Monday, June 29, 2009

HUGE Thank you…and some other stuff

You may remember this post from last year. Well, this weekend, almost exactly 1 year later, we were able to go back and visit the Eagles of MD again. When Ella was born, this group sponsored a CD that Jenni (my BFF) recorded to raise money for Ella. Last year we went to their meeting to thank them for the donation. In return, do you know what they did? They took up a collection for Ella to celebrate her 1 year birthday! This group is wonderful!

So this Sunday they had the official changing of the presidents (I don’t know what the technical term is). Every year the new presidents (1 man and 1 woman) choose a charity of their choice and the Eagles work all year to raise money for those charities. Well, this year BOTH of the presidents, Paul and Helen, chose Debra and EB as their charities! Isn’t that awesome! Joe and I were so touched by their generosity. They have such wonderful hearts that they want to help Ella and other kids with EB. They are making their symbol for the year a butterfly and they even had pins made that have a little butterfly on them made to look like an E and a B (it’s hard to explain so I’ll post a picture of one so you can see).

On the way home Joe and I were talking about their generosity. I have to be honest, I had never even heard of the Eagles until Jenni told me about them. What I will say is that in the 2 meetings we’ve attended, it has been evident that this group is full of the most genuine and kind hearted people. They are so friendly and welcoming. You know how you can walk into a room and immediately get a vibe for how things are going? Well, the Eagles give off a good vibe. And what Joe and I appreciate most is that they aren’t just SAYING that they want to help, they are actually DOING something to help Ella and other kids with EB. They are putting their words into action. We are so grateful to the Eagles for all of their help and we look forward to visiting again next year.

After visiting with the Eagles we headed home. All day Ella had been asking for one thing…ice cream. We put it off the entire drive up to MD and we put it off the whole time we were there. We’d say, “Can we get ice cream when we get home?” And our sweet little girl would say, “Ok, ice cream at home.” She’d be fine for about 10 minutes, then ask again. The good thing is that she never threw a tantrum for it, she would ask very nicely and was very patient when we told her she’d get it later. On the way home from MD she asked for it once again and Joe said, “She’s been so good today that I’m going to stop and get her some ice cream.” So we pulled over to McDonald’s and Ella got a Hot Fudge Sundae. She was so happy with her ice cream, although she wasn’t to keen on the hot fudge. She even shared some with mom and dad.

Joe decided that as a treat we were going to go to Hana Tokyo, a Japanese Hibachi restaurant near our house. This is one of our favorite restaurants, but we have been afraid to take Ella since we didn’t know how she’d respond to the fire and sitting at a table with strangers. What we did have going for us is the fact that Ella LOVES fried rice, so we knew there’d be something that she’d eat. Luckily she did great! Every time the fire would flame up she’d say, “Woah! Hot…WERY hot!” She ate almost all of her fried rice and even enjoyed some of Daddy’s chicken. She wasn’t willing to try my shrimp or scallops…which was fine by me!

Wednesday we leave for Cincinnati to have Ella evaluated by a team of doctors. We went last year and had her genetic testing done. This year is more of a follow up. We want to keep a record of Ella with their hospital in case she needs a medical procedure in the future. This is also a good place to visit because while we love Ella’s local doctors, it is always good to get her evaluated by doctors who work with other EB patients. I do have one BIG prayer request for this trip. Thursday is appointment day, so starting at 8:00 am Ella will meet with the Ophthalmologist, then at 11:00 am she’ll meet with the Dentist, and at 1:00 pm we’ll go to the EB clinic where we basically sit in a room for a few hours while various doctors come in and out and talk with us (last year we met with 11 doctors). During the clinic time we will also do a complete bandage change so they can take pictures of her wounds. This all makes for a very long day. I am completely dreading Thursday! Ella is so shy and very leery about strangers touching her, so I just know that this is going to pose some major problems for her evaluations.

