Monday, October 27, 2014

Pre-Op

Abby had lots of appointments today (more than we originally thought, it turns out!)  We were up at 5:30, got Caleb to my parents' house at 6:30, and were at JHH by 8:30.  Early morning!

First we saw the anesthesia pre-op center to get her approved for anesthesia.  Sometimes we can go to our pediatrician for pre-op, but JHH wanted to see her because this is a big one that could impact the airway.  It went fine...another opportunity for us to educate people about Abby's interesting anatomy!

The nurse practitioner sent us to get blood drawn, which is always fun.  Thankfully, the phlebotomist listened to me when I said that her hands might look great, but they never actually get blood from them!  She also got heat packs when I requested, which really helps to draw out the vein.  This is the first time ever that blood was drawn on the first try.  Yippee!!

Our next appointment was for Abby to get a CT scan.  The tech grabbed the board they use to keep kids still, saying there's no way she will be still for this.  I asked if we could try it without the board (she absolutely HATES being strapped down!) and he glared at me.  I let him know that this wasn't her first CT scan and that I know she can be still because she's done it before.  He reluctantly agreed (preparing his I told ya so speech, I'm sure) and we started the scan process.  I know my girl.  She was totally fine, earning herself a lollipop and some cookies!

After going to the cafeteria for lunch, we headed back to the Facial Surgery department for an appointment with her surgeon.  Turns out, we were actually meeting with the entire Jaw Clinic, which meant we saw a speech therapist, geneticist, dentist, orthodontist, and our surgeon...who is really the one person we needed or wanted to see in the first place!

We did get some great information from our surgeon.  Here's a diagram of what the metal bars inside her jaw will look like.

  fingers holding ear tube

Abby will have external screws coming out toward her ears for several weeks.  We will turn them twice a day to extend her jaw.  The goal is to extend between 10-15 mm.  When the extension is done, Dr. K will cut the screws off at the skin and the internal bars will stay in until late February.

The plan is for Abby to be in the hospital for 10-14 days, depending on how well she does. She will be intubated and sedated for at least 6 days before they attempt to take the tube out in the OR.  If she doesn't tolerate that well, the tube will be put back in and we will try again a few days later.  The concern is that the swelling will cause her airway to be even tinier than it already is.  We plan to play it safe and make sure that everything is very structured!  I love that our doctors here feel the same way and have everything so carefully orchestrated.  Our wonderful ENT will be in attendance at both the surgery and the extubation attempt in case Abby gets into any trouble.  (He will also be working on her ears during surgery, to hopefully correct all of the hearing issues we have had in the last few months!!)

So...we're all set for surgery next Wednesday.  It's another big one with its own set of risks and concerns, so we certainly appreciate your prayers.  I'm starting to pack now! :)

Friday, October 24, 2014

Pumpkin Carving

We carved pumpkins with Emily and the kids!  We had a good system going:  Matt dug out the pumpkins while we sifted through to pull out the seeds.  Later, I washed and roasted them...yum!

Then we started in on the actual carving and decorating.  Emily was a big help with this!  She is so good with the kids.


Caleb drew his and carved some of it.  Matt helped too.  Pretty fun!


Abby wanted Elsa.  (shocker!)  I printed off a template and did my best...it looked better the further away you were.  Close up, the general consensus was that she looked more like Ursula from The Little Mermaid.  :o/


Emily's mom sent some very cute decorations, so we used them for our third pumpkin.  The kids had a lot of fun decorating this one!


Cuteness!




Thursday, October 23, 2014

Farm Fun With Emily!

Emily just fits right in with our family.  She jumps right in and helps with the kids, chats easily, and just seems to be one of us!  I am so thankful that God sent her to us.  We ALL love her!

After church on Sunday, we visited a local farm.  Our family tends to make the farm circuit around this time of year because we really enjoy the fall festivals.

The first places we hit were the moon bounce and slide.  Abby was really excited...until we got over there and she saw all the rowdy kids!  She knows her limits, so she waited a while until it was a little calmer.




We have no idea who this little girl is on the right.  She grabbed Abby's hand and went on down with them...

We visited the animals, which is another favorite of my kids.  They love petting the animals and getting them to eat out of their hands!!




After waiting in line for the hayride, we rode it down the country rode until we had a view of some beautiful farmland!  The hayride took us to the pumpkin patch.  






After we paid for our pumpkins and put them in the car, we went through the corn maze.  This one was quite a bit bigger than the one we went to a few weeks ago, and I think Abby was getting tired toward the end!  Caleb liked leading the way though.  



Of course, I had to subject them to a few photo boards...



The kids enjoyed playing in the corn pit!  (Of course, what fun would it be without a few kids with absent parents who throw corn at the other kids?!)


We topped the day off with some delicious apple cider slushies.  Yum!


Seriously, doesn't she just look like one of our family?!  LOVE that girl!!








