It's hard growing up

So last week Ella attended K-Prep at her new elementary school.  For those of you who don’t live in the City of Alexandria, K-Prep is basically practice kindergarten.  It’s just the kindergarteners in the school and they are only there for a half day.  This gives them the opportunity to get to know the school without all of the other students running around.  It also gives kids who have never attended preschool, an idea of what school is really like.

Going into the week I knew things were going to be rough.  Ella does not like new “adventures” and now she was going to be experiencing something completely new…new school, new teacher, new friends (only 1 little boy from her preschool is at the school and they are in different classes), and a new aide.

Monday morning was rough.  Joe and I did go into Ella’s class and talk with the kids about Ella’s boo boos.  They just listened and didn’t have any questions.  Ella cried when we left, but I could tell she was really trying to be brave.  I left for 30 minutes to drive Joe to work, and soon I got a call asking me to come back to the school.  I spent the rest of my day sitting in the hallway…except for the 5 minutes that I ran to the office to ask a question.  When I came back from the office Ella and her helper (not her permanent aide, but a nice teacher that was helping her for the day) were sitting in the hallway and Ella was hysterically crying.  A little boy had accidentally stepped on her toe.  Ella was a complete mess!  I comforted her, looked at her foot, and encouraged her to go back into class.  The rest of the time I sat in the hallway right outside her room.  When the rest of the kids went to lunch I picked Ella up and we went out for a special lunch.

Tuesday was a complete disaster!  In a nutshell, Ella started crying the second she woke up and cried all morning.  This made me frustrated, so I started crying too.  Poor Joe had to do all he could to keep us both together.  Ultimately Joe spent the day working from his blackberry while sitting in the hallway of the school, I came home a complete mess, and Ella stayed in class and every 5 minutes her helper would come out to make sure Joe was still there.

Wednesday I was on my own.  There was a new helper for Ella that day, so I dropped Ella off in the morning and sat in the hallway until recess (around 10:30).  When the kids came in from recess I headed home.  Ella still cried and was a mess, but I knew I couldn't spend another day sitting in the hallway and she needed to try and do this on her own.

Thursday and Friday I did the cut and run…take her to the cafeteria (where she gets dropped off), hug and kiss Ella, reassure her that I love her more than anything and am so proud of how brave she is, then walk out the door.  I can’t spend my entire days in the hallway, and it’s not healthy for Ella if I do that.  She still cried a lot and clung to me as hard as she could, but both days when I picked her up she had a huge smile on her face.  She was so proud of herself for going to school and making it through the whole day without me.  The two ladies that were her helpers were terrific!  They were very understanding and helped Ella cope the best they could.  According to the second helper (Wed-Fri), Ella stopped crying within minutes of me leaving, and she was fine all day.  She didn’t ask where I was or say that she needed me.  That’s good news.

I’d be lying if I didn’t question whether or not Ella is ready for this.  I know academically she is more than ready, but I don’t want to do permanent emotional damage by forcing her to go to school when she’s not ready.  On the flip side, I don’t want to do permanent damage by not having her try new things, even things that seem scary.  It would be extremely easy for me to shelter her forever, but I don’t want Ella to be 35 and still living at home because she’s scared of moving out of the house.

I had to keep reminding myself that this was just the first week.  Hopefully when she meets her permanent aide, and starts to feel more comfortable with her new surroundings, then she’ll start coping better.  If things haven’t improved by December, we may have to reevaluate our situation.

The good news is that while I was sitting in the hallway I heard the teacher call on Ella to answer a question.  Ella answered with confidence.  She still refuses to raise her hand in class, but at least when she’s called on she’ll give an answer.

All of this to say, please pray for Ella (and her parents) during this transition.  School starts September 4^th and my plan is to not leave the house for the first few weeks.  We only live 2 blocks from the school and Ella knows that it takes just 1 minute for me to get there if something were to happen.  Please just pray for peace and that her anxiety will diminish.  Thanks.

Deepest Apologies

My deepest apologies for not posting for over a month.  We’ve been doing some VERY exciting things and honestly, posting on the blog wasn’t a priority.  Sorry.