Please pray that Ella will be less shy than usual and that she will allow the doctors to evaluate her as they need to. Please pray that Joe and I will keep a calm attitude in the room (which will reflect to Ella) and that the visits will go smoothly.

I am so nervous about the visit. Not so much about what they’ll say about Ella and her skin (we think she looks pretty good), but more about how she’ll respond to all of these strangers staring at her. The last thing we need is for her to flip out while we’re in the room. In filling out her paperwork I even put a “special note” about how shy she is and that the doctors should be prepared for it.

And one more thing…please pray that Ella will eat while we’re there. Last year she didn’t eat anything the entire day of her appointments. This year that would just make the day even worse (at least last year she still had a bottle). Anyway, if you all could keep those 2 things in your prayers for Thursday I would really appreciate it. Thanks!

The best part about going to Cincinnati is that Joe’s sister, Mo, and her family live only a few hours away. So we get to spend some quality time with them while we’re there. I’m glad that Ella will be able to hang out with her cousins, Alice and Edie (who is just 6 weeks older than she is) for a few days. I think we’re going to visit the aquarium! Fun times!!!

Wednesday, June 24, 2009

2 year check up

Let’s give a big shout out to our Chunky Monkey! We had Ella’s 2 year appointment today and she has gained 4 pounds since her 18 month check up. This officially puts her in the 21st percentile! Yahoo!!! This is a major improvement to the 7th percentile she was in at her 18 month appointment. She’s not getting as tall as she once was, she’s only in the 17th percentile for height, but she did grow a ½ inch so, some growth is better than none…and honestly, neither Joe nor I are really tall, so I’m not worried about her height. Besides, aren’t the short, petite girls always the cutest!

The other HUGE praise for the doctor visit was that Ella didn’t completely freak out! Ella’s shy…I’ve mentioned this before and anyone who has met her in person is well aware of her shyness…so visiting the doctor where strangers weigh, measure, poke and prod her is generally a disaster. It usually ends up that Joe walks around with Ella trying to keep her calm while I talk with the doctor. Today Ella did great. She sat in my lap for most of the visit while Joe and I talked with the doctor, and she even let the doctor examine her fully. It was amazing! The best part…NO SHOTS!!!

Can you tell I’m pumped up from the visit? It was good. And to add to the greatness, Ella’s pediatrician’s office recently moved to a new location right across the street from my office! This meant that Joe was able to drive Ella to the doctor, I walked across the street to meet them, we went to the appointment then I just walked back to work. How easy is that?

Monday, June 22, 2009

Happy Birthday Ella!

Dear Ella,

Yesterday you turned 2 years old…I can hardly bear to say it…2 years old! On one hand the past two years have flown by. I look at pictures of you at just a few months old and wonder what happened to my little baby. On the other hand we have experienced more in the past 2 years than most families go through in a lifetime.

You are such a sweet, beautiful and smart little girl. You know more than I think a 2 year old should know. Soon, you will know more than me, and that scares me. At 2 years old, your favorite activity seems to be coloring. You prefer to color on a blank piece of paper so that you aren’t inhibited by lines and pictures…I think this is a testament to your personality. You are a cuddle-bug. When we read or watch a show you like to sit on my lap and lean back into me. Sometimes you press your chubby cheek right next to mine and lean in. We will stay that way until I have to move, but you would be content staying cheek to cheek all day. You are quite the chatterbox and repeat everything we say. The Itsy Bitsy Spider and Twinkle Twinkle are your favorite songs. We sing them over and over and over again. I thrive on your laugh and will do almost anything to get you to giggle. You love being outside and looking at all the pretty flowers. As we walk we look at all the colors of the flowers and you bend down to gently kiss each one, then you stand up and say “Thank you flower!” You even call plants flowers and kiss them. My favorite image is of you and your dad going for a walk, hand in hand.

