Life as a Leach

Last week was vbs at our church!  It was a fun (but exhausting!) week of exploring other countries and learning about the missionaries that work there.  We traveled to Chad, Indonesia, Japan, the Ukraine, and then discussed how we could be missionaries in our hometown.  It was a pretty cool idea and a great way to connect the kids with the missionaries our church supports.   Caleb loved the music and learning about the culture of each country.   Abby's favorite part was dancing to the music we sang! I was a "mission mom" (group leader) along with my sister, and we had a good time...but like I said, it's exhausting! :)

Elsa came to visit our local Walmart as part of a fundraiser for Children's Hospital.  For $5, Abby could get her picture taken with Elsa!!!  That's a whole lot cheaper and easier than trying to so it in Disney World, so we went for it!   Abby was soooooo excited...until it was her turn.  So I got a picture with Elsa too! She is wearing an Elsa costume, but you really can't see it.  Either way, I know she will enjoy having the picture of her with Elsa for years to come! 

I don't even know what plan this is at this point...M? I called the jaw surgeon's office this morning, and he called me back within just a few hours!!  Wow!  I love that.  I shared with him that Abby will now have two surgeries three months apart with a jaw surgery in between.  He agreed that was a lot!   I asked if we could possibly push the jaw surgery back to spring or summer, and he thought that would be fine.  He said if she has trouble recovering from this first surgery, then we will need to do the jaw surgery before the second one.  But if she's fine, we should be able to wait until after she gets through all of this.  We will keep the jaw surgery date that we have already scheduled, just in case we do still need to do it in November. So...plan M.  How many more will we make?! In other news, I made Pulmonology and ENT appointments for October and December, respectively.  It's so hard to think past August 6th!!  ENT wa...

Wishing for a little good news?  Me too.  And I've got some! Abby has been really struggling with eating...and that means we have too.  There have been lots of behaviors and drama surrounding any meals.  We decided to regroup and roll with Dr. C.'s declaration that "We done good" with the weight gain.  While we are still making sure she drinks Pediasure 1.5 and gets at least one good high calorie meal a day, we have decided to give her more autonomy in what she eats. Enter IHOP, where kids eat free with each paying adult!  We ordered Abs silver dollar pancakes, eggs, and sausage!  Matt ate the sausage, but we were pretty impressed with how much she ate!  This was the first time we've ordered her her own meal, and something we can now cross off of her 2014 goals list!  :)

We had a long meeting with the orthopedic surgeon on Friday who will do the VEPTR. I am very, very glad that we met with him.  It was worth the fourth whirlwind trip in five weeks. Bottom line: we can't wait on the VEPTR.  It needs to be done now.  So, our decision is made! He thinks Abby will benefit most from attaching a permanent curved VEPTR after breaking and grafting the ribs to make them expand. (if it sounds painful, that's because it is!). This needs to be done on both sides, but is too risky to do all at once. She will have the right side done August 6th, then have an identica l surgery on the left side 3 months later. This is not the "typical" VEPTR, but he feels it will be our best bet for pulling out her ribs and getting them to grow properly. These are Abby's ribs now (images taken in February--the disc is a little whacky and I couldn't open the most recent CT.  They look the same though!).  There are 4 solid ribs at the bottom on her r...

After multiple phone calls to our orthopedic surgeon's office today to discuss the latest, Dr. C. wants to meet with us in person.  He said it is really hard to do all of this over the phone and wants to look at scans and reports with us. We're thankful for this because it really wasn't sitting well with us that we wouldn't talk to him about the specifics of the surgery until 2 days before it happened!! So...of the dates we were given, the only one that was really feasible is this Friday.  A bit last minute, but I'd rather do it sooner than later.  It gives him more time to talk to the team and plan.  We will go up Thursday and hopefully be back home in time for our local Relay for Life! Sadly, we will miss Caleb's last day of school for the second year in a row (last year we were at the feeding program).  It is what it is. In other news, our garage door broke today and stopped a few inches from the top when I opened it.  I pushed the button and got i...

Abby has a sweet little friend named Karsyn.  They are in the Young Athletes program together and have really hit it off.  She recently came over to play, and both girls had the best time!!    Her parents run a fabulous carnival every year to help raise awareness and funds for kids with Downs Syndrome.  The money they raise from the carnival is donated to various organizations that support children and adults with Downs Syndrome.  It is getting very well known in our area, and I can't wait to see it grow even more!  It's such a fun CELEBRATION of kids with Downs Syndrome!! Abby and I enjoyed watching the puppet show put on by high school students. Caleb and Matt played some games while we watched the show. A petting zoo comes with goats, bunnies, and a turtle. They have pony rides, and an adoption organization brought kittens!  I never touched it, so my allergies stayed at bay.  Abby was so thrilled though!! This year...

We're facing big decisions, folks. Ones that the doctors don't want to make for us because, as our ENT put it, "It's anyone's guess.  Don't believe any doctor who says he knows the right answer, because it's just not true." We met with the new jaw surgeon today at Hopkins.  He is extremely knowledgeable and has a lot of experience with jaw distractions , which is why they brought him on.  We were really impressed with him and the before and after pictures he showed us of his past patients. During the distraction, an L-shaped cut is made on both sides of the jaw and metal bars are put in.  The bars are attached to external screws that go behind the ear, which we will turn for 14 days.  The external screws will be removed after that, but the bars will stay in her jaw for several months.  Because of Abby's airway issues and the swelling around her face due to the surgery, she will be intubated and sedated for about 5 days before they attempt to ex...

I never want blogging to become a chore.  When I don't have time or don't feel like writing, I don't.  That's why I'm not a money-making blogger; I can't commit to blogging that much.  I like to write and it's therapeutic for me, but it is also put to the side when other things take precedence. That being said, I've been short on time the last few weeks during our travels to and from Philadelphia and I have lots of medical stuff to share! *  Abby had a dynamic MRI done on May 29th.  Our concern wasn't the MRI itself, but the intubation that needed to happen.  She was successfully intubated on the first try in just 15 minutes!!  We had anesthesiologists from the "Difficult Airway Team" (that in itself makes me happy!!) who were excellent.  They took detailed notes of what they did and what they saw the whole way down, and I couldn't have been more pleased.  Abby came out of anesthesia just fine too.  Once she woke up, she was in a ...