Team Joella

Trying to catch up

2012-01-25T21:56:00.001-05:00

Ifeel like in the weeks following Christmas we have been running from one thingto another. Unfortunately our house ispaying the price. Yes, the Christmasdecorations are down, but that’s only because we had a real tree and it wasstarting to look pretty bad, so it had to come down. The rest of our house looks like a tornadocame through. I keep thinking that if Ihave just a couple of days to get things back in order, then I’ll be fine. Of course I don’t have 2 days in a row. I only get 1 day at a time, so I clean what Ican, throw some laundry in, run the dishwasher, and hope that by the time mynext “free” day rolls around our house won’t be back to where it started.

Ioften tell Joe that I have no idea how I did everything when I was working fulltime. I worked long days (sometimes 10hours or longer), yet I feel like our house is messier now than it was when Iwas working. Sure, we paid to have a lotof things done that I now do myself…Joe’s dress shirts used to be taken to thedrycleaner, we used to have a maid (I miss her), we used to eat out a lot more,etc. Now I get to do all of this…and Iwouldn’t have it any other way.

Allthat to say, I’m sorry I’ve been neglecting you. I’ll come up with something spectacular towrite about soon (don’t hold me to that…we really have a pretty boring life).

Inthe meantime, here are some Ella-isms to tide you over:

The other night Joe was reading her Cinderella beforebed. She had several comments about thebook, but my favorite was when Joe read, “Cinderella worked hard all day.” Ella said, in her most sympathetic voice, “Justlike you work hard, daddy.”

Last night I was modeling my new bridesmaid dress for Ella and Joe. Ella said, “Mommy, you look beautiful in thatdress! I really like the bow! Man, I wish I had a fancy dress likethat." Of course she was disappointed that it's a "legs" dressand not a "no legs" dress.

After we got back from Disney World Ella would talk about it all thetime. One night before dinner she wassitting at the table staring at the picture of her and Cinderella and she keptsaying, “I wish we could come back.” Metoo, Ella…me too.

Every night we have the same conversation:

Ella: Mommy, I want to cuddle withyou tonight, not daddy.

Me: Ok.

Wait 5 minutes

Ella: Mom, I decided that I want to cuddle with daddy now. Not you.

It's so hard to say goodbye

2012-01-17T18:29:00.002-05:00

Ella did NOT want to leave. Here's a video of us leaving Hollywood Studios. She knew we were heading home the next day and she wasn't happy about it at all.

Once again I'm having trouble uploading the video, so please click here to watch it on youtube.

Sad to leave Mickey's House

I think it's funny that she thinks that if she's hungry then we'll stay at the park and eat. Obviously we ate a lot of delicious junk food while we were there.

Day 5 – Bonus Day

2012-01-11T08:48:00.002-05:00

Wewere supposed to leave Florida on Monday and take 2 days to drive home. We were having so much fun that we decided tostay an extra day. Monday we headed toHollywood Studios.

Wedecided to take this day a bit easier than we had the 3 previous days. Instead of waking up early and getting to thepark when it opened, we packed up the condo, said goodbye to the Burbs (mybrother and his family) and got to the park a little after 10.

Wehad heard a lot about Hollywood Studios and fluctuated back and forth betweengoing there, or visiting Epcot. I’m soglad we decided to visit Hollywood Studios. I was under the assumption that it was mainly for older kids and adults,but that was not the case at all. Yes,there were bigger rides, but they had plenty for kids too.

Firstwe hit up the Beauty and the Beast stage show. We sat in the second row right in the center, so Ella had perfectviewing. She was mesmerized by the wholething. Of course this is the whole showcondensed into 30 minutes, so she also kept telling us what they left out.

Nextwe headed to the backstage tour. Thiswas really cool. We got to see all sortsof things from movies past. Here are acouple of highlights.

Apparently this house was in the Hannah Montana movie. I never saw it so I'll just take their word for it.

Frozen Mr. Tumnus (right) from Chronicles of Narnia

Herbie the Lovebug!

20 points to whoever can tell me what movie this is from. (Wendy, you can't play since you already won on facebook :))

10 points to whoever can tell me what movie this is from. Why only 10? Because this one is a lot easier than the above picture.

Wewalked around the park for a long time just checking out all the movie thingsthey had on display. It was really coolto see them up close and now I’ll be checking every movie I watch to see ifthey’ve done any of their tricks.

Nextcame the Indiana Jones stunt show. Joehas decided that this was his favorite thing of the whole trip. It was really cool to see all the stunts andhave them explained to us.

Itwouldn’t be a trip to a Disney theme park without a parade. This parade was different than the others inthat it focused a lot more on the Pixar side of things.

Lastbut not least, we went on the Toy Story ride. This was basically set up like a carnival game with 3D glasses. You ride around in this little car and cometo various screens. With your gun youshoot at the screens to collect points. This is the point in the post where I definitely will NOT tell you thatyours truly (Katie, in case you’re not sure) had a grand total of 96,000points. I will also definitely NOT tellyou that my wonderful, antelope shooting husband had a mere 73,000 points. Granted, he had 54% accuracy in his shots andI only had 37% accuracy, but I had a faster trigger finger and that’s whatmattered in this game. To Joe’s credit,he has shot 1 deer and 2 antelope. I, onthe other hand, have never shot a big game animal (I’ve actually never tried).

Wehad a great time at Hollywood Studios and want to spend more time there thenext time we head to Orlando…and yes, there will be a next time.

Tuesdaymorning we headed out bright and early. We had intended to stop along the way and get a hotel for the night, butonce we got driving we just decided to push through. Ella was so exhausted after the wholevacation that she fell asleep at 9:30 am and slept until 1:30 in theafternoon. We finally arrived homearound midnight. It felt good to sleepin our own beds, but we sure missed the fun we had in Disney.

Ellastill talks about our trip every day. Just last night she was staring longingly at the picture of her withCinderella and she said, “I wish we could come back.” Me too Ella…me too.

Day 4 – Magic Kingdom Part 2

2012-01-08T23:01:00.001-05:00

This post could also be titled “A Day with the Princesses”because pretty much this entire day was devoted to Princess Ella meeting therest of the princesses. This will be mylongest post from our trip, so be prepared.

Every day when Ella woke up she asked the same question,“Can I wear my Cinderella dress today?” Every day I would have to explain to her that her Cinderella dressneeded to be saved for Sunday. Everymorning she cried and begged to wear her Cinderella dress, and every day I wasthe mean mom that told her no, and convinced her that another outfit would bemore appropriate. On Sunday she was sohappy when she asked if she could wear her Cinderella dress, and mommy finallysaid YES!

I planned this day on October 1^st. That was when I went online and booked allthe reservations we needed to make the Princess day go off perfectly.

We headed to the park at 8 am and let me tell you, it wasempty. Ok, not really empty, but therewere at least ¼ of the people that were there on the 31^st.

As we entered the park, Snow White was standing there. We got in line to meet her and Miguel, SnowWhite’s helper, stood behind us and told everyone else that we were the lastfamily to meet with Snow White. Wow, wemust have been pretty special.

Right after Snow White we headed over to meet Mary Poppins.

The mom in me couldn’t get over how white her dresswas. There wasn’t a speck of dirt onit! She even kept kneeling down on theground to meet all of the kids, yet her dress remained white. As we were leaving I couldn’t help but wonderhow I could get my hands on whatever stain remover they use.

At 10:30 our day for Princess Ella began with a trip to theBibbidi Bobbidi Boutique. We went back andforth for weeks on whether or not to let Ella do this. The boutique is a hair salon for littlegirls. Each Princess is assigned a FairyGodmother in Training who fixes their hair and puts on make-up. With Ella’s EB, she has never been to a realhair salon, I always cut her hair myself. So I was a bit hesitant about the Bibbidi Bobbidi Boutique. I asked several EB families and not one ofthem had ever been, so I didn’t have any EB advice to go on. I asked several other friends and they toldme that it can be a bit rough but that it was a wonderful experience. I watched video after video on you tube andwith each one I weighed the pros and cons. Ultimately it came down to a cost/benefit analysis. The cost: potential boo boos. The benefit: a priceless memory.