Even at the age of 2, in my heart I know that you understand your skin. You are different than other kids, and you know it. You are much more cautious and aware of your surroundings and you keep a safe distance from other kids who play much rougher than you do. But the truth is that you have been chosen. All kids are special, but for reasons none of us may ever understand, God decided, long before your dad and I saw your beautiful face, that He was going to give us a child that would reach thousands…perhaps one day, millions. My sweet girl, I firmly believe that you have shown more people God’s love and power in your short 2 years, than I have in my 32. Through you, people were able to witness a miracle. They were able to see a very grave situation turn to hope. They are able to look at a beautiful girl who has proven that God is still in control.

Over the course of your life you will have hundreds of questions. While I don’t have the answers to them, I can assure you that I have spent far too many hours asking the same ones. I would be lying if I said I wasn’t scared for you, and it seems the older you get, the more scared I become. Soon I will no longer be able to protect you from the stares and comments. Through it all please find comfort in one thing…you are not a mistake. You were hand picked to face these challenges, and as difficult as they are to endure, you are not alone. God loves you very much.

While I don’t know what the future holds, I do know that you have forever changed me. You have made me a better mother, wife, daughter, sister and friend. Because of you, I look at the world differently. Where I once felt incredible judgment, I now feel compassion…hope now replaces the impossible. You have a strength that puts my own strength to shame. I see a wisdom that is waiting to burst through. I see a beauty that runs deeper than skin. You are my precious little girl. You are my hero.

We spent your second birthday on vacation in Natural Bridge, VA. It was just the 3 of us and that’s exactly how we wanted it. You shared this birthday with Father’s Day, which was very appropriate. You are your daddy’s girl. The two of you have a special bond. We were staying in a cabin and you were watching a video while daddy and I rested. Every time something new would come on TV you’d run over to our bed and put your face right up to daddy’s face, nose to nose, and you’d yell “Hi Heart! Hi Heart!” until he opened his eyes and acknowledged you. You did this throughout the entire video, whether a heart, orange, kiwi, baby, blocks or letters of the alphabet. You wanted daddy to share in the joy of the video with you. You are such a special little girl. I look forward to every day we get to spend together. Each day with you holds a new adventure and I am excited to see what tomorrow has in store.

I love you,


Monday, June 15, 2009

Kind of random post

I have a few little stories that I wanted to pass along, but none of them really go together, so there isn’t any cohesiveness to this blog post. Next time I’ll do better.

Just yesterday I was reading my weekly “what your kid is doing now” email and it talked about how Ella is probably at the age where she’ll start playing with her food more and will “experiment” by mixing things together. The example they gave was that a kid may pour their orange juice in with their cereal just to see what it tastes like. Huh, interesting, but Ella isn’t one to mix her food. If I give her mixed veggies she picks out the corn first, then the peas, then the carrots, etc. So I was sure this was a phase she’d probably skip. Well, last night Ella came up with a great idea…pour her water into her beans. Yummy! At least it was only water and not something much more disgusting. And at least she ate the beans with the water.

Ella is really starting to try to help out with her bandage changes. Tuesday night I was prepping everything for Ella’s bandage change. I had everything cut and taken care of, and Ella was happily playing next to me. I left the room for about 5 minutes to get some things for the bandage change, and when I returned I found Ella standing at the bandage table with cream all over her face, chest and hands. She looked at me and said, “Good Girl!” Ella is really starting to want to help with her bandages. She knows the basics of how it all works. She gets the wooden tongue depressors and sticks them in the lotion or ointment, and then gets a Mepilex Transfer and starts trying to spread the ointment the same way she sees mommy do. Then she’ll try to stick it on her tummy. And she takes the gauze and tries to wrap it around her tummy. Soon she’ll be able to do it all on her own.

