Wednesday, April 15, 2015

8 Days

What's been going on around here?

sleepless nights
spending time with Caleb
cleaning up the house
giving teacher gifts
studying spelling words
phone calls
making appointments
hotel reservations
grinding teeth
practicing math fluency
picking out movies and toys to pack
paying bills
cleaning the car
finalizing plans for Caleb
refilling prescriptions
stopping the mail

Soooo much to do, so little time!  The packing is as done as it can be until the day we leave.  We got thrown for a loop yesterday when we were told that the Penn Relays were coming to town and ALL hotels were booking up like crazy.  That means NO RMH discounts!  After search for hours to try to get into one of our "regular" hotels close to the hospital, I went ahead and booked something farther out of the city that won't cost me my right foot because we won't know if we get into RMH until Sunday.  History says we probably won't.  This hotel has an indoor swimming pool, so that should make Abby happy!  She'll enjoy getting to swim a little before it's back to not getting the stitches wet for months on end.

Tonight, I am hoping to clean out the car and clean the bathrooms.  I'm going to wait to vacuum and mop until Saturday so that it stays clean, but at least the upstairs bathrooms can be cleaned.  I've been working on emptying out the fridge so that we don't leave a bunch of perishables in there.

We just found out today that we won't be able to meet with Dr. C for pre-op because he is performing surgeries.  I guess it really doesn't matter, as he really won't be able to tell us anything until he goes in anyway.  We will still have our anesthesia pre-op appointment though.  (This is what most people can do at their primary physician's office, but Abby has to have additional examinations because of her airway.)  There's a chance that we will meet with the Nurse Practitioner before the surgery, but I don't think it really matters.  We are just going to have to wait and see.

There's not a whole lotta sleeping going on right now...I keep getting woken up by things that just have to get buying Caleb a luggage tag on Amazon at 4 a.m.  Yeah.  I have sleeping pills for when the stress builds up like this, but they wipe me out so that I can't even function the next day.  Given that I'm working the rest of this week, being zonked won't work either!

I just keep praying the same prayer, asking God to please make her ribs strong--or show us what the next steps are.  Will you please pray that with us over the next 8 days?  And pray that God will give us peace.  The waiting is hard.

As always, we would absolutely love for everyone to send us pictures with the hashtag #purpleforabby on the 23rd!  Abby spends hours looking at them (over and over and over and over and over...) and especially likes when someone sends a picture of their pet dressed up in purple!  We will, of course, be wearing our Joy Runners shirts....but any purple will do just fine!  Tutus are even better!  :)

Thanks so much for continuing to love on our family!

Bella's Gift by Rick and Karen Santorum

On May 13, 2008, the Santorum family welcomed their seventh child into the world. Isabella Maria was born with a rare genetic condition called Trisomy 18, or Edward’s Syndrome. Only 10 percent of children with Trisomy 18 are born alive, and 90 percent of those children do not make it to their first birthday. Faced with these bleak statistics, doctors told the family to prepare for Bella’s death. Instead, they chose to celebrate her life.
Over the next five miraculous years, the Santorum family adjusted to life with a special needs girl—and watched her transform the lives of everyone around her. In many days of sickness and joy, she became an inspiration to her community and, ultimately, to the nation. Bella’s Gift details the peaks and valleys, the joys and sufferings, and the incredible value of life with a special needs child. In a world that often measures worth according to usefulness, Bella’s story is a reminder that our real value lies in our capacity to love.
Rarely does a book touch me the way this book did.  Their blatant honesty about their struggles of coming to terms with Bella's diagnosis, coupled with the hope they have in Jesus Christ, just simply made this book a joy to read.  The reoccurring theme throughout the book was that one's value is in his or her capacity to love.  This is so evident in Bella's life and all who know her!

Wordless Wednesday

Friday, April 10, 2015

Hearing Aids Have Changed My Girl's Life!!

I never really thought hearing aids were a big deal to begin with.  After dealing with a trach and a vent, what's a hearing aid?  Plus, no one even really notices them because her hair completely covers everything.  Except that Abby loves to show them off ("See my purple sparkly hearing aids?!?!"), no one would ever have to know she had them.   But even if I did have reservations in the beginning, I'M A BELIEVER!!!  I love those tiny molded pieces of plastic!!!!!

The differences we have seen in Abby have been so amazing.  We had no idea how much she was missing until we saw how much more engaged she is now.  She is part of every conversation, throwing her two cents in whenever she pleases!  Caleb jokingly commented that he didn't think she could get any sassier, but she has!

Conversations in the car were basically non-existent because she just couldn't keep up with what we were saying--especially when I couldn't look at her.  Now we happily talk about school or play little games as we drive.

I've never gotten much out of Abby regarding school. Sure, little things might slip out here and there regarding what they did, but she has never really told me a lot.  Yesterday, she filled me in on the tallest, longest, and shortest animals that she learned about that day in class without me even asking, and then she proceeded to quiz me about the information!  I have never heard her go into that much detail about school in almost the two years she has been there.

I am so thrilled for her and know this will only help her as she begins school.  I'm so glad we were able to get them now so that she will start pre-k next year as equipped as possible.  With so much improvement in just two weeks, we are excited to see how much she is able to learn now that she can actually hear!  Thank you Lord for technology!

Wednesday, April 8, 2015

Rib Meat

Guys, I'm gonna be real.  The anxiety about the upcoming surgery is creeping up again.  Last time, Abby's ribs were too flimsy to hold the veptr.  Dr. C. Called them a "ribbon consistency."  So he did bone grafts and we are trying again on the 23rd.  

Please pray for MEATY RIBS!!!  We want these ribs to be nice and strong so that they will hold the veptr device properly.  No one chooses the veptr unless there are no other options, so we have been praying fervently that the veptr will be implanted to give Abby a new lease on life!

We won't know if the bone grafts worked until the surgery begins, so that gives us 15 more days to pray for a miracle!

We would also love for you to pray that Abby doesn't catch any germs between now and the 23rd!  We don't want to have to postpone the surgery if we can avoid it.  

Thank you, prayer warriors! 

Monday, April 6, 2015


I've had several handprint projects pinned for some time and was SO excited to be able to do them today!!

Micah 6:8 is Matt's favorite verse and I've been wanting to do this for several years.  I'm glad I did it now, or the kids' hands and feet wouldn't fit on there much longer!  I love the finished product of this.  

This one didn't turn out as well as I would have liked, but I still think having all of our handprints is sweet.  

Sunday, April 5, 2015

Happy Easter!

Happy Easter from my bed!  Round 3 has been as much fun as rounds 1 and 2.  

Not really.

I slept until almost 1:00, but my fever is back and I'm not keeping food down again.  Blech.

On the bright side, I have cute kids and a handsome husband.  My sister sent me these pictures she room at my parents' house.  The blurriness is because she took a picture of the preview screen from her camera.