We decided to go for it. Boo boos last a week. A memorylasts a lifetime. When I made thereservation I told them that she has sensitive skin, so whoever did her hairwould just need to be gentle. Theyseemed fine with that. When we arrivedthey confirmed and asked again what special accommodations would need to bemade for her skin. I just told them tobe a bit more gentle, but other than that it should be fine. Ella’s Fairy Godmother in Training, Wanda,was perfect! She took special care toensure that Ella didn’t get hurt. Theonly time we got a bit nervous was when Ella chose a fancy jewel to go on hercheek, but again we weighed the cost and decided to go for it. If it left a boo boo we’d deal with thatlater (FYI, her face was fine. No booboo in sight).

We made the right decision! Ella had a smile on her face the entire time she was getting her hairdone. She chose a fancy blue tiara tomatch her blue Cinderella dress, and she chose a rainbow Mickey barrette to goon the back of her head. She chose acombination of pink, blue and purple eye shadow, and clear lip gloss. Throughout the whole process Ella truly feltlike a REAL princess. Her entiredemeanor changed! When we were finishedshe no longer sat back in her stroller, but sat up so the world could see her. When she walked she floated, like she wastrying to be as graceful as possible. Myonly word of warning to parents…after your visit to the Bibbidi BobbidiBoutique, you will have glitter EVERYWHERE! It was all over Ella’s stroller, and even all in Joe’s beard. He was looking very festive for the occasion.

Before:

After:

There are more pictures of the entire process in the Disney World 2011 picture folder to the right.

GiGi and the Murray clan had reservations for lunch atCinderella’s Royal Table. When we firstentered the castle we met Cinderella and had our picture taken. Ella was so sweet and loved meeting herfavorite princess. We headed to theupstairs of the castle and were seated right in the middle of the room. It was perfect for seeing each of theprincesses as they entered the room. Ella soon caught on that before announcing another princess, they wouldhave her story told over the intercom. As soon as she would hear the story begin she would tell us all to bequiet because another princess was coming! Here are the princesses she met at lunch.

Cinderella, of course. It was her house, afterall.

Snow White (#2)

Jasmine (I felt bad for Jasmine having to walk around in a bikini all day)

Ariel (after she got her legs...and got her voice back)

And Belle (in the blue and white dress). Belle was the only person in all of Disney to write a note in Ella's autograph book. Everyone else just signed their name.

Ella and Ariel even got to make a wish together with their “WishingStar.” Ella waved her magic wand andsaid the magic words, “Bibbidi, bobbidi, boo!”

Ella loved lunch so much! The food was terrific. All of usadults were impressed with how good it was, and Ella even ate all of herfish. Of course she loved her make yourown ice cream sundae, but she didn’t touch the ice cream. Instead she ate all of the toppings and letthe ice cream melt. Oh well.

As we were getting on the elevator to leaveElla said goodbye to Belle and Ariel. Both princesses turned around and without thinking twice they shouted, “GoodbyePrincess Ella!” They had remembered hername! With probably 40 or 50 otherlittle girls in the room, the princesses remembered Ella’s name! We were shocked. Ella looked at us with big eyes and said, “Theyknow my name!” That made her feel sospecial.

After lunch we rode several rides (Ella and GiGi spent a lotof time together so Joe and I could ride some grown-up rides) then decided tohead to the entrance of the park to visit the princesses in the “StorybookPrincess” room. Joe needed some daddytime (a coffee break) so GiGi and I took Ella to meet the princesses.

We first reunited with Cinderella (I likedthis Cinderella better than the one at the castle).

Next came Belle, this time she was wearingher yellow dress.

Finally cameAurora. This was the only place to meetAurora, so it was really important that we come visit her.

After we visited Aurora (Sleeping Beauty, for those of younot in the know about Princesses), one of the cast members (what they call theworkers at Disney) came up to us and asked if we could stick around for alittle bit. To make a long story short,they were finishing up visits for the day, so we were close to the end of theline. After Cinderella met with her lastprincess, she came back over to us and talked with Ella more. Then Belle finished up with the princess andjoined Ella and Cinderella. Finally Aurorawas done and Ella was alone in the room with all three princesses. What a dream come true for a 4 year old girl!

The cast member had specifically held us back in the room soElla could have a special treat of getting her picture taken with all 3princesses! GiGi and I were in shockthat Ella got such a special treat. Ellahad a permanent smile on her face.

It was such a special experience! Of course as we were leaving GiGi and I werecrying our eyes out. We just couldn’tbelieve that they would do something so special for Ella. She is such a lucky little girl!

Ella couldn’t stop talking about (and still talks about) howshe got to meet princesses “in real life.” They weren’t cartoons, they weren’t in a movie or on TV, they were inREAL LIFE! She got to talk to them andgive them hugs (which she did, every one of them got a hug) and they evendanced together! Yes, Ella danced withthe princesses. My favorite part waswhen they all twirled their dresses together.

It was hard to finish up a day like that. The line for Rapunzel was over 2 hours long, so we didn't get to meet her. And I have no idea where Tiana was. The best we saw of her was in the parade. Maybe next time we can add them to our book. We stayed and watched the Electrical Paradeand the fireworks, then headed home. That night we all dreamed about princesses.

I have to add that the thing that impressed Joe, GiGi and Ithe most was that NOT ONE princess had a reaction to Ella. Not one of them looked at her as thoughsomething was wrong. Not one made aawkward face. Not one flinched. Not one hesitated in touching her or givingher a hug. A couple even gave her a bigkiss on the cheek. They looked at herand responded to her as though she were the most typical 4 year old girl in theworld. I can count on 1 hand the numberof times in Ella’s lifetime where we’ve been in a public place and haven’t gotten somesort of reaction. And it wasn’t justthe princesses. All of the cast members throughout the 3 parks we visited were incrediblyhelpful and never asked any questions or looked at us as though something waswrong. To them we were just anotheraverage family coming to have a fun time at Magic Kingdom. That alone made the experience priceless.

Day 3 – First day at Magic Kingdom

2012-01-06T21:55:00.001-05:00

We decided to spend 2 days at Magic Kingdom, so the firstday was spent in Tomorrow Land and Fantasy Land.

Yes, we spent New Years Eve at Magic Kingdom. I know it’s their busiest day of the year andthat they often have to stop letting people in, which is why we arrived at 8:30to ensure we got inside. According toone of the cast members, this year wasn’t nearly as busy as last year. Apparently they closed the gate earlier thanlast year, so not as many people were inside.

Honestly, while it was very busy, it wasn’t as busy as Iexpected it to be. I expected to ride 1or 2 rides and hardly be able to move, but that wasn’t the case. We were able to ride almost everything wewanted to in Fantasy Land and Tomorrow Land.

All along our plan had been to leave in the afternoon andspend the evening at the condo. That waywe could get the kids into bed early and get back to Magic Kingdom early thenext morning. So we left the park around3:00 and hit up the pool and hot tub. The night was spent eating pizza, putting the kids to bed early, and theladies played “Phase 10” while the men all fell asleep in front of the TV. We were a pretty lame group and not one of usstayed up to ring in the new year.

Here are some pictures to capture the fun day!

Day 2 – Animal Kingdom

2012-01-05T14:55:00.001-05:00

Friday morning we woke up bright and early and headed toAnimal Kingdom. This was my first visitto Animal Kingdom, so I wasn’t sure what to expect.

We decided to kick things off by heading to the Safari. This was so awesome! We rode in these trucks and drove aroundvarious animal habitats in Africa, just like we were on a real safari. Ella was a scared that the animals were goingto get her, but we assured her that she was safe and mommy and daddy wouldprotect her.

Next we headed to the Lion King show. Wow! That’s all I can say about it, WOW.