On Tuesday July 17^th (my awesome husbands birthday!) Ella and I headed out to Wyoming to spend 28 days with my family.  Yes, 28 days.  We had several motivations for such a long trip.  1)  We wanted to escape the DC heat to get to the cooler mountain air.  2)  We wanted to see how Ella’s skin would respond in a drier climate, and 3) We wanted to spend some quality time with the Alexander family!

We had a great trip and Ella got to participate in a lot of fun, outdoor activities that we don’t typically do here in DC.  Here are some of the highlights.

She got to float the Platte River in Paw Paw’s canoe

She got to roast marshmallows at GiGi and Paw Paw’s cabin on the mountain

She got to spend the night in Paw Paw’s tee pee

She got to take both Hip Hop and Ballet dance lessons

She got to spend lots of fun time with her Texas cousins

On top of all of this, Ella also got to see a puppet show at the library, see a Cat in the Hat story time at the library (you know she loved that), went to the planetarium, went to a band concert in the park, saw a musical at Casper College, got to meet SO many awesome friends and some very special people to her mommy, watched a ton of Olympics, cooked with GiGi and so many more fun activities!

It was a great trip!  My brother and his family also got to come visit, so there were 9 of us all staying at my parents house (10 when Joe arrived on August 4^th).

Since we don’t have any immediate family close by, we don’t really get to take advantage of their free babysitting, so while we were in Wyoming Joe and I tried to make up for it.  My dad babysat Ella one night so I could go see my mom’s play, and both of my parents babysat her for 3 nights in one week, so that Joe and I could catch up on our movie watching.  Oh yes, we saw 3 movies in 1 week and loved every minute of it.  While in Wyoming Joe and I celebrated our 7 year anniversary!

When you ask Ella what her favorite part of Wyoming was, she says that it was throwing rocks in the river.  When daddy joined us, that was the first thing on her list to show him.

My mom's play, "What Were We Talking About?" went off beautifully!  They had 2 nights completely sold out and the third night was almost sold out.  They got standing ovations every night and the audience laughed and cried with all 4 characters.  It was a wonderful play and I'm so glad I was able to go see it.

This week has been K-Prep at Ella's school.  I'll save that for the next post since this is already way too long.

What Were We Talking About?

Ella’s GiGi and three of her best friends have been working on a very special project over the past 2 years.  They decided to write a play.  Yes, they wrote a play.  It’s not every day that 4 middle aged women (sorry ladies, just speaking the facts) just decide that they’re going to write a play.  So now that the play writing is over, what’s next?  Well, you perform it of course!

Starting this Friday night, GiGi and her friends will be performing “What we were talking about?”  A story about…well, about their lives.  I can’t wait to see it!

This play is being done to raise money for Debra of America, a non-profit organization that helps families impacted by EB.  All ticket sales will go to Debra, and donations may be made to Debra in honor of Ella Murray or this play.

This is the first time we are asking for financial support through this blog to benefit EB research as well as family support services for those impacted by EB.  If you feel led, we’d appreciate it if you could donate to Debra in honor of Ella and the wonderful work of GiGi and her pals' efforts in creating and performing“What were we talking about” by clicking on this website below:


https://secure.commonground.convio.com/debra/personalfundraising/project.html?personalFundraisingProjectId=a0qA0000001ZKguIAG&showMessage=true

Beauty and the Beast...and some other things

Did you hear about the big storm that ripped through Northern VA?  No?  Well then you missed out because we had a doozy and the Murray’s got to experience it in full force.  First, Ella and I were on a plane and we flew through the storm…yes, you read right.  The storm was approaching Cincinnati as Ella and I were leaving there, so the pilot wanted to leave before we hit any of the really bad weather.  The result…the first 30 minutes of our flight were spent with Ella clutching my leg and hunched over in my lap while I kept faking a smile and telling her it was all going to be ok.  Meanwhile, my mind was going over everything in my life and making sure there was no stone un-turned.  No joke, I seriously thought we weren’t going to make it home.  It was the worst flight I have ever been on!

We did make it home and a few hours later as we were getting into bed, we heard the wind outside and soon the power went out.  We were without electricity for 2 days and without home phone and internet for 1 week.  Thank heavens for friends and our basement!  The first night I knew it was going to get hot really fast, so we all moved to the basement.  Ella was very excited to sleep in her new Cat in the Hat sleeping bag.  Saturday we spent the entire day at our friends house.  They hadn’t lost power, so we took some of our food over there to put in their refrigerator, and made them dinner as a thank you.  Sunday we headed to church, then avoided coming home any way we could…lunch out with friends and a movie was the perfect diversion.

