Sunday, October 31, 2010

Happy Halloween!

Well, Ella had a successful 2010 Halloween. For weeks she has been talking about how she’s going to be a silly clown (siwy cwown…in Ella speak). GiGi made Ella (and my twin nephews who you can see here) adorable clown costumes for Halloween, and Ella was very excited to wear it. And Ella was very clear that she was a silly clown, NOT a scary clown. Although she did want Joe to be a “Scaaaary Scarecrow.”

This afternoon Ella and Joe carved her pumpkin. She was happy being the observer and didn’t want to touch it at all. The entire time she kept saying, “It’s yucky!” I have to agree, especially after my wonderful husband requested toasted pumpkin seeds, which meant I sifted through all the grossness to get them nice and clean so I could toast them. I can completely confirm that pumpkin guts are in fact “yucky.”

Unfortunately, Ella chose to watch her Barney Halloween video instead of nap, which resulted in a minor meltdown that almost prevented us from going trick or treating. I decided to just change her bandages without a bath (I rarely do this, but today we really didn’t have the time for the whole bath and bandage change). So as I was finishing up her last hand, Ella decided she had had enough, thus crying ensued. Oh, it was a mess. She was tired, not feeling so hot (she has a little cold and her advil had worn off), and all she wanted was her monkey jammies. I know many of you are thinking that her bandage change is what caused her to be so upset. No, that was just the straw that broke the camels back. She skipped her nap, and today the bandages were the trigger that set her off. It could have just as easily been that she wanted to wear a pink bow instead of the purple one. Bandages are second nature around here and most days we finish her bandages and go about our day like anyone else. The meltdown didn’t have anything to do with the bandages, it simply happened because she was tired.

Anyway, one of the nice things about having a 3 year old is that she actually understands a lot. So I told her that if she wanted to go trick or treating then she needed to wear her silly clown costume, but if she put on her monkey jammies then she couldn’t go trick or treating. She completely understood. I left her without clothes (just bandages and a onesie) and we went into her room to rockie and read a book. By the time I finished the book (about Curious George going to a Halloween party) Ella was fine and very excited to get on her clown costume. I knew she’d be fine with the purple shirt and overalls, but I wasn’t too sure how she’d respond to the ruffle around the neck. As soon as I told her it was a “clown necklace” she was more than happy to put it on. She was also willing to wear her clown nose, but it kept falling off. Her cute little button nose wasn’t enough to keep the red clown nose in place.

Now the waiting game began. I got Ella all ready and tried to let her watch TV but all she kept saying was how she wanted to go trick or treating. So we went downstairs and I got her shoes on. She sat on the bottom step for about 30 minutes waiting for it to get dark so we could go. We moved outside so I could see if there were any other kids out that early (not in our neighborhood) and she sat on the front stoop for another 20 minutes. We came back inside and the poor child was just staring out the window. She was ready to get out there and get some candy! As soon as I saw one family out I grabbed Ella and off we went.

She did a great job! I knocked on the doors and she would patiently stand and wait for the person to come to the door. She would say “Trick or Treat,” then reach for the candy. She didn’t quite get that they put the candy in the bucket for you. She wanted to grab it from their hands and put it in herself. As we left she told everyone thank you. We just visited the houses on our street, and by the time we got to the last one Ella was ready to go home.

As soon as we walked in the door she said, “Mommy, can you take off my clown costume. I just want to wear my jammies and eat candy!” As soon as I got her changed she sat at the table and started digging through her bucket. Yes, I let her eat 4 pieces. Luckily she also had some chicken nuggets and squash, so it was a fairly well rounded meal.

All in all it was a successful trick or treating experience. In spite of all the sugar, Ella went to bed quickly. She was one exhausted clown!

Wednesday, October 27, 2010

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!

Friday, October 22, 2010

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.

Wednesday, October 20, 2010


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.


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.