Life as a Leach

On vacation, Caleb had an awesome opportunity to blow his very own glass ornament!  He was so excited, and the ornament turned out beautiful! First, the guy put a sand mixture in the oven. He rolled it a bit to cool it off. Caleb got to choose the color he wanted.  He wanted red, so the guy rolled the hot sand in the red glass pieces. Back in the oven! He shaped it a bit before it was time to blow it. Then Caleb was on!  He blew air into the ornament with a long tube that was attached to the pole.  He's been telling everyone that his air is in the ornament.  :) After a whole lot of shaping... ...this is what the still very  hot ornament looked like.  We left it to cool overnight. This is the beautiful, finished product...with a very excited little boy!

I've been thinking about doing infused water ever since I first saw this picture on Pinterest: Don't they look delicious?!?!  Plus, I know that I need to drink more water and less soda....my caffeine headaches tell me that! My sister finally made some, and all it took was somebody "real" saying it was good for me to try it myself.  I floated through the produce section, picking various fruits and a few veggies to try in my infused water. I got recipes from here and here  and then just sort of made my own combinations.  These were my first three flavors:  From left to right, citrus blend, raspberry-lime, and cucumber-lemon The raspberry-lime was my favorite of the three, but the citrus blend was also really good.  I didn't like the cucumber-lemon, only because I couldn't handle the cucumber seeds that kept sneaking into my cup.  I guess I could have strained it better, but it just annoyed me. Since then, I have also made peach, bl...

Fear grips me at the most untimely  of times. Like sitting at a funeral, when I find myself considering the idea that I could be planning one for my daughter instead of she planning one for me...the way it should  be. Like when Abby is kicking a soccer ball around with the other toddlers while the big kids have soccer practice, and I gasp as she gets knocked down.  Just how strong are those ribs now? Like waking at the sound of every single cough on the monitor, wondering if it is going to turn into something more. Like seeing her gag on some food, praying that she doesn't aspirate on it.  What is "going down the wrong pipe" for most kids is a constant threat of pneumonia for mine. Like being asked what Abby's prognosis is, and having to say that I really don't know.  Then having to explain that her syndrome is so rare that there really isn't a prognosis.  She is pretty much making her own path here. Like singing "You Are My Sunshine" ...

Look what Caleb got to do! In 50 degree weather, no less! In the words of Caleb, "It was awesome!!!!!!! "

At Abby's awesome preschool program through our church, they did some adorable footprint butterflies.  I absolutely loved it!  When I went to hang it in her room, I realized that the best place was next to her mirror...but being the symmetrical lady I am, I couldn't hang it on one side without something on the other side!!  I have had this picture pinned for quite some time with plans to make it "sometime."  This was just the motivation I needed! "You Are My Sunshine" is a pretty special song to me.  I sing it to Abby all of the time before bed or right after she wakes up and is all snuggly.  And one day I will get through the last line without tearing up.  Maybe. Abby was super cooperative during the handprinting, and she was super excited that "her hands" were on the picture.  The whole thing really only took 15 minutes or so.  In retrospect, I probably should have painted the canvas and let it dry before doing the sunshine...

This is the face of a girl who is going to bed without a tube feed!!!!    This was actually taken yesterday, and tonight is her second night in a row of not having an overnight feed.  Woo hoo!!! Abby has to take 20 ounces of Pediasure a day--either by mouth or by g-tube.  We work hard to get her to drink as much as possible by mouth throughout the day, and then we pour the rest into her feeding bag to get by g-tube.   Well, yesterday she drank all 20 ounces by mouth!  In fact, today she drank 24 ounces--even over her goal!   I've been feeling for a while that Abby's stomach was too small to hold large amounts of food/liquid at one time.  On Sunday, I started doing 2 additional small meals throughout the day to try to give her body time to digest it and hopefully get more milk in her.  It has worked!!!  What's more is that I brought out this cup again (she never could sip through the straw) and all of the sudden, she...