Aunt Gina did a great job of planning a special lunch fortoday at Donald’s Safari Lunch. We gotto meet Donald, Mickey, Goofy and Daisy. I fully expected Ella to freak out, but she didn’t. She went up to each of them without a problemand gave everyone a hug and posed for a picture.

Of course we took a break to watch the parade, then headedto the 3D movie “It’s tough being a bug.” None of the kids liked it and I know at least 2 screamed through most ofit (Ella included). We ended up takingoff her 3D glasses and holding her face down in my chest while she yelled, “I’mdone! I want to leave!” Luckily it was only 10 minutes long.

The last show of the day was “Finding Nemo.”

It was a wonderful day! We only hit up about half of what Animal Kingdom had to offer, andunfortunately the grown-ups didn’t hit Expedition Everest, which we hear is thegreatest ride in all of Disney’s theme parks. I am confident this won’t be our last trip to Animal Kingdom so we’llhave to be sure and ride that on our next visit.

BEST…VACATION…EVER!

2012-01-04T14:20:00.001-05:00

I don’t know where to begin. We just got back from the best vacation we’ve ever had. It is going to take me at least 4 posts toget through all of this, so just bear with me.

Since I don’t know where to begin, I’ll do what Maria VonTrapp says and “start at the very beginning. A very good place to start.” (forall you non-musical lovers out there, that’s a reference to The Sound ofMusic.)

We headed down south on Tuesday, December 27^th. After a lot of discussion and weighing thepros and cons of each option, we decided to make the trip in our car. The Mighty Mini had its first really longroad trip, and I am pleased to report that she did a great job! We headed out at 5 am on the 27^thand made it to Atlanta, GA for the night. We have some good friends that live down there and have a daughter just1 year older than Ella, who also has EB. We had a great night catching up with them.

The next morning, after an awesome breakfast at IHOP, weheaded toward Sunny Florida.

About 6hours into our 8 hour drive, I called my brother (who was also driving) to seewhere they were on the trip. I told him,“The next exit we’re coming to is 375 on I-85.” Curby’s response was, “We just passed Exit 375.” Wow, we couldn’t have had more perfecttiming. We connected with them and drovein the rest of the way together.

GiGi and Paw Paw arrived that evening and we all spent thenight just hanging out and getting caught up. The next morning we decided to take it easy and just laid around thecondo all morning. That afternoon weheaded to Downtown Disney to get things started right.

Princess Aurora joined us for the first event of our trip.

The kids rode the carousel.

Ella had ice cream...before dinner. That's how we roll on vacation.

As we were walking to the restaurant for our dinnerreservations, we came across some street performers. Ella sat in her stroller just listening tothe music then looked at me and said, “I’m done (with her ice cream)…I want todance.”

And we had dinner at Raglan Road. It’s a great Irish restaurant that has anIrish band and Irish dancers perform throughout the night. (I can't get the video to upload but it's available in our Disney World 2011 link on the right).

We had a great night and this was the perfect way to startour trip!

Super Star Ella

2011-12-17T08:46:00.001-05:00

Ella had her Christmas program on Thursday. She looked precious and did a great job! She did all of the motions and during the last song I thought she might dance herself right off the stairs. You can even get a glimpse of her waving her dress back and forth.

Unfortunately the video is kind of long and I'm having a hard time getting it to upload to the blog, so if you go to this link it should take you to the video on youtube. Please commend if you're unable to see it and I'll figure out another way to show it to everyone.

http://www.youtube.com/watch?v=86-mgWjW6LE&feature=youtu.be

For the love of Elvis

2011-12-14T10:16:00.000-05:00

Ella had a special request this Christmas. She asked us to put a small tree in the basement. We have a pre-lit 4 ft. tree, so that was an easy request to fill. Her second request...that we put all of the Elvis ornaments on the little tree, "Because we love Elvis, don't we mommy!"

I shouldn't be surprised. Afterall, this is Ella's bathroom.

And yes, we have the matching trash can, soap dish, tooth brush holder, cup and cotton ball holder. We also have little guitar shaped shower curtain hangers that say Elvis on them. This is also where we have my Elvis bobble head, Elvis guitar candle, Elvis clock (although this is my second clock because the first one rusted out) and my Elvis car set. We also have the door hanger that says, you guessed it, "Elvis has left the building."

Side note: My poor mom and mother-in-law always get a bit freaked out when they walk into the bathroom because it looks like a man is climbing out of our bathtub. I can't blame them. It's a little freaky if you're not prepared.

I also shouldn't be surprised because this is what greets everyone who enters our basement.

Yep, it's a life-size cardboard cutout of Elvis.

And just to ensure you don't think I'm only interested in the image of Elvis, we do listen to a lot of Elvis music around our house. In fact, Ella was very excited when she heard Elvis sing Silent Night, a song she knows very well.

So here it is, the Elvis Christmas tree. No, not ALL of the ornaments are Elvis. I only have about 10 Elvis ornaments, so that's not enough to cover a whole tree.

There you have it, just a few samples from the Elvis Christmas tree. It really is a wonderful tree!

It's Christmas Time!

2011-12-04T11:34:00.001-05:00

It's official. Christmas has arrived at the Murray house. Here's proof:

The Christmas Cons are out of the closet

The Santa hat has been put on

The manger scene is up

The tree is up and decorated

And there's a fire in the fireplace

We love Christmas around here. Ella's only big disappointment is that we don't have any presents under the tree yet. I guess that means I need to start wrapping.

Happy Thanksgiving!

2011-11-24T18:01:00.001-05:00

I'm thankful for these two turkey's

Cheerios

2011-11-16T11:38:00.001-05:00

Ilove Cheerios. I’ve mentioned beforethat Cheerios are my comfort food. In fact, I usually have a box next to my bed so that I can have a little snack before I go to sleep. Nothing makes me feel better than a handful of dry Cheerios, or a nice bowl of Cheerios with fresh, cold milk. My mouth is watering just thinking about it. And I’madamant that the plain ones are the best. As a kid I remember my mom trying to trick me by buying the genericCheerios and putting them in the Cheerios box. I knew the difference and asked her what the deal was. We never had fake Cheerios in our houseagain. Even when I was at my most broke (if that makes sense) I would splurge on REAL Cheerios.

Ellahas inherited my love of plain Cheerios. She eats them almost every morning for breakfast, she often has a bowlas a snack, and sometimes she’ll even eat them for dinner. The girl loves her Cheerios. And, like her mom, she prefers the plain ones. I even bought the fruit kind onetime (like mini-Froot Loops) and she wouldn't touch them.

YesterdayI went to the grocery store where they had Cheerios on sale 2 boxes for$4. This is a great price, so I wentfully prepared to stock up. Unfortunately, other moms got there before me and by the time I arrivedthe store was completely sold out of Cheerios. Right next to the Cheerios were the generic brand, Toasty O’s, and theywere on sale for $1.97. I stared at thebox for a solid 5 minutes trying to decide if Ella would eat them. I even thought to myself, 'She had better eat all of these because I'm not touching those things.' I'm an awesome mom like that. In the end, I decided to take a shot and Ibought the box of generic Cheerios.

Thismorning I offered Ella her standard breakfast. She took one bite and knew that something was wrong. From that point on she wouldn’t touch hercereal. Finally I asked her to take abite and she looked at me and said, “Mommy, these Cheerios are yucky.”

Ibuy a lot of generic food that tastes exactly the same as the name brand, butwhen it comes to Cheerios, Ella is proof that there is no substitution for thereal thing. I just hope I haven't tainted her love of Cheerios.

If anyone would like an almost full box of Toasty O's, let me know.

Sound Sleeper

2011-11-11T08:01:00.001-05:00

Incase you forgot, Ella didn’t sleep through the night until she was 3 yearsold. I didn’t tell anyone when shestarted sleeping through the night because I didn’t want to jinx it. The funny thing was that once she startedsleeping through the night, it was like something triggered in her and she cannow sleep anywhere.

Letme first explain the difference between Joe and myself and our sleeping habits.

