Friday, August 15, 2014

PCC 2014



Earlier in the month we spent 5 days and 4 nights at the incredible Gaylord Opryland Hotel in Nashville, TN with our extended EB family.

It’s hard to believe that just a few months ago Joe and I were discussing whether or not we should even attend the PCC.  I went when Ella was 3, but it was a crazy visit and for various reasons we didn’t get to actually participate in much of the conference.  The next PCC (Patient Care Conference) was in Orlando, FL when Ella was 5.  Due to several reasons we decided not to attend that year.  So given those 2 experiences, we weren’t sure how important it would be for us to attend.  We ultimately decided to go because Ella started asking about other kids with EB.  She wanted to know why she didn’t see any other kids that look like her.  We decided that the PCC was the perfect opportunity for her to meet other kids with EB and know she’s not alone.

I will never forget the look on Ella’s face when I told her that I had signed her up for the PCC kid room.  I told her that it was a special room for kids and that several of the kids in the room would have EB just like she does.  She got a HUGE smile on her face and said, “You mean I won’t have to tell them to be gentle because they will already know?  And they won’t stare at me because they will have EB too!” 

We arrived in Nashville on Wednesday July 30 and headed straight to the hotel.  I can honestly say that this is the most amazing hotel I have ever visited!  We have a Gaylord in DC and it’s really nice and pretty incredible, but it’s about 1/3 the size of the Nashville Gaylord.  This hotel even has a boat ride INSIDE THE HOTEL!  Seriously, it was amazing.

It was wonderful seeing old friends and people who I have only met online through my EB groups.  Seeing these people it’s like we have an instant bond.  There’s a language that only we speak.  There’s a life that only we understand.

I think the biggest transformation I saw was in Ella.  Oddly enough, even though we live in one of the most populated parts of the country, there aren’t any kids near us that have EB.  There is a boy in Arlington, but he has the most mild form of EB and his body doesn’t have to be wrapped at all (if you saw him you wouldn’t even know he has EB) and we’ve actually never met him.  There was another baby about an hour from us, but unfortunately she lost her battle with EB.  So, as far as we know, Ella is it.  The closes family we know of is about 2 hours away in Maryland.  We have been fortunate to get to know them and see them several times, which has been good for Ella, but she’s only a baby (not yet 1 year) and Ella really wanted to meet other kids her age.  I make an effort to meet up with families when we’re traveling, but for Ella it just isn’t the same.  She needed to know that there are other kids out there just like her.

On Thursday morning when I dropped Ella off at the kid room it was the first time in her life that she walked into a room, alone, without hesitation, and confident.  She didn’t ask me 100 times when I would be back for her.  She didn’t shed one single tear or even act like she wanted to cry.  She didn’t even hesitate.  I gave her a kiss on the head and told her I would be back soon.  She said “ok” and walked in.  After the first morning in the kid room I picked her up for lunch.  We were heading to the lunch room and I asked her how she liked the kid room.  Without hesitation she said, “It was awesome!”

Ella walked a little taller that week.  She knew that no one was staring at her boo boos.  I would offer to push her somewhere in the stroller and she would say, “No, I can walk.”  She knew that it didn’t matter if she walked slow because the other kids with EB were walking slow too.  There was no pressure to keep up.
Joe and I had prayed that during our time in Nashville, Ella would meet another little girl close to her age that she could befriend and stay in contact with.  Unfortunately that didn’t happen.  She played with other kids in the kid room, but didn’t really connect with anyone.  While we were disappointed, we decided that since it was her first time it was probably good that she just got to observe and see that she’s not alone.  Hopefully during the next conference (2016) she will go in and really be able to make some life-long friendships.

It was equally wonderful for Joe and I to get to hang out with other EB parents.  On Wednesday and Friday nights Joe went out with several of the dads to play poker and talk until the wee hours of the morning.  On Thursday and Saturday nights I went out with several of the moms and talked the night away.  Joe joked that we need to buy a big plot of land and create an EB compound.  That way we can all live together all the time!

All in all, it was a fabulous trip.  While we didn’t get to see anything outside of the Gaylord, I know Nashville is a beautiful city and we can’t wait to go back and do some of the touristy stuff.  The conference was full of great information on practical issues (blended diets, wound care, etc) and on up and coming research that is being done.  We continue to pray for a cure and are confident that there will be something available in Ella’s lifetime.  We love and miss all of the incredible people we met there and can’t wait to see everyone again in 2 years…hopefully sooner.

Wednesday, August 6, 2014

9 years!

10 years ago my friend and colleague set me up on a blind date.  That
night when I got into my car I said to myself, "I just met the man I am
going to marry."  Exactly 1 year and 3 days later, we walked down the
aisle to become husband and wife.