Wednesday, October 22, 2014

A Letter to My Daughter

My Sweet Abby Joy,

FOUR years old!  Wow!!  Where has the time gone?!  I still remember the day we brought you home from the hospital like it was yesterday.  We were so very thankful...and scared to death!!



You have changed from that tiny, frail little baby to a vivacious, energetic preschooler!  A lover of Frozen, princesses, Chloe, and your family (especially your momma!), your zest for life is so evident.


  Your laugh is contagious--your big belly laugh is my favorite!  I can usually get you to break out with it when I tickle your trach hole!

I love watching you when you are playing with Caleb.  Your love for each other is so pure and beautiful.  Your face lights up when you see him.



Abs, you're facing a lot right now.  You'll be having surgery #8 in two weeks, and then at least 2 more by the end of the summer.  I know these are hard on you, but through it all you stay so positive and upbeat.  You are such an inspiration, Ladybug.



As you grow, I truly hope that you recognize the importance of your scars and aren't ashamed of them.  You see, every scar tells a story--a story of God's faithfulness.  He has been with us every step of the way:  through every surgery, through every appointment, through every hard day, through every celebration.  Your scars will allow you to tell others about everything God has done in your life.  Make the most of those opportunities!


I love you, Abby. You are one incredible little girl and I am proud to be your Momma.

Love,
Mommy-o :)



Monday, October 20, 2014

Name That Fungus!


Update!!  Thanks to Linda, I now not only know that this fungus is called Corn Smut, but it is also considered a delicacy in Mexico!  Very interesting, but I don't think I'll be adding any to my quesadilla.
 
 
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We found this in the corn maze.

While I do kinda like this picture, I'm a little weirded out by it.  See the corn cob popping out at the top?!  Weird.

Saturday, October 18, 2014

My New Favorite Appliance



This pretty lady is all mine now, thanks to a great find on the online yard sale!  I have been wanting one for a while, but wasn't willing to shell out the money.  This is in perfect condition and was less than half price!  Yippy!!


Friday, October 17, 2014

Thursday, October 16, 2014

Review of Never Ever Give Up by Erik Rees


Jessie Rees was only 11 when she passed away from brain cancer, but many don't make the kind impact in 80 years that she made in 11.  After Jessie was diagnosed with DIPG, an inoperable type of brain cancer, she noticed that a lot of the kids in the hospital looked sad and she wanted to help.  From that compassion, Joy Jars were born!  Jessie started the NEGU Foundation, standing for Never Ever Give Up.  This foundation gave out Joy Jars to kids in the hospital, hoping to put a smile on their faces.  Jessie just wanted to make a difference; she continually thought of others, even as she lost her fight with cancer.

This book was so inspiring to me!  I was just amazed at not only Jessie's positive attitude, but that of her family!  Her whole extended family rallied around her during her fight, some even flying in from another state so that they could be with her.  Everyone focused on what they could do to help others and spread a little joy, because that's what Jessie wanted.  Even in her death, her family and friends celebrated her life and spread joy.


Family Dinner

This past weekend, the bea-u-ti-ful Emily came to visit!  We had a great time!

After Abby and I picked up Emily at the airport, we came back to our house and got things ready for a family dinner that evening.  My dad recently had a birthday, and we also wanted to get everyone together to see Emily again too.


The kids all love Emily!!  Lucy especially bonded with her.  She is everybody's buddy, but there is most definitely a special connection between Abby and Emily that can't be ignored.  <3 p="">

Wednesday, October 15, 2014

Tuesday, October 14, 2014

Guess Who Visited?!

We have many more pictures and memories to share.  Stay tuned!


Friday, October 10, 2014

Thursday, October 9, 2014

Patching



Patching has actually been easier than I thought!  Abby has only pulled it off once, and that was while she was in the car and not so distracted.  




Surprisingly, she pulled all of the stickers off on the first day and announced she didn't want them.  So, she's just sporting the flesh-colored patch right now.  But her lovely glasses covers are going to be here in just a few days, since they've already been shipped!

You know what she said to me when I put the first one on her?  "Thank you, Mommy.  This is going to help me see better."  Love that girl!!


The Verdict

The verdict is in.

We met with the feeding team today and they unanimously agreed that it's in Abby's best interest to have a g-tube put back in.  There are a lot of reasons, but the big one is the stress on Abby to eat and gain weight.  She is consistently about 300 calories short of what she needs to be taking in daily.  Her goal is 1,300 calories a day because she burns so many calories breathing, and she didn't quite hit 1,000 in this last documentation...despite our best efforts!  With a tube, we will be able to address her feeding concerns without stressing that she has to get a certain amount of calories every day.

So.

I made a few calls and was able to get it scheduled so that it could be done at the same time as the jaw surgery.  I was surprised at how uneventful that process was.  She will now have her ear tubes removed and replaced, her old gtube scar revised, a new gtube placed, and a jaw distraction done.