Joe:One of 8 kids. Always shared aroom. Slept on a bunk bed for much ofhis life. Can sleep anywhere on anythingwith any amount of noise in the background (all of the Murray’s have this gift,and yes, it’s a gift). Can drink anentire pot of coffee at 9pm and still be sound asleep by 10. Joe moves all over the place when he sleepsand the covers are a complete disaster by morning.

Me:One of 2 kids, and my only sibling is a brother so we never shared a room. Not only did I have my own room, I always hada double bed entirely to myself. I needcomplete and utter silence and complete darkness. It alwaystakes me at least 1 night (usually 2) to adjust to sleeping in a new place,which means I spend my first night barely sleeping. At night I lay down in one spot to go tosleep, and I wake up in the same position. In fact, when I sleep in a bed alone it hardly looks like someone hasslept in it.

Justfor a few more added details, let me say that I didn’t sleep through the nightuntil Joe and I had been married for over 4 months. I went from having my own double bed tosharing a bed and it was a tough adjustment. I also slept with earplugs in until Ella was born because I couldn’tsleep with Joe’s breathing/snoring/whatever noise he happened to make in themiddle of the night. I make our bedevery morning, not because I necessarily want to, but because the covers are somessed up that I end up re-making the bed before we go to sleep anyway, so Ifigure we might as well have a nice looking bed all day.

Nowto Ella. The child didn’t sleep untilshe was 3, so I was convinced she was going to have my sleeping issues. Well, it seems as though once she learned howenjoyable sleep is, something triggered in her head and now she can sleepanywhere. She has totally adopted Joe’ssleeping habits. Hotels don’t throw heroff. New beds don’t bother her. Noise doesn’t make her budge. She just sleeps. And she sleeps A LOT! Usually she’s in bed by 8:30 and I alwayshave to go in and wake her up in the morning so that she gets to school ontime. If I let her she’d probably sleepuntil at least 9:30 without a problem.

Nowthat she has decided sleep is a good thing, she falls asleep in the oddestplaces. So here are some pictures ofElla in her funny sleeping places, and these are just the times I’ve had acamera handy.

There you have it. This child can sleep anywhere. I love her!

Happy Halloween!

2011-11-02T15:27:00.003-04:00

Needlessto say, I’ve been a blog slacker lately. I hope I can make up for it with these fabulous pictures of the cutestStinkerella on the planet! Here are just a few things we've been up to in the past couple of weeks.

Here is Ella showing off her new pumpkin dress that GiGi made. She was especially excited about the orange hair.

We went to our church Fall Festival where Ella ate this entire cotton candy, an entire snow cone, 3 Twizzlers, several Sweet Tarts, and a hot dog bun (no dog). I was just glad she at least ate one thing that wasn't completely made of sugar.

Ella helped daddy carve the pumpkin. She did NOT want a scary pumpkin! She made sure he was making a happy pumpkin.

And of course Ella went Trick-or-Treating. She was so excited about the Cinderella wig. Her only concern when she wears her Cinderella dress is that she doesn't have "yellow hair" just like Cinderella. The wig solves that problem. Of course she only wore it for 30 minutes, then came home and asked me to take it off and put a bow in her hair instead.

Ella was also VERY excited that I let her wear make-up. She got to choose the color of eye shadow and lip gloss.

And here's a picture of Cinderella with Farmer Daddy. Ella wants all of us to dress up for Halloween. Daddy was a good sport. Mommy wasn't such a good sport. When she asked me what my costume was I told her I was just a mommy. She didn't like that answer, so I told her, "I'm a tired mommy." Whenever anyone would ask her what I dressed up as she told them, "A Tired Mommy."

Dragon Mom

2011-10-16T17:56:00.000-04:00

I’venever heard the term “Dragon Mom.” Untiltoday, I didn’t know that I was a “Dragon Mom.” A friend of mine posted this article on facebook: Notes from a Dragon Mom.

Whileour situation is not quite as dire as this one, there are many aspects of thisarticle that I relate to.

Weparent different than most people we know. Not better (in fact, in some cases, worse), just different. This is in part because of who we are…Joe and I fall in to the “chill”category of parenting. Certain thingsjust don’t get us worked up. Bedtime wasa loose issue in our house until Ella started preschool and had to be awake ata certain time. If we wanted to go to adinner that didn’t get over until 11 pm, we went with Ella in tow. We took her to her first Major Leaguebaseball game at 2 months old. I tookher on her first roller coaster last Christmas at 3 years old. These are things we would have done with anykid, EB or not, because that’s just who we are.

Butwe also parent differently because our child has a future unlike most others. We parent a child who, if statistics arecorrect, won’t live to see her 30^th birthday. We parent a child who, statisticallyspeaking, WILL get cancer…it’s almost inevitable. We parent a child who will most likely neverhave children. We parent a child who we’vewatched get progressively worse, and will continue to get worse until her body givesup. We are the unfortunate parents whowill most likely be faced with the daunting task of planning our childs funeral.

Allof that completely changes our parenting attitude. If Ella wants to eat chicken nuggets everymeal for a week, then I give them to her. And yes, I often fix her a dinner different from what Joe and I arehaving, in spite of the fact that pre-Ella we swore we would never do that. I’m not overly concerned about the amount ofTV she watches. We read a lot, color alot, and play a lot of games together. Last year I saved every single item she brought home from preschool, andI am doing the same again this year. Ihave saved every piece of clothing Ella has ever worn, including items that weonly used because she has EB. I NEVERleave the house without kissing her goodbye, and I go into her room and checkon her each and every time I get out of bed at night…even at 3 am. I wake up each morning knowing that thiscould be the day things take a turn for the worse, but at the same time I praythat we have just a little bit more time.

Our perspective on life is different. We allknow that we are not promised a tomorrow, but few people get the opportunity toactually LIVE like there’s no tomorrow. It’s a blessing and a curse. Iwish we didn’t have to live this way, but I know that there are countlessthings we would have missed out on if we didn’t.

Not much happening

2011-10-08T09:59:00.001-04:00

Onceagain, I apologize for not posting sooner. This time I can blame our computer monitor. It’s never a good sign when you go to turn onyour computer, then smell something funky, then see smoke coming from yourmonitor that keeps blinking on and off. Needless to say, our monitor went kaput. Thankfully our friends let us borrow an extra one they had, so we’reback on track and I can finally update this blog.

Thingsare going well. Ella is doing well inschool and still loves going each day. Each morning as she’s getting ready she tells me how Mrs. Bull is goingto love something she’s wearing. Tuesdayis was, “Mommy, I think Mrs. Bull is really going to love my Mickey shirt.” Thursday she said, “Mommy, I think Mrs. Bullis really going to love my braid [in my hair].” And Friday she said, “Mommy, I think Mrs. Bull is really going to likemy One Fish, Two Fish, Red Fish, Blue Fish shirt.”

Musicclass is also going well. I know about1/3 of the kids names, so I’m making progress. And I think I’ve found somesongs that the kids enjoy. Of course nowthat I’m finally getting used to all of this I have to start planning theChristmas program and choosing Christmas songs. Why can’t every class just sing “Away in a Manger?”

Grammy Janet came to visit last weekend and we all had a lot of fun with her. I won't mention anything about how she and I went to Moe's for lunch and completely stuffed our faces.

We did learn about one of Ella's new tricks. Each night when Ella goes to bed I pull her door closed so that Joe and I can be in our room or the computer room and not bother her. Then before we go to bed I open her door so that I can hear her if she needs us. For about a week I was getting really confused because I would go check on her in the middle of the night and her door would be closed. I'd open it, assuming I had just forgotten, and in the morning it would be closed again. I wrote all of this off as a) a random gust of wind from her fan or b) I was losing my mind. One night I opened her door and said to myself, "Katie, you just opened her door...remember that." The next morning her door was closed again. Finally I asked Ella if she was getting up and closing her door.

