EB AWareness Week 2010

Hey Folks! It’s me, Ella. Since my mom is a control freak, I’m pretty new to this whole blogging thing, but I thought I would give it a try.

This week is EB Awareness Week. I know most of you have done your research and know all about EB, but for those of you who are new to this, here’s the basic gist. We all have 2 layers of skin, the epidermis (top layer) and the dermis (bottom layer). Between those 2 layers of skin there is this stuff called Collagen VII protein. It’s like the glue that keeps the 2 layers of skin connected. Because I have EB, I don’t have Collagen VII, so my top layer of skin separates from my bottom layer of skin and either blisters, or just peels off.

Only 20 babies out of 1 million are born with EB, and only about 2 out of those 20 are born with Recessive Dystropic EB (which is what I have). Yep, this means that I’m pretty rare. In fact, for most of you I’m the only person with EB you’ll ever meet!

So, here’s how you can help. For starters, you can keep me and all the other EB kids in your prayers. We all can definitely use them! And you can pray for Debra, that’s the organization that helps families who have kids with EB. You can also pray for the researchers that are working hard to find a cure.

If you’d like to take your help to the next level, you can donate to Debra. When I was born the nice people from Debra sent a big box full of stuff to help me out. My mom cried when she got the box (she’s a crier) because she was so overwhelmed with all the generosity. Debra also has a staff full of very nice people who are willing to help out whenever we need it. Sometimes mommy emails Geri so much that I get embarrassed! (Geri is the nice nurse that helps EB families when they have questions or concerns.) My mommy and daddy support Debra because it not only helps with research for a cure, but also provides family assistance needed today. My mommy says that when I was a baby she was so overwhelmed that she didn’t care to know what research was going to be coming in the next 10 years, mommy and daddy needed help to keep me alive, and Debra provided that help. Debra also organized the conference for EB families that my mommy, Boppie and I went to in June.

If you want to, you can also buy some jewelry that supports EB research. This jewelry company, Satya, has been working with Courtney Cox to develop beautiful jewelry for EB awareness and the proceeds go to EBMRF, an organization that focuses on research for EB. My mommy has the little silver butterfly necklace and matching earrings and she loves them! I think she wears them almost every day! This is killing 2 birds with one stone…you’re donating to EB research AND you get to promote EB awareness by wearing butterflies. How cool is that?

Ok, well Sid the Science Kid is on TV, so I’ll catch ya later. Thanks for all of your prayers and everything you do for my family. We love and appreciate all of you SO much!

Ella's Art

Ella has really become quite the artist. Below I am featuring a few of her more stunning pieces.

This is a painting of daddy. You can't see the facial features because they are also done in orange. The brown streak below is "Daddy's going poopie." Nice.

Here is mommy. I'm "going wee wee." At least she gets the concept of going potty, even if she won't go on the potty.

This is Larry the Cucumber and Bob the Tomato. Larry is the big one (obviously) since he's taller than Bob. The lines on Bob's lips are his teeth.


This is mommy and daddy.


I had to post this to show what our genius child learned how to write.



Ella, mommy and daddy. Notice the bow in Ella's hair. And as for mommy's hair, every time she draws a picture of me she says, "And here's mommy's crazy hair." I'm starting to get self-conscious. Notice how daddy only has one lone hair on the top of his head. :)


Here's a picture of GiGi. I drew the one on the left (because I'm such a stellar artist) and Ella drew her version next to mine.


This is GiGi in a field of flowers. I drew the one flower as a template and she drew the rest.

There you have it. Maybe I should save all of these pictures in case one day she's the next "big thing" in the art world.

Definitions

Juris Doctor: a first professional graduate degree and professional doctorate in law.

Esquire: in the United States, the suffix Esq. is most commonly encountered among individuals licensed to practice law.

So what does the above mean? Well, it means that in December when Joe finished his law classes and received his diploma, and in May when he went through the graduation walk, he was a JD. He had officially completed his doctorate since his classes were done.