At 3:45 am on Monday morning I woke up to a bright light staring in my face.  At first I was mad…”What in the world is that light doing on?”  Then it hit me…THE LIGHT IS ON!!!  And I hear the AC running!!!  I was giddy with excitement, so giddy that I woke Joe up to tell him the good news.

Of course the day we finally got power I woke up sick.  I’m rarely sick enough that I’m completely laid out, but that’s exactly what happened.  For 2 days I did nothing but lay in bed, sleep, and wallow in self-pity with how sick I was.  By Wednesday I was back to feeling half way normal and was able to clean up our messy house.

There you have it…my excuse for not blogging sooner.  The above, and the fact that Ella and I were in Cincinnati for 3 days prior to losing power.  She got her belly button changed out with something smaller and more permanent…she did awesome…no biggie.

So now I’ll back up and try to catch you all up.

Thursday June 21 was Ella’s official birthday.  She insisted on wearing her Cat in the Hat outfit for the occasion.  I still can’t believe we have a big 5 year old!  Where has the time gone?

As a special birthday surprise, a friend of ours got us tickets to go see the musical version of Beauty and the Beast at National Theatre in DC.  My parents had taken me to see this show when I was in high school and since Ella loves all things princesses, I knew she would love this show too.  As an added bonus this friend (who works for the production company that puts the show on) got us a very special meet and greet with Belle.  Yes, we got to meet Belle in real life!

  

We decided to keep this a secret from Ella.  We knew that if she knew anything about it she would wake up every morning asking if today was the day she’d meet Belle.  She did, however, know that there was a special birthday surprise and that she would find out about it on Sunday morning.  So on Sunday morning Joe and I were laying in bed sleep and at 6:30 am we heard, “I’m awake.  What’s my surprise?”  We tried to get her to go back to sleep, but there was no way that was happening.  Finally we went in and told her all about how she was going to meet Belle in real life and see her since and dance on a stage.  Ella was beyond excited!  She picked out a very fancy dress to wear for the occasion and made sure Joe and I were both up and ready with plenty of time to spare.

We arrived at the theatre and soon headed upstairs to wait for Belle.  Ella was her typical shy self, but she did ask Belle a very important question, “How many books have you read?”  Belle gave Ella some very special presents including an authentic Beauty and the Beast rose, a t-shirt, a purse, a book that Ella has looked at no less than 500 times, and of course a Belle tiara.  They talked and got their picture together, and even twirled their dresses together.  It was SO AWESOME!!!  Ella loved it so much…and so did her parents.

Ella watched the show with full attention.  I don’t think she took her eyes off the stage once the entire show.  At the end, as the characters were all taking their bow, I couldn’t help but cry.  It had been such a wonderful show and wonderful experience.

I have always been so thankful to grow up in a family that took me to plays and musicals from an early age.  Even though many of the things we saw were local productions, it was the appreciation of theatre that I developed.  I was 13 when I saw my first real life Broadway level musical…Phantom of the Opera (with Michael Crawford I might add…if you don’t know who he is you need to look it up).  I am so excited that even at 5 years old Ella is developing an appreciation for theatre.  She loved every minute of the show and I am so thankful to our friends for getting us tickets and especially for introducing us to Belle.

Almost 5

Saturday was Ella’s 5^th birthday party.  Her official birthday is on Thursday June 21^st.  She is very excited about being a big 5 year old!

Ella chose the theme of her birthday about 6 months ago…Cat in the Hat.  I was very excited about this theme because we are big Dr. Seuss fans around here and I thought I could come up with some fun Dr. Seuss activities.  All along the way Ella kept reminding me that this is NOT a Dr. Seuss birthday party…it is a Cat in the Hat birthday party.  There is a BIG difference when you’re 5.

Ella also took it upon herself to decide which characters we all would be.  Of course she was the cat, poor Metti was chosen to be the fish, and Joe and I were chosen to be Thing 1 and Thing 2.

