Life as a Leach

I have had this rolling around in my head for over a week now and couldn't even fathom writing about it until now.  That's how tough this is for me to write.  As it is, I have been working on this for over two hours. Back in May, we participated in a Canadian genetics study where researchers are trying to confirm that they have found the mutated gene that causes CCMS.  We were really excited about the prospect of being a part of a such a big (well, for about 10 people!) study.  All that was required was a saliva collection from Matt, Abby, and me.  It was painless and easy!  We got a little bit silly during the process, took pictures for posterity, mailed off the collections, and really didn't think too much about it after that. The Thursday before Abby finished feeding therapy, I had a message from our geneticist saying she had some news about the study.  We played a little phone tag and she finally caught up with me on Saturday mo...

"And thank you, Jesus, for Chloe, and for her foster mom who took such good care of her before we got her."   ~Caleb's prayer last night

After being home for nearly a week, this Thankful Thursday goes out to the many friends we have at RMH.  Here are just two of many!!   It makes being away from home SO much more bearable when you are among people who "get" you...people who understand what it's like to be in and out of the hospital...people who realize the necessity of being germ-cautious...people who celebrate every little accomplishment right along with you...people who see kids, not disabilities. So thank you to our RMH family--ALL of you.  You all hold a special place in my heart, and we have a bond that most just cannot understand.   In related news, this article just came out sharing that research shows that Ronald McDonald Houses help kids heal faster.  I firmly believe this.   If you have never volunteered at RMH, please consider doing it.  Join us the next time we go up for an activity hour.  Make dinner.  Sort soda tabs.  Fill the mailb...

A doggie girl, that is!   Meet Chloe! Chloe is a 4 year old Boxer who we adopted from Adopt a Boxer Rescue.  (There are lots of dogs who need love, if you are interested!)  She was an owner surrender, supposedly because of allergies, but they had 4 other dogs of various breeds....so, we're not really sure what that was about.  We do know she was tied to a tree all day and crated at night.  She doesn't know how to play with toys and seems to be craving love!  Her given name was Cleo, but the foster mom didn't think she looked like a Cleo and called her Chloe.  We agreed that Chloe was a good name for her! I got an email from the rescue coordinator on Friday saying she thought she had a great dog for us.  We traveled a few hours to Western Maryland to meet this little girl that was described as a "laid back Boxer."  If you know anything about Boxers, you know that "laid back" is not usually a term used to describe them! ...

Today is Abby's last day of Feeding School! The back says, "Abby Joy:  Master Chewer" Overall Feeding School thoughts? The Positives: She has most definitely increased her volume.  She is drinking 4 oz of Pediasure 1.5 at 3 out of 4 meals and generally doing well.  Because the 1.5 is calorically dense, it's not such a big deal if she doesn't drink every single drop.  We want her to, but her weight gain has been good regardless. Abby is also eating a lot more solid food.  It's still mostly purees for volume, but she is much more interested in table foods (she ate 2 whole green beans and 3 pieces of elbow macaroni the other day!!).  We've decided to stop pushing the stage 3 lumpy puree because she just doesn't like it.  Although this is typically the next stage in feeding development, we all know that Abby doesn't do things the "typical" way!  She is much more cooperative when we just give her table foods, so we're ...

Because of the way this summer has gone, I haven't had nearly as much one-on-one quality time with Caleb as I had hoped.  It's just not that exciting for him to be at the hospital all day, but I have needed to be.   We have been able to do a few fun things though.  We snuck away a few weeks ago to the Science Center for a few hours, and he had a great time! building moon cars...  ...trying to feed the baby bird like he's the momma bird...  ...simulating an earthquake.. ...creating a cool track... ...pretending to be a ship's captain... ...admiring turtles, because they are his teacher's favorite animal... ...pretending to be a Teenage Mutant Ninja Turtle... ...playing on the underwater simulator and chasing down a sea turtle for his teacher... I was also able to take him to Port Discovery again last week...but I purposely didn't bring a camera so that I could have even more quality time.  :...

Matt and I decided to pursue something that we have been thinking about for a while.  It's a big, big step, but I think it's needed. As you know, Abby has a rib-gap anomaly that has caused her ribs to be in pieces.  The concern is that the ribs won't expand properly to allow the lungs to grow.  Until now, we have been very occasionally followed by a thoracic specialist at JHH.  I felt comfortable with him, but he has now taken a position at a hospital in Florida.  Sadness.  Now, our other doctors can't tell us who we should see instead.  They've basically said to just wait and see if she starts to have respiratory issues and deal with the ribs if she does. That didn't sit too well with us, so we made the decision to go visit Dr. Campbell at Children's Hospital of Philadelphia (CHOP).  Dr. Campbell is the creator of the VEPTR rib , and he is one of the only people who has actually seen what CCMS ribs look like!  Here is a  video ...

We decided to celebrate Matt's birthday a little early with a day in DC.  Caleb has been itching to go to the Vietnam Memorial (although he was disappointed he couldn't find Paw Paw's name on there, no matter how many times we tried to explain that (thankfully!) his name isn't on the wall!), and we got tickets to a Nationals' game. Of course, the day we went was the hottest of our relatively cool summer.  It was close to 100 degrees, complete with the typical DC humidity.  We had planned to do the monument circuit for the day, but we didn't last long. We went to the Vietnam Memorial first. Caleb just kept on looking for Paw Paw's name... After a picnic lunch, we finally gave into the heat and made our way to The Museum of Natural History.  Of course, so did every other tourist that day.  It was ridiculously crowded...as in, admire the exhibits from across the room because you can't get any closer than that kind of crowd...

Caleb was singing away in the car, as usual.  He just loves to sing! Abby:  Caleb, can you please stop? Abby:  Caleb, can you please stop? Abby:  Caleb, STOP it! Caleb:  C'mon Abby, I was just praising God! Abby:  Not our  God!

We learned early on that the best way to help Abby with her development is to just adopt a therapy lifestyle.  We don't "check off" her therapy when it's done each day.  That could limit her therapy to just 10 or 15 minutes a day, and she needs much more than that to be successful. Instead, we incorporate therapy into our daily activities so that they are embedded into everyday life.  Most of the time, Abby doesn't even realize she's working! Here are a few examples of ways we incorporate therapy into our day to day activities: *  We have Abby push any doorbells and elevator buttons (she has to stand on her tiptoes, which strengthens and stretches her leg muscles and improves the arches of her feet) *  At the grocery store, we have her call out the names of the fruits and vegetables she sees.  We discuss the color, the shape, and the size.  We'll also compare the sizes of different types of produce.  It's amazing how much language you can ...

Happy Birthday to my awesome husband!  Welcome to your late 30s!  :) In all seriousness, I am blessed by this man.  He is a fabulous husband and father.  Thank you for loving us!!

Our 4th of July celebration started a day early with some special activities at RMH.  They made American Flag snacks (break with strawberry jelly and bananas for stripes, and blueberries for stars) and fireworks in a bottle (glitter, pipe cleaners, and beads in water and baby oil).  They also went on a hunt for stars hidden around the playroom and won some fun prizes. Caleb obviously took the hunting very seriously... On the morning of the 4th, we went to Port Discovery and were pleasantly surprised at how not-crowded it was! Abby and Caleb both loved the car, although I fear the gender roles are already forming in these 2 pictures... There was an awesome drumming room there, which both kids loved.  The man in charge owns all of the drums and was so proud of his collection!  It was, ahem, kinda loud, but they loved it!! Abby's favorite place was the grocery store, where she "shopped" for quite some time! She also reall...