Meet the Reeds. They first heard about Abby the day she was born, while they were at an Emaus weekend with someone from our church who shared the prayer request.  They have been praying for her ever since!!  They live a few hours away.  We have talked through email and they have sent gifts and cards to Abby, but we have never actually met them in person.   Until now. The Reeds signed up to join our Red Shoe Shuffle team, taking a leap of faith and joining up with a bunch of people they'd never even met! Can I just say how sweet this couple is?!?!?! We all (my parents, the kids, the Reeds, and me) walked together the entire 3.1 miles, and I loved learning about them.  It was surreal to finally meet two of the people who have so faithfully prayed for our family for the last 2 1/2 years.  (I know that there are many more of you, and I would love to meet every one of you!!) They played with Caleb and Abby as if they'd known them for...

Abby went to the eye doctor today, and he was able to actually get her eye measurements through reading the eye chart!!!  He started out by having a list of all of the letters in front of her so that she could point to the one she saw on the wall (only one at a time was shown), but then she just started calling out the letters herself--even better!  The eye doctor said that it's pretty good if he can get 4 and 5 year olds to consistently identify letters, but it's pretty amazing for a 2 1/2 year old!! This made me smile big time...after all, not too many "vegetables" have their letters down by 2 1/2.  :) As far as her eyes go, she is 20-50 and 20-70.  We don't need to do bifocals yet, but we may have to patch the good eye if the discrepancy gets any bigger.  Not a big deal in the grand scheme of things! I love sharing these little stories of the everyday miracles.  God has been so gracious to us, and Abby is most definitely living up to her ...

Shuffle Day has quickly become one of my favorite days of the year!  Where else can you get free hugs, do The Cupid Shuffle with a few thousand of your closest friends, and sing along to "Home" by Philip Philips?!  Perhaps the same place where cheers erupt for the little girl who pushed herself the entire 3.1 miles in her wheelchair, then courageously walked across the finish line.   This is what The Red Shoe Shuffle is all about!  It's about celebrating the seemingly impossible and remembering those who lost their battle.  It's about loving kids who choose joy in the face of struggle.  It's about laughter, hugs, tears, and love.  It's about The House That Love Built! How did our kids love the Shuffle this year?  Um, they loved it!! We all had "We Are Family" hats to show that we are part of the RMH family.   RMH exceeded its fundraising goal, so the new shuttle was there for everyone to see! Abby loved m...

During our day in Charlottesville, we found an awesome Freedom of Speech Wall where people could write whatever they wanted using the colored chalk they had available.  Someone made this awesome mural, with their own little political statement.  :) Caleb and Abby LOVED the Speech Wall!!  We hung out there and colored for quite some time! They were quite serious about their drawings.  :) I wish we had something like this around here.  Or a Menchies.  That would be good too.

I am exercising...like, on a regular basis.  Like, getting up early, sweating, and willingly causing myself to ache all day.  Yeah, I know!  Crazy! Matt and I both have started going down to the basement in the morning before the kids wake up.  We do different things and share the bike, but we figure that at least we are doing something  on a regular basis to lose weight and get in shape.  (Side note:  Matt went on the "stomach bug" diet last weekend and lost 10 pounds!!  I'm not sure he would recommend that one though...) I bought this video over the weekend because I liked the idea that it's just a 20 minute workout.  Even though I knew it would be intense (That's Jillian Michaels' middle name!), I figured that I could do it for 20 minutes.  Huh!  It is rough!!!  I'm doing it though! There are 3 different workouts that all are good cardio workouts, but each have a different focus (upper body, lower body, and abs). ...

I have SO much to share about our 2nd annual Shuffle!  I just need a few spare moments to do that.  Until then, read a little about the shuffle and check out whose picture is on the RMH Baltimore website!

We got a great deal on Living Social for 50% off of a membership at the MD Science Center.  Since Baltimore is our second home, we figured it would be well worth it.  We love that place, and it has been.  But what is even better is that we have reciprocal membership to a huge list of museums nation-wide.  We just show our card and we get in free! During our trip planning, I checked the list and found a museum in Charlottesville that would be worth checking out. Charlottesville was about 1 1/2 hours away, so we spent the day there.  They have a lovely little pedestrian zone there! The Virginia Discovery Museum was a great place to both kids.  They had everything from a tree house, to a frontier home, to a garden where you could pick your own fruits and veggies, to a mini-Charlottesville.  It was SO cool! Abby loved banging on these tubes that play music.  She went back to them time and time again. She especially loved the padd...