So here's where Stinkerella earned her name...my sweet girl claims she can't climb up on her bed during the day (we didn't have a step stool for her). She won't even climb down in the morning and waits until someone comes to get her (she claims it hurts). However, in the middle of the night when she would wake up and see that her door was open she would climb down her bed, close her door, then step on her stuffed animals to climb back in bed and go to sleep. Grammy and I went out and got her a little step stool so now she doesn't have to use her animals to climb back into bed.

She's such a sneaky girl! The good news is that I can be sneaky too and every night I purposefully leave her door open so that she'll get the exercise of getting in and out of bed to close it.

Notmuch else is happening around the Murray house, so this post is pretty boring. I just didn’t want you to think we hadforgotten about you.

Bacon

2011-09-23T16:37:00.000-04:00

I’velearned several things from my first 2 weeks as a preschool music teacher.

1) Be conscious of the clothesyou wear. Some things may be obvious toavoid, but others may not be so obvious. Since I spend a majority of my day sitting on the floor it’s best towear jeans (no skirts for me).

2) There is a MAJOR differencebetween 12 months and 18 months, or 2 and 2 ½. When you’re little 6 months makes a world of difference.

3) Even the best behaved kidscan get pretty out of control when you ask them to stomp around the room like adinosaur.

4) Passing the beanbag around acircle isn’t as easy as it sounds.

5) Over plan, over plan, overplan – there’s nothing worse than going through all of the songs in 15 minuteswhen you have the class for 25 minutes.

6) Always give a 1 year oldsomething to hold…it’s best if they can have 2, one for each hand.

7) Shakers are fun for allages!

8) BE FLEXIBLE! There may be a song that you’re reallyexcited about and convinced that the kids will love, then when you play it forthem they just sit there.

9) When doing “Head, Shoulders, Knees and Toes”be aware of how many times the song asks you to touch your head, shoulders,knees and toes. You may get more of aworkout than you’re prepared for.

10) Name tags are VERYimportant! Sometimes you may notunderstand a child whose name is “Beckham” and may spend much of the classcalling him “Bacon.”

Work it, girl!

2011-09-20T15:47:00.000-04:00

So Ella totally has this whole preschool thing down pat! It’s only been 6 days and she is already a pro. Last year every single morning on the drive to school I had to give Ella a pep-talk. It wasn’t that she didn’t like school, she loved it and every day when I picked her up she had a huge smile on her face. She even talked the whole way home about all that she had done that day. I think it was more that school was something new, she was only 3, and the kids in her class were very active…VERY. Last year she cried every single day when I dropped her off. Half the time I was pushing her into the class room. My “inside sources” told me that she was fine after 15 seconds, but that didn’t make drop off any easier.

This year I am the mother of a completely different child. Monday of last week she was a bit hesitant….first day of school jitters. Tuesday was better. By Thursday she was good to go. Friday she had a mini-meltdown because, as Ella put it, her class didn’t get to go to the “fancy” playground (AKA, the playground with a little house for her to play in). All in all, the week was great. Each morning she’d give me a hug and kiss, then turn and walk into the class with Mrs. Bull. No pep-talk. No tears.

Today something happened that I never thought I’d see. I was signing Ella into class and she just walked right into the room without saying goodbye. She didn’t even care that I was going to be leaving her for 4 whole hours! She trotted right into that room like she owned the place. I said to her, “Ella…you’d better get back here and give me a hug!” She came back and had a huge smile on her face, but once I got my hug she was off.

No one can believe how much she’s coming out of her shell. She’s actually talking to her teachers and responding when they ask her a question. She got to be the circle time leader last week, another day she was the line leader, and yesterday she was the caboose. Apparently today they were singing and dancing to a song and Ella took it upon herself to get in the middle of the circle and dance. I guess she needed space to truly express herself.

So, my baby is growing up. I love that she’s more confident and likes her class, but I don’t like that she’s so confident that she doesn’t need to give me a hug anymore.

I'm exhausted!

2011-09-16T17:34:00.001-04:00

I’m exhausted! Working in a preschool is hard!

Before I delve too deep into my first 2 days of work, let me make sure everyone knows one very important piece of information…for the past 8 years I’ve worked in politics. I substitute taught at a Montessori Preschool for 2 weeks back in 2002, and I was a tutor in a 9th grade urban high school English class from 2000-2002, and I’ve kept the nursery at our church several times. However, none of these situations required me to plan organized activities. There were other people in charge and they just told me what to do.

Also of note, Ella is very low-maintenance when it comes to activities. She’s content doing puzzles or playing games, and she really plays pretty well by herself. The child could lie on the floor and color for hours without getting up. She doesn’t take a lot of planning and organized play to deal with.

Ok, so now to my first two days as the Music and Movement teacher…WOW…I was remarkably under-prepared. At the end of last year I went and observed the previous teacher, but I’ve come to discover that I should have observed for several weeks to make sure I had everything figured out. I spent days going over her notes with a fine tooth comb, and I talked to another teacher and asked her what she suggested…I was still very under-prepared.

The previous teachers notes had various songs written down, then she would say “obstacle course” or “tunnels, balance beam and trampoline.” Well, I had no idea what that all meant, so I just faked it. Yeah, that was my first mistake.

In a nutshell:

First, I didn’t plan enough songs for my one year old class. My 20 minute class was over in about 5 minutes. Mental note: plan twice as many songs as I think I’m going to need.

Second, a little kid who wasn’t feeling so hot threw up all over my classroom floor. Mental note: make sure I am fully stocked in Lysol spray, paper towels, latex gloves and Clorox wipes.

Third, I made the VERY incorrect assumption that if given free reign over a room with an obstacle course that the kids would take turns and be controlled. This worked great with the 2 year olds, but not so much for the older classes. Mental note: Any time given for free play can quickly get out of hand. Keep things controlled and organized.

Thank heavens for some wonderful teachers who helped me pull the day together without the kids fully realizing the extent of the chaos. My last class on Thursday was much more controlled…it could have been that it was because it was the oldest kids in the school, but I’ll choose to say it was because I had 4 classes before them to get prepared. Thursday night Ella was in bed by 8 pm and I was in bed by 8:30 pm. Today was MUCH better, and I have high hopes for next week. I'm starting to feel like I sort of know what's going on.

The Family Business

2011-09-15T08:24:00.001-04:00

Well, today I enter the family business…teaching. I come from a family of teachers…both parents, brother, sister-in-law, 3 aunts, 1 uncle, 1 cousin, and I’m sure there are several more out there that I’ve forgotten to mention. I’ve avoided it for as long as I could, but this year the family business is finally catching up to me. I am the new Music and Movement teacher at Ella’s preschool!

For those of you who are surprised…yes, I do have a music degree. No, I haven’t used it in a long time, but I’m excited to put it to good use. I will only be working 2 days a week, so I will still have plenty of time around the house, and since it’s at the same time Ella is in preschool, I won’t have to miss out on time with her. In fact, she’s very excited that I’m going to be working at her school.

I’ve spent last week at the school getting things ready. The first day I was completely overwhelmed and stressed out, but by Friday I felt like I had things pretty much under control. I just keep telling myself that the kids are all 4 and under, so they’re not going to care whether or not my voice is in shape…they just want to sing, dance and play instruments.

I have to pick on my parents a little bit. They have been so funny about this whole thing. For those of you who don’t know, my parents are both incredible musicians. My dad sang opera back in the day, has sung at more than one Governor’s Inauguration, and has sung the tenor lead for several musical productions with the Casper Symphony and around the state of Wyoming. He was a vocal music teacher for I don’t know how many years (and even tried to teach his daughter a thing or two). My mom also has a beautiful voice and can play anything on the piano. Needless to say, my parents are very musically gifted. That said, I’ll go out on a limb and say that neither of them has taught preschool music. So, in discussing my new job, there have been 2 questions asked that nearly sent me into a fit of laughter.

1) This came from my mom: Are you going to have an accompanist? Yeah, it’s called the CD player. The kids are ages 1 to 4…I don’t think an accompanist is needed.

2) This came from my dad: Have you had a chance to meet with the choir? Umm, I’m not sure I would call it a “choir.” Yes, we have children’s choirs at our church, but this is just a music class in the preschool. There’s no arranged music for them to learn…unless you count the Itsy Bitsy Spider.

