Life as a Leach

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 ...

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!

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 ...

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 ...

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.   http://www.organicgardening.com/learn-and-grow/corn-smut   -------------------------------------------------------------------------------------------------------------------------   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.

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!!

Silly girls!!!

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...

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.  

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

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 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...

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!  ...

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 len...

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...