Ella has also recently started humming. She’s always been a singer…since she could form words she has been singing along to her music. But just recently she has started humming along whenever there’s instrumental music. I love that she is discovering that she can make different sounds by changing her mouth. I think she picked this up from Paw Paw when he was here a few weeks ago. Anyone who knows my dad knows that wherever he goes he’s either whistling or humming (with the occasional “da da” stuck in there). I’m a whistler...if I’m walking anywhere I’m usually whistling whatever song is stuck in my head. It now seems that Ella is a hummer. I like it.

In other Murray news, we got a bird feeder for our backyard. Joe and I are so excited about it and were really upset that the birds didn’t instantly flock to our feeder. We sat at the window and watched for birds for about 2 hours. Our neighbor assured us that it would take a couple of days for them to show up. I’m keeping my fingers crossed. We also had a great carpenter come over and lay plywood in our attic and hang our basement screen door (and fix a couple other odds and ends around the house). This meant that we were finally able to move all the junk stored in the guest room closet and in the laundry room up to the attic! The laundry room is so clean now and I can actually iron...although I’m not a fan of ironing so it doesn’t really matter.

Saturday morning Joe had class all day. He rarely has class on Saturday, but he’s taking a summer clinic where they learn to actually work in a law firm. Basically, the school has a law firm and the students handle the cases. So this weekend they had a special class where they learned how to write a Will and things like that. He had to be at school at 8:30 am on Saturday. I’m not really sure what happened, but all of a sudden Joe woke up and looked at the clock (next to my side of the bed) which read 8:35am! I know you all have been in that position before. Complete panic set in! Joe jumped up and ran to the shower. Raced through the shower as quickly as possible, threw on some clothes, and ran to his office to grab his blackberry and school stuff and race out the door. He grabbed his blackberry to call his partner for the clinic and just tell him that he was on his way. As he did he noticed the time…6:30am. What? So he turned on the computer…yep, 6:30. So he came in and asked me what my cell phone said…6:30. My alarm clock is a consistent 15 minutes fast…that’s on purpose because I’m always late…but it is not usually 2 hours and 15 minutes fast. So what was my first response when he told me the news, “Good, that means you can change clothes into something that actually matches.” Then we had a good laugh about it. I went back to bed but Joe stayed up and guess what…he was the first one to arrive for class.

I have a lot of pictures to download, so I’ll try to get to those tonight. We are very excited because this weekend we are going on vacation to celebrate Ella’s birthday and Father’s Day. We’re spending 4 days and 3 nights at Jellystone Park in Natural Bridge, VA. We rented a little cabin out there and I am so excited to get out of town for a few days. It’s going to be fun!

And no, I’m not even thinking about the fact that in just 6 days my sweet little girl will be 2 years old!

Monday, June 8, 2009

Sunny Days Sweeping the Clouds Away...

It rained every day last week…and I was tired of it. Luckily, just like the song says, the air was clear at Sesame Street and we had beautiful weather to tour the park. Saturday morning we left for Sesame Place. Joe’s sister, Katie, and her husband, Jarrod, have a son, Andrew, who is just a few months younger than Ella, and since they only live about an hour from Sesame Place we thought it would be a great opportunity to take the kids there to see some of their best friends.
Given the heat and the attention span of two 2 year olds, we decided to go at twilight. This cut the cost by about $20 and meant that we only had to stay 4 hours. Also, I was afraid that the trip was not going to be completely pleasant and that at least one of the kids would be more scared of their monster friends than excited to see them. I’ll take this opportunity to note that Ella was decked out for her Sesame adventure in one of her Elmo shirts, her Elmo socks, and one of her Elmo hair ties. She was Elmo’d out! The first order of business was to see a show with a new character, Raggs. It was a solid 30 minutes of music and dancing.