4 procedures, 4 doctors.

(The revision is done by a plastic surgeon, but the new placement is done by a general surgeon!  I don't understand it either.)

It's all scheduled.

Done.

Checked off the list.

So why do I feel like I failed Abby somehow?  Especially when I talked to her about how she would be getting a g-tube again and she said, "But I'm going to cry when I get it because I just don't want it!"

Did we work as hard as we could?

Is there another cup that might make it easier to drink?  (I have about 30 different types!)

Could a different medicine help her eat better?

Will this be a huge step back in her eating progress?

But we are committed to continuing to focus on the eating, and are surrounding ourselves with a team of doctors and nurses who have the same focus.  We are not giving up on Abby.

We will not give up on her.


Tuesday, October 7, 2014

The Carnivore

Ya'll know how much of a battle it has been to get Abby to eat, right?  (If not, where have you been?!)  Recently, we've realized she LOVES meat!  The girl will chow down on steak and chicken!  In fact, tonight she ate over 30 pieces of lemon-herb chicken...independently!!  (This is HUGE because she doesn't really do any independent eating.)  She just kept asking for more and happily popping pieces in her mouth!  It was amazing!

The other interesting thing she has been doing is asking us what kinds of foods we like to eat.  This may not seem like a big deal, but Abby has never shown any interest in ANY type of food.  She has been completely indifferent to tastes and never seemed to find enjoyment in anything she ate.  So the fact that she is now asking what foods we like and sharing what she likes is a big step.  (By the way...when I asked her what her favorite foods are, she answered chicken and steak!)

Pretty exciting!  I'm hoping we can keep this momentum going!

Monday, October 6, 2014

Rock the Patch...and the Vote!!

So Abs found out from the ophthalmologist today that she needs to start patching her eye for two hours a day every day.  Her left eye that turns in is getting worse, and she is basically unable to see much of anything out of that eye.  Her vision measured 20/100 in the left eye WITH her glasses on.

No big deal.  We've dealt with many worse things!

But it is definitely going to take a bit of convincing to get Abby to buy into the whole thing. The alternative is putting drops in her eye that make her vision blurry for the entire day, which I think sounds a lot worse.  I thought I'd be able to find cute patches that would entice her, but the girly disposable patches online aren't all

I ended up buying a few different brands of tan patches at the drug store to test them out.  I have a feeling that the adhesive will do a number on her skin like it usually does, so I started looking for some alternatives.  I found some cute ones that cover up the entire lens and the side.  I think that she will be much more willing to keep it on if it doesn't pull out her eyebrows!

This is where you come in!  Take a look at these and vote for your favorite!  (Keep Abby's personality and preferences in mind!)  :)

Choice #1:

Choice #2:

Choice 3:

Choice 4:

Choice 5:

Choice 6:

To vote, leave a comment on the blog or on Facebook!

Time to make lemonade with the lemons we got today!  She's going to look adorable with her eye patch!








Saturday, October 4, 2014

Enjoying Nature

Caleb, Abby, Caleb's friend, and I visited a local farm today for a little fall fun!  In addition to the typical corn maze and hayride, each weekend they have a different special family-friendly event to enjoy.  When we went, we made scarecrows.  And when I say we, I actually mean me
The kids jumped in the corn pit to their hearts’ content while I sneezed and itched as I stuffed clothes full of hay.




After making scarecrows, we bought our tickets and hopped on the hayride to tour around the beautiful farm country.  



For some reason, barns and fields are symbols of simplicity for me.  I felt like we had turned back time to the 1930s!  There was even a small pond with resident ducks to complete the picturesque setting.










After a 10 minute ride, the farmer stopped at the barn and let us off to visit some of the animals they have on the farm.  For 50 cents, the kids were able to feed the goats, cows, and pigs.  Of course, this pleased them to no end.  The goats succeeded in getting a big belly laugh out of Abby as they gently nibbled her hand for any extra crumbs they may have left!








Once the food ran out, the animals were no longer interested in us!  We climbed back onto the wagon to ride back to the main building of the farm.  Because a small pumpkin was included in the ticket price, we each picked out one to become the “head” of our scarecrows. 




 I let the kids draw faces on them once we got home to complete our creations.




Of course, we had to run through the corn maze a few times before we left!  The cool thing about this corn maze is that it is actually Sorghum, which is much shorter and easier to see through.  This makes it much nicer for younger children…and the parents who are worried they might get lost in the corn maze! 



Caleb and his friend were quite adventurous and probably would have stayed in for another hour, but Abs was about ready to lose it from exhaustion at that point.  It was time to head home! 


Fun afternoon!  Both age groups had fun, and I was successful in pulling them away from the electronics and getting them outdoors in the fresh air for a few hours.  Mom for the win!