went ahead and opened the left side too--same thing. He did bone grafts for both sides to hopefully strengthen the ribs.  We will try again in 3 months.

We knew this was a possibility, but didn't realize how big of a concern it was until this morning when he said he'd been studying her CT scans and just wasn't sure that they would hold the VEPTR.  When the nurse told us they were closing her up and it was much earlier than we had anticipated, we knew that he couldn't do it.  But, we are thankful for a doctor who makes tough calls and does what is best for the long term.  Her recovery should be a little shorter, but we really have no idea at this point when she will come home.

THANK YOU for the outpouring of love that was shown to our family today.  Abby will love all of the purple pictures that were posted!  You all are so wonderful and it definitely helped me a great deal to know so many were thinking of my girl while she was in surgery.

9:12 update: surgery underway

The nurse came to tell us the surgery began at 9:00.

8:26 update: intubation

Abby was successfully intubated.  No other updates.  It will still be a little while before surgery actually starts.

Florida 2014: Dreams Do Come True!


Today is Abby's surgery.  Instead of posting something emotional and worried, I wanted to share a few pictures of her getting a dream come true!

Abby wanted to meet Elsa and Anna SOOOOO badly.  We just couldn't justify standing in the rumored 4 or 5 hour lines for one of only two days at Disney World, so we prepared her that it was not going to happen.  She would see them in the parade and yell hi!  

Well, God bless the Disability Access Service Card.  It was worth it just for this one moment.  We were able to sign up to see them and just come back at the noted time.  Glorious!!!  We didn't tell the girls until we were in the hallway waiting to go in, just in case it didn't happen.  It just seemed too good to be true!  Their faces were priceless when we told them!

Walking into the room to meet Anna and Elsa, Abby just lit up.  It was so sweet, and I will admit getting a little teary-eyed watching her in awe of her favorite characters. 







What a wonderful, beautiful memory.  I will treasure it forever!


8:00 update: surgery has started

I took Abby back around 7:40.  We have a fantastic team and have every confidence in Dr. Campbell.  It will be a long day.  They are going to let us know when she is successfully intubated.  I will update whenever I heard something.  

Keep posting the purple pictures!  Abby loved looking at the ones we got this morning.  Bonus points if you wear a tutu!!  :)

Tuesday, August 5, 2014

Surgery time

We report at 6:00 tomorrow morning.  Surgery is at 7:30.  We just left Caleb with my parents and are headed back to the hotel to give Abby a bath and use some antiseptic wipes they gave us at the hospital. 

After surgery, Abby will be taken directly to the picu rather than recovery. We will be able to see her as soon as they get her in the room.  It won't be until late afternoon.

Thank you for all of the prayers and well wishes.  I will post as often as I can tomorrow!

Tomorrow

Tomorrow is the big day.  I'm writing this ahead of time because I plan to spend our day making memories and enjoying being a family!  Therefore, the emotions that I'm certain I will be feeling the night before surgery aren't quite there yet...thank goodness.

We so appreciate your prayers.  Abby is scheduled for first thing in the morning and we expect the surgery to go well into the afternoon.  I don't expect that we will be able to see her until late afternoon/early evening.  I will be posting updates on Facebook and on here as I can. I do have a blogger app now that makes things a little easier.  Mostly, I am pretty sure I'll be staring into space or pretending to read my book while my mind is racing.

We would be honored if you would join us in wearing purple tomorrow to show your support of Abby!  If you have a Joy Runners shirt that we sold as a fundraiser for RMH, that is perfect!  Otherwise, dress yourself in purple and choose joy!  I know that Abby would love to see selfies of everybody in their purple!  You can post them on Facebook or email them to me.  As she recovers, hopefully they'll put a smile on her face.  :)

Thank you for all of your love and support.  Abby is a fighter, and our God is greater!

Monday, August 4, 2014

Pre-op Day

Abby had pre-op today and had to be stuck 3 times before they got the blood they needed. We met with the anesthesia team and found out that our awesome anesthesiologist from when she had her MRI will be with her again!  We are thrilled, as he is the only person who has successfully intubated her!  


We still haven't gotten into rmh, and we had to move hotels because the hotel we stayed in last night was totally booked tonight.  Ugh!  We found another hotel that isn't so booked up and is close to Target and lots of restaurants, so we will hopefully be able to stay here until we get into rmh.  The kids enjoyed swimming in the indoor pool tonight.  We went next door to target to get Abby a bathing suit, since we didn't expect her to do any swimming.  We went to dinner tonight at Joe's Crab Shack, where I got crabs for probably the only time this season.  They were fabulous!


Tonight, please pray that we get into rmh tomorrow!!  I really don't want to have to move on the day of her surgery!!  


Also, please pray that the insurance issues we are having get resolved.  It's a long story, but we have Obamacare to thank for this one....


Tomorrow, we plan to spend some time as a family visiting the Please Touch Museum, a Philadelphia children's museum.  Then we will take Caleb to my parents where they are camping.  

Florida 2014: Meeting Cinderella

We had another special dinner Thursday night.  There's a great character dinner with the Cinderella characters at the beautiful Grand Floridian.  It's about as close as we will ever get to staying at a place like that!!!

Now, the first character dinner with Mickey didn't go so well.    Abby was less than thrilled with costumed characters coming up to shake her hand.  But princesses are another story!!  We already knew she was fine with meeting princesses, since she'd done great with Anna, Elsa, and Ariel.  And she was thrilled about meeting Cinderella!

The princess even dressed up like Cinderella!


We got pictures taken outside of the dining room.  All of the photographers are so nice about taking pictures with your camera in addition to doing the professional ones!



Abby was beside herself when she saw Cinderella head our way!!  She climbed out of her seat and went around, not even waiting until Cinderella came to her!




She also enjoyed meeting Prince Charming!  (Side note, the place is way to crowded to even dream about getting a picture without someone in the background...oh well!)


Madam Tremaine was fantastic!  She remained true to her character the entire time and was so believable!


Anastasia was my favorite!!  She was hysterical, and took a big liking to Owen!  



He was less than thrilled and spent the remainder of the dinner fussing making it clear that he was not amused.



With Owen out of the picture, Anastasia tried to give Caleb a smooch.  He responded by diving under the table!


And Bruce had to have a little fun with Anastasia too...he gave her the "okay" sign!


Drisella wasn't as entertaining, especially compared to Anastasia.


Princess Lucy didn't want to wear her costume, but she did keep the crown on for a while.


This was my favorite dinner.  Although Caleb wasn't really into it (after all, it's all about princesses!), Abby thoroughly enjoyed herself.  The food was really good.  AND, they had delicious strawberry soup there that is completely pureed and Abby loved it!!  I got the official recipe and made it the other day.  It's yummy, full of fat, and Abby-approved, so we're adding it to her meal rotation!

I think next time we will definitely do some kind of meal with princesses and maybe try to find something a bit more manly for Caleb too.  Star Wars, perhaps?  (Maybe Abby will be better about masks by then!)