Ella loved it. She danced the entire time and even tried to do the motions that they were doing. If they raised their hands, Ella raised her hands. If they swayed their hands, Ella tried to sway her hands. It was hysterical. And after every song Ella would turn around to me and say “Again?” We were some of the last people to leave because Ella and Andrew were having too much fun playing and dancing.
After the show we went to grab a little snack. Ella got ice cream and ate a good portion of it. I think she especially liked the sprinkles…that’s my girl! As luck would have it, we walked out of the dining hall and happened upon a showing of Elmo’s World LIVE!!! Imagine, Elmo in REAL LIFE!!! Could a 2 year old want anything more? During the show she just sat and watched. She didn’t seem too excited about it, but the minute the show ended she started asking for more Elmo, and once again we were among the last to leave.

Next came the Carousel. Joe was afraid she would be scared on it, but not our little trooper. She LOVED it! I think the see saw prepared her for the up and down motion, and she really liked being up close and personal with the horses. She informed me that her horse was “yeyyow and fween,” aka, yellow and green. You can’t see her face in the pictures because her arm was covering it up, but I assure you she was smiling from ear to ear! The second the ride ended she said, “Horsie again?”
Finally, the highlight of the night came when they had the Sesame Street Block Party Parade. How could anything get better than having all of Ella’s favorite characters all in one place! We saw everyone…Cookie Monster, Big Bird, Bert and Ernie (and Bert was doing some serious dancing), Elmo and Zoe, Oscar, and Rosita. Not only was Ella not afraid of the characters, she was beyond thrilled to see them up close and personal and kept yelling their names over and over again.It was a fun time! I am so glad we were able to take Ella and we have already started planning our trip for next year.
Of course, our trip would not be complete without a stop in downtown Philly for some authentic Philly Cheese Steaks. At the direction of Jarrod, we opted for Geno’s instead of Pat’s, no offense to the Pat’s fans out there. Next time I promise we’ll go for Pat’s. At both places the lines were wrapped around the building. I was given clear instructions on how to order. You have 2 options…with or without. With means with Cheese Whiz. Without is obviously without Cheese Whiz. I opted for with..without onions. I was too scared to order (it all goes back to a bad incident that I had in Boston while trying to order pizza…this young Wyoming girl didn’t do it right and the guy behind the counter yelled at me…I still have nightmares), so Jarrod ordered for me. The best part, Ella even loved it!

It was a great trip and we can’t wait to do it again.

Wednesday, June 3, 2009

New Swing Set!!!

Sorry for the extremely long delay in posting. GiGi and Paw Paw have been in town, so our time has been spent having fun with them. While they were here, they built something VERY special for Ella, and GiGi wrote a song all about it. While I can’t fully explain the tune, below are the words with pictures to accompany them.

Ella’s got a slide in her yard.
Ella’s got a slide set in her yard.
She’ll slide down so fast,
Just like a rocket blast.

Ella’s got a slide in her yard.

Ella’s got a swing in her yard.
Ella’s got a swing in her yard.
She’ll swing so high,
So high she’ll touch the sky.
Ella’s got a swing in her yard.
Ella’s got a seesaw in her yard.
Ella’s got a seesaw in her yard.
She’ll seesaw up and down,
And her feet will bounce on the ground.
Ella’s got a seesaw in her yard
Paw Paw built the swing set in her yard.
Paw Paw built the swing set in her yard.
He built it just for Ella,
‘Cause he’s a special fella.
Paw Paw built the swing set in her yard.

GiGi helped put the swing set in her yard.
GiGi helped put the swing set in her yard.
She helped Paw Paw do,
‘Cause it’s a job for two.
GiGi helped put the swing set in her yard.

That’s it folks, the swing set song. Ella loves her swing set. When she saw the completed product she got so excited and yelled “SLIDE!!!” Of course it started pouring rain about 2 minutes after GiGi and Paw Paw finished, so she wasn’t able to play on it that day. Luckily Saturday was a beautiful day and she was able to fully enjoy her new swing set. Savannah even came over and the girls were able to seesaw together. We had to run a few errands and as we were getting things ready to leave, Ella was standing at the window looking at her new swing set. Since then, every morning the first thing she wants to do is go outside and swing. Needless to say, this was a good investment.