BUT…

Today, he’s an Esquire! Yep, we found out this morning that Joe passed the Virginia bar! I am so proud of him I could pop! Ella and I were at the eye doctor for her check-up and Joe called while we were in the waiting room. Do you have any idea how hard it is to go into a doctors appointment and act normal when you’re so excited you could jump out of your skin? Well let me tell you, it’s HARD!

Needless to say, this is great news and Joe will be sworn in to the Virginia bar the beginning of November.

Weekend Update

This afternoon I dropped GiGi off at the airport. This morning Ella and GiGi determined that 1 GiGi just isn’t enough. There need to be 3..1 to stay here with Ella, 1 to stay in Texas with Sam and Nate, and 1 to stay in Casper with Paw Paw. That sounds about right to me. We had a great time the past 2 weeks. It was fun having Ma here as I began my new life as a SAHM.

This weekend we had a ton of fun! We went to Durham, NC to visit my cousin, Lindy, her kids (Kit and Cameron) and my uncle (Don) and aunt (Fran). It was a great trip, although Ella had to warm up to the idea. The entire drive down (about 5 hours) she kept saying, “Mommy, I want to go to Ella’s house. Can you find it?” But once we got there she warmed up to everyone and it was a lot of fun.

Friday Ella and I headed over to Winston-Salem to hang out with Jonah and his mom, Patrice. It’s always great getting together with other EB families. We get to compare notes, ask questions, and really just hang out with someone who actually knows what your life is like every day. Jonah is ADORABLE! I almost wanted to steal him to come home with me, but my better judgment got the best of me and he stayed with his mom. Ella is in this whole new whiny phase (ugh) and she was especially whiny while we were visiting. It was still great to finally meet Patrice in person. We’re going to have to get back down there soon.

Saturday we connected with Megan for lunch. It’s always great to see her, and I remember how much fun it was as a college student to have people take me out to lunch. My mom and cousin were eager to meet her, so we went to a place called “Elmo’s” and Ella ordered a chocolate chip pancake. Ma and Lindy were as impressed with Megan as I am. She’s an amazing and hopeful person.

Saturday night we went out to dinner to celebrate my aunt’s birthday. Sometimes I am so confused by what Ella orders. The chocolate chip pancake didn’t surprise me at all, but Saturday night she ordered the childrens salmon, and she ate almost the entire piece. She loves fish, but she usually eats fish sticks. I guess I just didn’t expect her to eat that much plain salmon.

Sunday we had a great breakfast then headed back to DC around noon. We had the pleasure of stopping at Sonic for lunch…YUMMY! It was so much fun hanging out with the family. When I first moved to DC I’d go to Durham at least once a month for a visit, but as I got more responsibility in my life, my visiting time was cut back. Kit and Cam are such great kids and I love hanging out with everyone. Hopefully we can get back soon.

Thankful

My biggest concern for Ella has always been her future. What will she do? How will she function? Will there be people around her to help? And most weighing…will she be accepted? My heart aches for Ella and the comments that she will endure. I want to believe that she’ll be fine and others will see her as an equal, but the reality is that I hear the comments and see the stares, and I know that one day (sooner than I’d like) Ella will also hear the comments and see the stares. And as equally concerning…will she be included, and if so, how?

As I mentioned previously, I’ve been spending Ella’s preschool days close to the church. I’m just not ready to venture too far. Call me overly protective…call me paranoid…I say I’m just being cautious (ok, and a bit paranoid…and overly protective). My time is much more productive than it sounds, and the last 2 preschool days have actually been pretty productive. Today, for example, I cleaned out the van. That was quite the task and it took me 2 hours to get it done. Half way through my dust buster died, so I only got a portion vacuumed. I digress…after I was finished cleaning out the van, I had a couple of phone calls to make and a lunch to eat, so I was sitting in the drivers seat. As I was finishing up my sandwich, I saw Ella’s class come outside to play.