Once again, Metti and I spent all day decorating.  I definitely bumped things up a notch from last year.  The good thing about the Princess party last year was that there is a TON of princess stuff to buy.  Every store I went to had something different I could add to the mix.  That isn’t the case with Cat in the Hat.  In fact, any Cat in the Hat specific stuff I had was ordered by Grammy off the internet.  I did find some wall decals at Target, so those helped enhance the theme of the party.  I also found a hat and some paper hats to tape around the room.  The rest of it was self made.  There were no Cat in the Hat invitations to be found, so I had to make them myself.  And all of the rest of the decorations were in red and white.  I wanted it to look silly like Dr. Seuss is known for.  When Joe came home from work after we had decorated, I can honestly say that he was speechless.

Our original thought was to have an afternoon party starting at 1 and ending at 3.  Well, Ella is convinced that a birthday party isn’t a party without pizza, so we moved things up an hour and included lunch in the deal.

I learned my lesson last year when I had 3 activities planned and 2 of them took a total of 30 minutes, so this year I planned several activities.  I had 2 that I knew would take longer to do, and I had 3 more things in my back pocket in case we rushed through the first two faster than I anticipated.  I also made sure the back yard was in full working order and the lawn was mowed so that the kids could play on the swing set.  We started off with some good, old fashioned balloon bouncing.  Fact:  kids love balloons.  It doesn’t matter what size, color, shape, whether it has helium, none of that matters.  Kids love balloons.  Metti and I blew up 50 red and white balloons, yes, 50, and it was totally worth it.  I had them covering the floor and the kids loved it.  The balloons alone took up a good 30 minutes.

Next came pizza, and what goes better with a main dish of pizza than a side of candy?  In my defense I did email Joe and ask him if he thought I should have some fruit or veggies available.  He decided that I didn’t need that healthy stuff (it was a birthday party after all), so it was pizza with Sixlets candy, Swedish Fish and Goldfish crackers.  Yummy!

Third came ‘Pin the Hat on the Cat.’  This young generation hasn’t played most of these old standby games, so this was new to all of the kids.  They thought it was hysterical!  Shockingly most of them did a great job and got really close to the cat’s hat.

Fourth we played a game called ‘I can do that.’  It’s a board game that you can get at Target, and I just adapted it for a birthday party.  It comes with several objects from the Cat in the Hat book (fan, toy man, fish bowl, cake, Mother’s new gown, boat, rake, etc).  Before the party I had typed out several activities to be done with these objects.  The girls would draw a piece of paper out of a bag, then perform the activity.  For example, the paper would say “Walk backwards around the Trick-a-ma-stick while holding the toy man between your knees.”  This game was a big hit with Ella when I first brought it home, and it was a big hit on Saturday..

 

Last but definitely not least, we had ice cream bars outside (I mentioned last year that Ella isn’t a big fan of cake, so we get creative when it comes to birthday dessert) then played on the swing set.

The kids all had a great time and most importantly, Ella loved it.

Ella woke up bright and early at 7 am because she was so excited for her party, so after her friends left all she wanted to do was lie on the living room floor and listen to her music (that’s how she unwinds).  It was a great birthday party and on Sunday Ella started thinking about what theme she wants to have next year.  I assured her that she didn’t have to decide right away and that we would talk about it the closer it got to her 6^th birthday.

Great News!

Ok, we just got back from the doctor and have several pieces of great news.

First, Ella’s iron is at a 10.9!  This is the highest it has been since she was a baby!  She had another blood transfusion last week so we’re attributing the good iron to that.  I don’t really care what the reason is, I’m just glad it was up.  In fact, the doctor was so pleased that we didn’t have to stay to get another infusion.  Ella was beyond excited for that!

Second great news, Ella is 30.9 pounds.  She has almost gained 5 pounds since getting her g-tube.  We are so excited about this great weight gain.  It’s starting to taper off since her body has pretty much adjusted to the new calories, but she’s definitely still growing.

Third, Ella’s skin is finally looking better.  She still has a couple of rough areas, but all in all she’s looking significantly better.  She had some pretty severe wounds on her legs that were causing a lot of pain and we were having trouble getting them healed, but on Wednesday they finally looked better.

That’s all there is to update you on.  We’re all so glad to finally be seeing some positive results.  Thanks so much for all of your prayers.