I am really excited to start working with the kids and put my music back into practice. It was funny because my original plan was to just find random songs that they could sing along to…I’d stick the CD in the player, we’d sing, I’d put in a new song, we’d sing, etc. It was going to be that simple. Then, as my planning week progressed, my music background started rearing its ugly head. Suddenly I felt like I would be doing these kids a disservice if I didn’t at least TRY to teach them something about music. That was when everything spiraled out of control. I grabbed a calendar and started planning…each month has a theme and each week has a specific activity associated with that theme…WHO AM I AND WHERE DID THIS COME FROM? For example, later in the year we’re going to have a month associated with rhythm and learning how to keep a beat to the music (you’d be surprised at how many people don’t have this skill). One week we’ll use egg shakers, one week we’ll use drums, etc. Another month we will talk about different types of music…one week we’ll listen to jazz, another week we’ll listen to classical, etc. (I even have a week where we’ll listen to country music…what kind of Wyoming girl would I be if I didn’t include country music somehow). Yeah, maybe this is a bit over ambitious, but I feel like I owe it to my past music theory teachers to at least give it a shot. It’s not like I’m going to make them learn how to read a key signature, or learn the lines on a treble clef. If the first month is a complete disaster, then we’ll skip the themes and go back to keeping it simple.

There you have it. My first class is around 10:30 this morning so we’ll see how it goes. I just hope I don’t have a complete panic attack in front of the kids. They would stay away from music forever if that were to happen.

New Pictures

2011-09-13T18:20:00.001-04:00

Pictures have been added to the August 2011 album and there's a new September 2011 album with Ella's first day of school pictures.

First day of school!

2011-09-12T17:52:00.001-04:00

Today Ella started Pre-K…K, as in Kindergarten…Pre-Kindergarten…the last year before she starts the “big kid school.” Where has the time gone?

In case you don’t remember what happened last year, I was a complete mess. I cried the second we dropped her off, all the way to the parking lot and all the way home. I’m a crier…it’s my spiritual gift, and when it comes to Ella there are many times I just can’t hold back the tears.

This year things are going much smoother. For starters, I know several of the kids and parents in Ella’s class. Last year we didn’t know anyone. This year I know at least 5 kids, and I know that Savannah, Ella’s friend from preschool last year, is in her class, so at least she has a friend with her. Ella also knows what to expect from preschool. She knows that it helps her learn things (she loves learning new things) and that she gets to go to chapel and science and even music class.

All that said, there were no tears shed…from anyone. We talked to Ella and told her that I would be close by, and she took Mrs. Bull’s hand and walked right into the classroom. She didn’t even look back to wave goodbye. She’s such a big girl! Of course, as soon as I dropped Joe off at the train station I went back to the church and peeked in Ella’s class to make sure she was ok (which she was). Then I stayed near the church until noon when Metti arrived, just in case they needed me for anything.

Preschool got out at 2:00 and I was there to greet Ella’s sweet face right at the door! I told her in the morning that if she was a good girl and listened to Mrs. Bull and didn’t cry, then after school we would go to Target and she could pick out any DVD she wanted. She kept her end of the deal, so I did too. She’s now downstairs watching her new “Princess Stories” DVD.

I can’t believe how big Ella is getting. She’s so grown up! She told me all about her day including who the line leader was, who the caboose was, and who was the circle time helper. It’s so hard to let her go, but Joe and I both know that this is the best thing for her. Yes, I took pictures and I'll post them later tonight. She looked adorable with her new outfit, new hot pink glitter shoes (yes, she picked them out all by herself) and her big hot pink bow!

No, we haven't fallen off the face of the earth.

2011-09-10T17:04:00.001-04:00

Wow, a lot has happened in the 2 weeks I haven’t blogged. I know I have some faithful readers out there who are probably annoyed with me…sorry about that. We’ve had a lot going on.

For starters, we had a hurricane. We were VERY fortunate that we didn’t have any damage from the hurricane. Some branches from our tree in the back yard fell down, but other than that we were fine.

This week we have had an abundance of rain! More rain than I think I’ve ever seen in my life! It was coming down in sheets, and I spent my day checking the drain near our basement door, and walking around the edge of the basement making sure we didn’t have any leaks. Suddenly, in the midst of the downpour, I heard something click on. It is at this point in the night that I wanted to personally find the previous owners of our townhouse and thank them profusely for installing a sump pump in the basement. In the 3 years we have lived in this townhouse, this was the first time the sump pump has ever clicked on. I examined the hole where the pump is and discovered that even though the pump had clicked on, it wasn’t actually pumping water out. It was only a matter of time before the hole filled and our basement began to flood.

I did what any wife would do…I called Joe. Joe did what any husband would do…he called his friend, Casey, who knows WAY more about this than we do. Since Casey is an awesome friend, he went to Home Depot and bought us a new pump, then drove to our house (in the pouring rain and trying to avoid flooded streets) and installed the new pump. Immediately the water was pumped out and we were safe and sound. Thank heavens for great friends!

Unfortunately several of our friends and neighbors spent all day Friday cleaning up from the floods. Many basements were ruined. I’ve said it before and I’ll say it again…I’ll take 2 feet of snow over rain any day!

We didn’t do anything too exciting for Labor Day. We decided to stay close to home and on Sunday afternoon headed to Casey’s house (and his wife and their 2 daughters) and had a camp out in their back yard. There was a lot of hype surrounding the camp out. All three girls were very excited to roast marshmallows and sleep outside in tents. Considering the Grubbs have a family of 4 and we have a family of 3, our tents were very large for what we actually needed. I think our tent is supposed to sleep 5 (maybe 6) and their tent is the Taj Mahal of tents and can probably sleep a whopping 10 people. Their tent even has a screen porch if you want to sit outside but don’t want to deal with the bugs. Seriously.

Anyway, we had a great time, but as it turned out Joe and Ella slept inside the air conditioned house, while I felt the need to prove my Wyoming roots and slept outside in the tent alone. It started to rain and I stood firm. I stayed outside all night and was completely fine. It was a fun adventure and Ella and Ginny are already planning on doing it again.

School starts on Monday, so we went to Ella’s Pre-K open house yesterday. She’s still attending the same preschool at our church, but this year she’s in the Pre-K program and is very excited. Joe and I are especially excited because Mrs. Bull is her teacher! We’ve known Mrs. Bull and her husband since before Ella was in the picture, and they’ve been some of our biggest supporters since Ella was born. We love them! In fact, we have lunch with them a lot after church on Sundays. We know several of the kids in Ella’s class, and the new kids seem very nice. I think all three of us are more confident this year. Ella is still Ella…she’s shy, but she was really excited to see the other kids on Friday, and since she already knows Mrs. Bull I’m hopeful that this year she’ll come out of her shell more. I have high hopes for this year and am looking forward to starting on Monday. Of course I’ll be a complete basket case when Monday morning rolls around, but I’ll cross that bridge when I get to it.

Earthquakes and Hurricanes and Preparedness, Oh My!

2011-08-26T16:46:00.000-04:00

Well, the Murray’s survived the earthquake. We had a few pictures fall off shelves and some things fell in the bathroom, but no permanent damage. And our house is still standing, so that’s good news.

Now we get to prepare for hurricane Irene. Let’s get one thing straight…I’m from Wyoming, a land-locked state. We don’t get hurricanes. In fact, I looked it up online and Wyoming has an annual rainfall of 13.31 inches a year. Virginia has an annual rainfall of 45.22 inches. Needless to say, I had never experienced a hurricane until I moved to DC. Hurricane Isabel came through just a couple of months after I moved here and I was completely freaked out. I stressed about it for days and went to the store and bought all the necessary supplies. I think I even bought 10 gallons of water, and I was living alone. I lived in a 3^rd floor apartment, so I knew I probably wouldn’t get flooding, but I had 2 huge picture windows and had images of the glass breaking and trashing my apartment. If I had known then that things like that only happen to people who live right on the water, then I wouldn’t have stressed out so much. Luckily my electricity only flickered off a couple of times and I was fine. Unfortunately something happened at the water facility and the most water I could get was a small trickle, but everything was back to normal within a day. And luckily, since I was so freaked out, I had filled my bathtub with water so I had plenty of water to flush the toilet.