Life is definitely crazy and has thrown us some pretty huge curve balls, and we have both
grown personally and physically (cough, cough).  But there is no one
else I would rather spend my life with.


Tuesday, July 29, 2014

2 weeks of fun!



Things have been busy around the Murray house.  A couple of weeks ago Ella attended VBS (Vacation Bible School) at our church.  The theme this year was Agency D3, all about being a secret agent.

Ella had a terrific time!  Every afternoon on the way home we would listen to the music CD and she would show me all of the motions to the songs.  Some of them had to wait until we got home since they were whole body motions and not just the arms.

On Tuesday I asked her if she needed to work on her memory verse for the week.  She informed me that she already had the verse memorized.  Since it was only the second day I just knew that there was no way she had the verse memorized, so I asked her to say it for me (knowing that she wouldn’t know it). Well…much to my surprise Ella quoted the entire verse without a problem.  When I asked her how she remembered it she said, “We read it and I just remember it.”  What I wouldn’t give to have a memory like that!

Needless to say, Ella had a fantastic time at VBS.  She learned so much and would come home every day with questions about their bible story.  Friday night was Family Night, complete with a hot dog dinner and music performance.  All of the kids did fabulous singing their songs.

Last week Ella participated in our church’s Music Camp.  This was the first year she was old enough to participate, so none of us really knew what to expect.  All I knew was that the theme was Agape League (superheroes), which is completely up Ella’s ally, so she definitely had to participate.

She came home on Monday with the CD in hand so every morning and every afternoon she would practice her songs and motions.  Soon she had all of the songs and motions down pat!  On Friday morning when she was getting ready to go to her last day of Music Camp, Ella said, “Mom, I wish Music Camp was 2 weeks.”  She was having so much fun!

Friday night was the big performance.  Each kid had a purple t-shirt and a red cape and mask.  I have to admit that I really didn’t expect much.  I fully expected them to play the CD with singing and the kids from camp would just sing along with the CD.  I expected all of the kids to forget their lines.  I expected someone to stand on stage and cry the entire time.  I expected the motions to be all over the place and not synchronized together.

I am pleased to report that I was completely wrong!  First, the kids did NOT sing along with the voices on the CD.  They had memorized each of the songs and sang loud and strong all on their own.  There were several soloists who all did fantastic and stayed on pitch.  The kids had their motions down perfectly and performed them right on cue.  There were only a couple of lines missed and each time the kid picked up without a hitch and the show went on.  I couldn’t believe it!  They had pulled this whole thing off and did a great job!

Words can’t begin to express how thankful and blessed we are to be a part of such an incredible church.  They welcome our sweet girl into every activity, allow her have an assistant come with her (and even help us find someone to help her for the week) and are willing to make the necessary accommodations so she can fully participate and have a great experience.  God is so good!

Tuesday, July 22, 2014

What's in a name?



If you’ve been reading our blog long enough, then you’ve read this post about Ella’s name.  In a nutshell, we initially named her after both Joe and my grandmother, Ella.  It wasn’t until after she was born that we learned that the name Joella means “Jehovah is God.”  We both felt like this was incredibly fitting for our sweet girl.

In choosing AJ’s name we had a little different approach.  We decided early on that we would not use the name we had chosen for Ella if she had been a boy.  This was a new baby and a new start, and we wanted a new name.

Joe has always been a big fan of Abraham Lincoln, and at the beginning of the year he finished reading “A Team of Rivals,” a book about Lincoln and his presidency.  Reading this book gave Joe even more respect for Lincoln and the obstacles he overcame not just during his presidency, but during his life.

It was also during this time that Ella started a segment in school on Abraham Lincoln and would come home each day with another interesting fact about his life.  She bought a children’s book about Abe Lincoln and his hat and would read it often.

As soon as we found out we were expecting another baby, Joe made the request that if this baby was a boy, would it be ok if we named him Abraham.  I agreed that Abraham would be a great name.

A few days later I attended our small group bible study and that night Abraham and Sarah happened to come up in the discussion.  During the discussion we talked about Sarah’s age.  She was very old when she found out that she was expecting for the first time.  For years God had promised Abraham that He was going to expand their family.  But year after year passed and yet they were still without a child.  Just when they had completely lost hope and thought that God wasn’t going to uphold his promise, Sarah became pregnant.

For us, AJ is a sign of God’s promises.  We had a desire in our hearts to expand our family.  Time passed, I got older, and we wondered if maybe God didn’t want us to expand our family.  We explored numerous options to expanding our family and prayed diligently over each one.  What had been clear as the right answer for others, was not the right decision for our family.  Time passed and we started to lose hope.  Just as I was about to declare Ella as an only child, AJ entered our lives.