Ella didn’t know I was there. Her teachers didn’t know I was there (I’m pretty sure). I was just able to watch and see how things played out. I felt a little guilty, almost like I was eavesdropping on someones private conversation. I justified my watching by telling myself that I didn’t plan for her class to come out while I was sitting right there, and I surely didn’t know that her class would go to the playground near my van (we have 3 playgrounds and the other 2 weren’t in sight of my van). During recess Ella didn’t run around and play like the other kids. She just sat on a bench next to the teachers assistant. I know it sounds sad, but it didn’t bother me. Ella isn’t the kid that’s going to be running around the playground. I think it’s partly because of her EB and partly because that’s just her temperament. There are lots of EB kids that run around and play right along with their classmates, but Ella’s more of an observer. She likes to just watch and see what other kids are doing. She’s the 3 year old who sat through a 2 hour Senate hearing without making much noise. She’s the kid that can sit through an entire Sunday morning church service without making a peep. She’s just that kid. Besides, at least she was getting fresh air, right?

Soon I saw Ella’s teacher call all of the kids over near where Ella was sitting. They all sat in a circle on the ground and did an activity that included everyone…even Ella (who got off the bench to join the kids on the ground). I don’t know if it was planned as part of their lesson for the day, or if she saw that Ella was separate from the other kids and was trying to include her. I don’t know what the activity was or how long they played. What I did see was the teacher make an effort to ensure Ella was included, and that meant so much to me. It made me so thankful that we attend an incredible church full of wonderful people. It made me thankful that our church has a preschool that was willing to take Ella as a student. It just made me SO thankful.

With tears rolling down my cheeks I turned on my car and drove out of the parking lot. It was time to let go…even if I did just go to the grocery store down the street.

One Week Anniversary

Today marks my one week anniversary of being a SAHM. It’s been a roller coaster already! Ella is doing much better, thanks for all of your prayers. Tuesday night she started perking up, and by Wednesday she was doing significantly better. Thursday she was able to go back to school!

Yesterday was a big day for the Murray’s. Ella went to church school all by herself! Yep, no mommy, no daddy and no Metti. Just her in a class with the teachers and other kids. This is a big deal! That was the first time in her whole life (pretty much) that Ella was somewhere without Metti, Joe or I there with her. I’ve been in close communication with her teacher and the preschool directors (let’s face it…they’re probably sick of me) and we all decided that we would give Ella a shot at going to class alone. So on Thursday I walked her to class and dropped her off, just like all of the other kids parents do. It was a leap of faith, but I did it…without tears! Then I spent the rest of the day sitting near the church with my cell phone in hand, just in case they needed me. J It wasn’t as pathetic as it sounds. It was actually really peaceful. I sat outside in the beautiful weather with my mom for an hour until her friend came to pick her up for lunch, then I went in the car and read some magazines that I had gotten from the church. I don’t have a lot of time to just sit and read, so it was pretty relaxing.

When I dropped Ella off I had told the teacher and the assistant that Ella’s eye was still really sun sensitive, so she might not want to go outside to play (she kept her eyes closed the whole ride over there because she said it was too bright), and if that was the case, just give me a call and I’d come get her. Well, around 12:30 I went inside to go to the bathroom. Of course I got to talking to some friends, and next thing I know I see a sweet little Stinkerella walking toward me. Just like I had predicted, she didn’t want to go outside to play, so the assistant was walking around and found me. So she only stayed 3 hours, but I thought that was pretty good for being gone 2 days and still recovering from a hurt eye. They said that all in all she did great in class.

I’m still going to stick close to the church next week, but I may get more adventurous and go to Starbucks down the street. The truth is that our house is only about 15 minutes from the church, so even if I came home and something happened, I would still be able to get there pretty quickly. I just like the assurance that I’m right there if she gets hurt.