I hope the same thing happens with Hurricane Irene. This time I have much more at stake. Now we’re homeowners with a basement and I’d really like it not to flood. We also live in a neighborhood that seems to lose electricity far too easily. Now we have Ella and the thought of doing her bath in cold water and her bandages without light really isn’t appealing (if we lost power I’d just skip the bath and only do bandages). And unfortunately our house is entirely electric, so all of the cooking will have to be done on the grill.

All that said, I think we’re prepared. We have plenty of batteries and plenty of food. Last night we collected all of our flashlights and camping lanterns. We have some water (although we could probably use more) and we cleaned out the drain near our basement door. Fortunately we live on a hill, so most of the water should head away from us and not cause too much, if any, damage.

I’ll take snow over rain any day! I know snow. I know how to drive in snow. I understand how it works and what is and isn’t possible with snow. I like that you can go out in the snow and not come in drenched. Rain is completely out of my comfort zone. Whenever I tell people about Wyoming winters they always gasp. Sure, we get several feet of snow each year, and yes, it has been known to snow in June, and yes, we get below zero temperatures on a regular basis. That said, I would take a good snowstorm over a hurricane any day!

Alas, we live in VA and we’re expecting Irene to make her entrance sometime soon. I’ll let you know how it goes.

Post Surgery Report

2011-08-24T16:10:00.003-04:00

One 5:00 am wake-up call + 2 hours in pre-op + 4 hours in the OR waiting room + 1 hour in recovery + 22 hours in a hospital room = 1 VERY LONG SHOWER!

We headed to Cincinnati last Wednesday. We wanted to get there a day early so that we all could get rested up before the surgery. We decided to drive this time, and Joe and I are so glad we did. The drive there only took about 9 hours and that included a stop at Cracker Barrel for dinner. It was much easier than we anticipated and the scenery was beautiful! West Virginia is one of the prettiest states I’ve ever driven through.

Thursday was relaxing day. We didn’t do much of anything other than eat and go see a movie.

Friday was the big day. We had to be at the hospital by 6:30 am, so we woke up at 5 just to make sure we had everything we needed. We let Ella sleep and just took her to the hospital in her pajamas. She kept asking where we were going, so we told her that we were going to see our friends. She was definitely confused that we let her stay in her pajamas. She knows that we don’t wear our jammies outside of the house. Ella has great intuition, and she knew from the start that something was going on.

When we arrived at the hospital they immediately got us checked in and took us back to the room to prepare for surgery. Immediately Ella said, “Wait a minute! These aren’t our friends…these are DOCTORS!” We then launched into a discussion about how doctors ARE our friends and how they just want to help us.

Each doctor took as much time as needed to meet with us and talk about what was going to happen. We were able to ask any questions and felt comfortable with the whole process. It was comforting to get there and they knew exactly how to prepare everything for a kid with EB. They had a special packet of Mepilex, Mepitel and Mepitac. I realize this means nothing to most of you, but for us that was major! The fact that they even had that stuff in the hospital was huge. In fact, I had packed all of those supplies in my purse to make sure they were using the right stuff. They even have special kits for intubation that are only used on EB patients. They have figured out the best way to intubate them with the least amount of damage.

The nurses let Joe carry Ella down to the operating room, he laid her down on the operating table and we kissed her sweet face. They put the mask on and soon she was sound asleep…snoring and everything. The walk back to the waiting room was the hardest walk of my life. We both cried the whole way. Within about 35 minutes the surgeon, Dr. A, came out to tell us how his portion of the surgery went.

He gave us this great photo to help show what had been done.

The photo on the right is Ella’s throat before the dilatation. You can see that it narrows in the middle. He said it was about 50% closed, which is better than the 70% he originally thought. The photo on the left is after the dilatation. Ahhh, nice and open. Hopefully this will be one step in helping Ella eat more.

As glad as we were to have that portion of the surgery done, the dilatation was the easy part. Next came the dental work. That took the next 3 hours. The surgical staff was great and would call every hour and give us an update on how things looked and where they were in the process. When the surgery was complete the dentist came out and gave us a complete rundown on the state of her mouth. In the end she needed 2 caps and several cavities filled. When we got back to the recovery room her poor mouth was so swollen she looked like a little chipmunk. She kept trying to tell me that she had something in her cheek and would open her mouth so I could see. It was so sweet. They gave her Tylenol for the pain and as soon as that kicked in she was back asleep. She slept through being transported to her room and slept through being moved from one bed to another. She even slept through Joe and I chowing down on Chipotle (which was good since she still couldn’t eat for 6 hours after surgery).

She woke up at 4:30 and the first words out of her mouth were “I’m hungry!” We had to distract her for the next hour and 15 minutes (thank you Tangled) until her food ban was lifted. At exactly 5:45 pm Ella started eating. She polished off a scrambled egg, 2 hard boiled eggs, chocolate pudding, a Nutragrain bar, a chocolate doughnut, 4 pieces of bread with butter and 2 juice boxes. Yeah, she was pretty hungry. Once the food was in her and she started feeling more perky, she was ready to get out of that bed! Joe and I were completely exhausted, but Ella had slept all day so she was ready to get moving. She and Joe walked all around our floor looking at all the pictures on the wall and talking to the nurses.

That night all 3 of us stayed in Ella’s room. Neither Joe nor I were going to leave that hospital room. Joe laid with Ella in her bed for awhile, but she only liked that for a little bit, then said, “Daddy, you’re making me hot. Please go away.” That meant that Joe and I shared the pull out bed…yes, it was a twin size… no, I didn’t get any sleep. Ella woke up at 4 am, so I went and slept with her for a little bit, then she kicked me out too. At 5:30 Joe woke up ready to face the day, so he headed downstairs to the cafeteria to read the paper, and I got in a solid 2 hours of sleep. Ella ate another large breakfast of 2 bowls of cereal and a scrambled egg, then we were discharged. The hotel had never looked so good! I took the longest shower of my life and loved every minute of it!

Ella’s recovery has been great! Her mouth was sore for the next few days, but as long as we gave her Tylenol she was able to eat fine. Ella had very minimal damage. There was one little spot next to her right eye, and of course her lips were pretty banged up, but that’s it. While she was in the hospital she got an iron infusion (to help with her chronic anemia…common in EB) and both Joe and I think that has helped her a lot. She is quite the little trooper and has bounced back better than I expected.

The last trip of the summer

2011-08-16T08:21:00.001-04:00

The Murray’s have done a lot of traveling this summer. Cincinnati in June, Los Angeles in July, Casper in July/August, and now we’re headed back to Cincinnati.

This week we’re heading back to Cincinnati for Ella to have surgery. She’s going to be getting 2 cavities filled (and all that goes along with a standard trip to the dentist…x-rays, teeth cleaned, etc.) as well as have her first esophageal dilatation.

Unfortunately EB affects the mouth, which means her teeth are compromised. No one likes to have cavities filled, but we know it needs to be taken care of. The truth is that while I’m scared of Ella going into the OR and being put under, there’s a part of me that’s really relieved that she’s going completely under for her dental work. I don’t even want to think about how terrible it would be to hold her down while she gets 2 cavities filled.

EB affects the throat as well, so sometimes eating can cause blisters and sores inside her esophagus. Once these heal it causes a scar, similar to those on her skin, which sort of shrink her esophagus. They call this a ‘stricture.’ So at one point in her throat she has a stricture of 70%, meaning that her throat in that one area is 70% closed. Really, this isn’t nearly as bad as it could be and she’s still able to eat with few problems, but considering that she hasn’t gained any weight, we want to get the stricture taken care of and see if we can get her back on the growth chart. The hope is that once the stricture is out of the way and she’s able to swallow without any discomfort, then she’ll start eating more and plump up. This procedure (a dilatation) is very common among kids with Ella’s type of EB, and the truth is that it’s kind of surprising that she’s made it to 4 years old and this is her first one. That said, it’s still major surgery.