AJ is the perfect addition to our family.  He loves his sister so much!  I wish you could hear him belly laugh when she plays with him.  I wish you could see his smile when she walks into the room.  I wish you could see him reach out and grab for her when she passes by him.  He is her answer to prayer.  He’s everything she wanted in a little brother…at least until he starts crawling.

And just to wrap up this post, I have to share why we decided to call him AJ.  I love initial names.  I knew a lot of people growing up who went by their initials and I always thought it was cute.  We just knew that AJ would be an athlete, so we decided that he had to have a name that sounded good being announced over a grand stand.  While I love the name Abe, Abe Murray just didn’t have the necessary ring to it.  AJ Murray, however, sounds awesome when being announced in a loud, welcome him to the field sort of tone.

Tuesday, July 15, 2014

Lucky #7



We have 4 #7’s in our house right now.

Joe is always big #7 because that is his baseball jersey and his birthday is 7-17.

I am the big 37 (WOAH!).

Ella is 7 years old.

And AJ is 7 months old.

This definitely must be a lucky house!

Ella had her birthday party on June 14th.  I have a rule that when we’re having a birthday party and Ella wants to invite some girls from her class, she must invite ALL of the girls.  I don’t want anyone to feel left out.  The problem this creates is that with 10 girls from her class, combined with her 6 best friends from church, we invited 16 girls to her birthday party.  In case you aren’t aware, we live in a townhouse.  Now, imagine 17 7 year old girls in a townhouse.  CRAZY!  Thank heavens it all worked out and we ended up having 13 girls come, and much to my benefit, several parents stayed to help out.

The theme for this year was “cooking.”  Ella decided that she wanted all of the girls to make their own personal pizzas and make their own ice cream.

In preparation I decided it was in my best interest, and the best interest of my furniture, to push everything to the outside of the room and roll up the rug.  This way I didn’t have to worry about the pizza sauce, cheese, flour, fruit, chocolate and caramel that would inevitably end up on the floor.  With children, hard wood floors are a beautiful thing.

I took Ella to the store so she could pick out all of her own birthday decorations.




I bought pre-made pizza dough and gave each girl a ball that she could form into any shape she wanted.  We had several hearts, some circles, some triangles and one cat.  The toppings available were, pepperoni, black olives, green peppers and mushrooms…and of course plenty of cheese.

After the pizzas each girl made their own fruit kabob with strawberries, grapes and blueberries.  Thank heavens we didn’t have any injuries sustained from the wooden skewers.

While the pizzas were cooking (13 pizzas, one oven…I should have asked a neighbor for help cooking) the girls played in our backyard.  We were blessed to have absolutely perfect weather!  Not too hot, not too cool.  It could not have been more perfect!

For dessert Ella decided that she wanted to have an ice cream sundae bar!  But, since this was a cooking party afterall, we knew it would be much more fun to make our own ice cream.  My original plan was to pull out the ice cream maker and put it to work.  Then, in the back, cobweb laden area of my mind, I remembered when I was a teenager and my church youth group made ice cream in bags.  I couldn’t remember all of the details, so I did what any good, 21st Century mom would do…I consulted with Google.  With the additional help of youtube, I came across an easy recipe.

2 freezer bags (must be the freezer bags because they’re thicker and won’t get holes from the ice), 1 quart size and 1 gallon size.

In the quart sized bag put ½ cup half and half, 1 Tablespoon sugar and ¼ teaspoon vanilla.  Close tightly.

In the gallon bag fill with ice and add 1/3 cup ice cream salt.

Place the quart bag into the gallon bag and shake.

The girls (and parents) absolutely LOVED this activity!  They had so much fun going outside and finding new and creative ways to shake their ice cream.

I love this picture because you can see on the moms face (in orange on the left) how surprised she was that it was actually making ice cream.  Hysterical!


Within about 15-20 minutes the ice cream was solid and ready to eat.

Knowing that several girls would not be satisfied with plain vanilla ice cream (Ella included) I had purchased 4 flavors of ice cream to be included in the sundae bar.  The tables were loaded with any kind of topping a kid could want; marshmallows, hot fudge, caramel, chocolate chips, coconut, any kind of sprinkles possible, gummy bears, etc.

At the end of the party my house was a disaster, the swing set was broken, the kids were on a sugar high, and I was exhausted.  But…it was all worth it when several (yes, more than just 2 or 3…SEVERAL) of the girls declared, “This is the best birthday party I have ever been to!”  SUCCESS!!!