Wednesday I interviewed someone to temporarily help out while Metti is gone. I can’t begin to explain how difficult it is to have a stranger come into your house for several hours a day, and take care of your most prized possession (Ella) and have everything you own right at their fingertips. I don’t think anyone can fully understand how vulnerable it makes you feel, unless they’ve been there. So I met with someone who was interested, but something about her just didn’t sit well. It was weird, and when I took her downstairs to meet Ella she stayed for a few minutes, then stood up and said, “Ok, thank you. I can see myself out.” Well, ok then. Joe and I decided that I’d call the agency and interview someone else. Well, today the agency called and apparently the woman I met with wasn’t interested anyway, so it all worked out. I’m supposed to talk with another candidate soon. Please pray that we find someone who I feel good about. This is just temporary while Metti is gone, but this person will still be taking care of Ella and I want to make sure I feel good about them being in our house.

Despite caring for a little girl who wasn’t feeling too hot, and spending a majority of our time cooped up in the house, the week at home was good. I’m especially glad that I was the one to care for Ella while she was sick, instead of sitting at work wondering if she was ok. And I’m so glad that I get to hang out with my mom while she’s here. I used to just leave her at the house with Metti while I went to work, and maybe I’d take 1 or 2 days off for us to do something. Now I get to actually spend time with her, which is a lot of fun. This afternoon Ella has planned for us to make chocolate chip cookies. We’ll see how that goes.

One of those days

I’m having one of those weeks where I really hate EB…I mean REALLY hate it! Poor Ella is having a rough time. For starters, her skin looks terrible. Every morning she wakes up with a new boo boo on her face. Most of them are on her chin, but the one this morning was on her forehead. Then yesterday she woke up with a terrible corneal abrasion. She kept her eyes closed all day and the only time she opened them was because she wanted to go to the airport to get GiGi and we told her she couldn’t go because she couldn’t open her eyes. She forced them open so she could see her GiGi.

Before I start into the last 2 days, let me say that I am SO glad that I was able to be here with Ella. The poor girl wasn’t feeling well at all, and I was more than thankful that I was here to cuddle with her help her feel better.

Yesterday Ella woke up at 8:00, went back to bed at 9. Woke up around 11:30, went back to bed around 12:30. Woke up at 3, went back to bed at 3:30, and woke up at 5. That’s a lot of sleeping for Ella! And when she was awake all she wanted was for me to rock with her. I kept giving her Tylenol and putting ointment on her eye, but those will only help so much. At least she slept a lot, which gave her eyes a lot of rest and time to heal.

Once we got home from the airport she was acting a lot better and seemed to be perking up. I was sure that with a good nights rest she would wake up this morning and be ready to go. Unfortunately, this morning once again she wouldn’t open her eyes. She didn’t sleep as much today, but she did lay and listen to the TV until about 11:30. Then suddenly, she perked up and was fine for most of the day. She and GiGi played, she drew pictures for GiGi and showed her how she can write her own name, we went for a tricycle ride and they played outside with chalk. Metti even came over and played for a few minutes. Unfortunately, when Ella went to sleep for her nap, something happened again and when she woke up she wouldn’t open her eyes. She was only awake for a couple of hours before going back to sleep.

Please continue to pray for Ella’s eyes, particularly her left eye. They both are really causing problems and it hurts me that she wants so bad to play with GiGi and just can’t. Also, due to her eyes hurting, Ella hasn’t eaten much the past couple of days. I’m not too worried yet, but if she doesn’t eat well tomorrow I may start to worry. We can’t have her losing weight…she’s too small as it is.

And as EB in all its terribleness would have it, this afternoon when she was feeling good and playing, she was leaning down to play with one of her toys, and she slipped, hitting her cheek on the toy and causing 2 big boo boos. The girl seriously looks like she’s been through battle.

It’s just not fair. It’s not fair that a sweet 3 year old can’t even play with her own toys without falling and getting a big boo boo. It’s not fair that she can’t play with her GiGi who flew all day and came over 1,500 miles to see her. It’s not fair that she had to skip her beloved church school 2 days in a row because her eyes hurt so bad she can’t open them. Stupid EB.