We have decided to drive to Cincinnati since we don’t know how she’ll respond to the surgery and we don’t know how she’ll feel afterward, so please pray for safe travel and that Ella doesn’t get too stir crazy in the car.

Also, please pray for the doctors. We go to Cincinnati for Ella’s treatment because they have doctors who know how to handle kids with EB. The surgeon doing her dilatation has treated thousands of kids with EB and has perfected a procedure which causes the least amount of damage with the quickest recovery. We are thankful to be working with an anesthesiologist who understands EB and also knows how to handle our special kids. The dentist also knows all about EB and has worked with EB kids before, but unfortunately any dental work is going to cause damage in the mouth. Please pray that these doctors have steady, gentle hands and that Ella leaves the OR with as little damage as possible.

Please pray, of course, for sweet Ella. At this point we haven’t told her anything that’s going on. All she knows is that we’re going to Cincinnati for a trip. I guess we don’t want to get her freaked out too early in the game. She will have to stay in the hospital overnight, so please pray that she’s not too overwhelmed by the nurses coming in and out of her room. Of course Joe and I will be there with her the entire time, but sometimes that doesn’t help. And please pray for Joe and me to be comforted and make the right decisions for Ella. It doesn’t matter that thousands of other kids have had these procedures done, we’re still nervous. She’s our precious girl and we want her to be as safe and protected as possible.

All this said, we could really use your prayers this week. Thanks a million!

Fun in Wyoming!

2011-08-12T20:59:00.001-04:00

Sorry for the long delay in posting. Ella and I just returned from an 11 day trip to wonderful Wyoming. We had a great time hanging out with GiGi and Paw Paw, Uncle Curby, Aunt Gina, Sam and Nate. The only thing missing was daddy, and Ella was not happy about it. Several times she asked if we were going to pick up daddy, or if he would be there when she woke up in the morning. And if I would say that we were going home, meaning GiGi and Paw Paw’s house, she would say, “We’re going home to see daddy?” She missed him a lot!

We left way too early on Friday June 29^th. We flew out of Baltimore, so we had to be up around 4 am and leave the house around 5 to get there in time. Ella was not happy about waking up when it was still dark. All she knows of dark is that she has to go to bed, so she didn’t want to go back to bed right after she woke up. Luckily the sun came up soon and we were on a plane headed to the Wild West.

Here, of course, is where things got sticky. Let me preface this by saying that I obviously have terrible flying luck. I could count on one hand the number of times my flight to or from Wyoming has actually left on time. And keep in mind that I grew up in Casper, so I have taken that flight A LOT! And after the several issues we dealt with on this trip, a certain airline that flies into Casper (I won’t mention any names but it starts with the same word that USA starts with) and I are not on very good terms. The last 4 times we’ve flown with them has resulted in a strongly worded letter from me. Yes, I keep getting flying discounts for our troubles, but I’d rather pay full price and have a problem free flight.

All that said, our flight from BWI arrived in Denver at 9:30 am and our flight to Casper was supposed to leave at 11:15 am. After several delays, our flight was officially canceled around 1:30. The earliest flight they could get us on was 3:40 pm the next day, and there was no chance of standby since everyone else was also going to be on standby. After talking it over with Joe and my parents, I decided just to rent a car and drive the 4 hours to Casper. I’ve driven it many times before and the weather was beautiful, so it wasn’t going to be that big of a deal.

At the time I decided to drive, this young mom traveling alone with her daughter sat next to me and burst into tears. She was also on my flight going to see her mom and had had a rough day. Come to find out this was the first time she had ever flown in her life, and she had been up since 3 am with her 15 month old daughter, and neither of them had eaten anything all day. My heart went out to her, so I did what anyone in my shoes would do and offered to drive her to Casper. She was thrilled! We rented a minivan and 2 car seats, hopped in the car and off we went (of course we stopped at Chick-fil-a on the way). Her poor daughter was overly tired and cried most of the drive (which Ella was NOT happy about…she kept her hands over her ears for most of the trip), but we finally made it…and it wasn’t even dark yet!

GiGi and Paw Paw were at their musical show (more on that later) so Ella and I had dinner with the Burb’s (my brother and his family) and waited for GiGi and Paw Paw to arrive.

Saturday morning we woke up and spent the morning relaxing, then Sat night we headed out to see first hand what the entire city of Casper was talking about in their RAVE REVIEWS of Titanic, The Musical. Ok, so maybe the entire city wasn’t talking about it, but everyone in our world was talking about it, and the Casper Journal even did an article on my parents.

Yes, GiGi and Paw Paw played Ida and Isidor Straus, a German couple who were returning to America on Titanic. They were owners of Macy’s and Isidor had even served in the US House of Representatives (yes, they were a real couple). Long story short, they had been visiting Germany and were coming back to the US on Titanic. Of course you know the story of Titanic, and if you’ve seen the movie (which I’m sure you have) then you would recognize the Straus’ as the older couple lying in their bed as their stateroom flooded. When the ship was going down Ida told Isidor that she wasn’t leaving without him and how did he think that after 41 years of marriage that she would leave him now (coincidentally, GiGi and Paw Paw have also been married 41 years). Needless to say, they went down with the ship…but not before a stunning musical number that left much of the audience, and their 2 children and daughter-in-law, in tears. Unfortunately, the time difference caught up with Ella an hour into the show, and she fell fast asleep in my arms. The truth is, this was much better than the alternatives of her crying throughout the whole thing, or her getting too antsy and us sitting in the lobby for the duration of the musical. The next day they had a matinee, so we all returned and this time we took Ella and the twins inside the theatre just to hear GiGi and Paw Paw sing. We were all so proud!

It was a wonderful trip with too many things to mention in this post, so I’ll just hit some of the highlights.

· Ella caught a fish. Paw Paw had picked out a very special Princess fishing pole and attached a “practice fish” to it so she could get an idea of what she’s supposed to do. Well, she soon decided that she wanted a fish that moved (since practice fish aren’t real after all), so Paw Paw threw in his line and caught a fish, and Ella got to reel it in. She was so proud of herself.

· We got to go see Barney Live! Yes, I realize that this sounds annoying to most of you, but I assure you it was a good time. It was about 10 seconds into Barney’s first song, then Ella hopped off her chair and started dancing. She danced through the entire show!

· Sam and Nate have now been introduced to the world of Princessess. They watched Tangled, The Princess and the Frog, Snow White and Beauty and the Beast. Ella even let them play with her little Princess dolls. In fact, by the end of the week Sam had declared that he wants to be Prince Charming for Halloween.

· We got to participate in 4 very fancy tea parties. I think these may have been the highlight of Ella’s vacation.

· We visited 2 consignment stores, one for kids and one for adults. Ella got 2 new “no-legs” dresses and a Snow White dress (because apparently she needs more princess dresses). I also got some clothes.

· We went up on the mountain and had dinner at GiGi and Paw Paw’s cabin. We cooked hot dogs and smores on an open fire. Ella wouldn’t get close enough, so her hot dogs were raw and her marshmallows were white, but she had fun anyway.

· GiGi and Paw Paw have TWO antelopes on their wall, one upstairs and one downstairs. This was big news for Ella and she couldn’t wait to tell daddy all about it.

It’s kind of late and that’s all I can remember right now, but if something else spectacular comes to mind I’ll be sure and post it. We had so much fun with the family, of course it wasn’t nearly as fun as it would have been if Joe had gone with us. I’ll also get some pictures up soon. There is too much to catch up on after being away for 11 days.

Of course our trip wouldn’t be complete if our flight home wasn’t delayed. Instead of getting home at 10, we arrived at 11:30…then had to drive from Baltimore to Alexandria (about 45 minutes). At least there wasn’t any traffic.