Tuesday, October 28, 2008

Weekend Update and more on EB Awareness Week

This Saturday started off with me participating in the Washington, DC diabetes walk. It was raining so Joe and Ella stayed home. It’s always weird to see colleagues outside of the office. No one is in a suit, no one even really has their hair fixed (I think we all were wearing ponytails) or make-up on, and no one talks about work. We just walk and talk. It was kind of nice and I got to meet several spouses, which is always good.

Saturday afternoon we spent a majority of our time inside since it was pouring rain. But early Saturday evening we did venture out and do some furniture shopping. On the main floor of our house we don’t have any furniture. That’s not completely true, we have a dining table in the formal eating area, and in the kitchen we have a card table (but it is a really nice wooden card table), and in the living room we have my life-size cardboard cut out of Elvis in the gold suit, two lawn chairs, and the new French doors that have yet to be installed. So we are in the process of looking for new furniture. Unfortunately we haven’t had a lot of luck so far. It took me several months to find the perfect couch and chair when I was single (this now is in our basement), so I will persevere and the perfect thing will show up.

Sunday morning we left bright and early to head to Charlottesville to see Sam and Nate’s baby dedication. Those boys are so cute! The dedication was so nice. You can read more about it Here. On the way home we stopped at a couple more furniture stores to check out the selection, but still left empty-handed. That was it for the weekend. Sunday night we just hung out at home and relaxed.

For National EB Awareness week, I want to open the floor to questions. You may not have any, or there may be questions that have been lingering in your head for a long time. Feel free to ask anything, EB related or not. You probably won’t ask a question we haven’t already been asked, so don’t be shy. You can either leave a question in the comments section of the blog, or if you want to remain anonymous you can email it to Ella.

Have a great week.

Friday, October 24, 2008

National EB Awareness Week

Tomorrow kicks off National Epidermolysis Bullosa Awareness Week. We wanted to take this opportunity to highlight the importance of understanding EB.

For those of you new to our blog, here’s a quick summary of EB and Ella. Ella has Recessive Dystrophic EB (RDEB), which means she has limited or no collagen VII. In layman’s terms, we all have 2 layers of skin, the epidermis, or top layer, and the dermis, the bottom later. Between the two layers we have a collagen VII protein that keeps the two layers connected. Ella doesn’t have that protein, so with any friction or pressure her two layers of skin separate and either the top layer comes off completely, or the two just separate and form a blister just like if you burned yourself. We keep her legs, arms and torso wrapped to heal current boo boos and to hopefully protect her from new ones. In Ella, this disease is inherited recessively, so in order for her to get it both Joe and I have to carry the gene.

Ella was born on June 21, 2007. We had never heard of EB until that day. When she was born she had what are called “full thickness wounds” (basically, she was missing skin) on her right foot and right knee, and on her left leg from the knee down. We were lucky because there was a neonatologist in the hospital who had seen EB before and was able to quickly diagnose her. He then had her sent to Children’s National Hospital in DC, where she spent the next 34 days. We were lucky there too because we had wonderful nurses who cared for Ella and a wound care nurse who had worked with EB kids before.

I assume that most of you had never heard of EB until you heard of Ella. That is not uncommon. We have met doctors and nurses who have been in the medical field for 30 years and have never heard of EB. This week is our opportunity to spread awareness. Thousands of children and adults face the pain associated with living with EB. These kids, like Ella, have the same heart any other child has. They want to run, climb trees, ride a bike, or roller skate just like their friends, but participating in these activities often causes more boo boos.

This week is also an opportunity to help patient advocacy and research organizations who support EB families. Shortly after Ella was born we contacted DebRA of America (Dystrophic Epidermolysis Bullosa Research Association). Within a few short days we received a big box of EB-friendly items (ie. handmade quilt, bath sponge, toy, medical supplies, etc.) As a new family just learning about this disease, it was so helpful to have this stuff that we knew would be helpful for Ella. Once Ella came home from the hospital, DebRA sent their New Family Advocate to our house. She brought Ella soft socks, a very soft sheet for her bed, cloth diapers, and showed us several items that other EB families use, many of which we have adopted for ourselves. She even helped us with a bandage change and gave us ideas for making things better for both us and Ella. Joe and I support this organization both personally and financially, because we have seen first-hand how helpful it is. www.debra.org

The EB Medical Research Foundation (EBMRF) is dedicated to supporting research for EB. The EBMRF is unique in that they pay no salaries. All work, including executive, legal, accounting, development and administrative, is done on a volunteer basis. The goal is to keep operating costs at less that 1% of incoming donations so that a full 99% of contributions can go directly to the research program. They have made great strides in research for RDEB and we are hopeful that in a few years Ella will be able to benefit from the work they are doing. The unfortunate reality for kids with RDEB, is that most do not make it past the age of 30. With this organization there will one day be a cure for EB so that no other baby has to endure what Ella goes through, and so that Ella will live to be a wife, mother, grandmother and even a great-grandmother. www.ebkids.org

We are well aware of the economic situation we are currently in (hey, we work in politics), but if you are looking for a magnificent organization to support, or two, we ask that you check out these. More importantly, we ask that you take this week to educate just 1 person about EB, and if you want, you can tell them all about Ella!

Wednesday, October 22, 2008

Poor Stinkerella

We have a sick little girl at home. She caught a cold and looks and acts like she feels miserable. Runny nose, watery eyes, the whole gamut. For the last 3 nights she has woken up in the middle of the night inconsolable. She cries for about 40 minutes then after the Tylenol kicks in she will finally go back to sleep. The only thing we can think of is that she has a sore throat. And this morning when she woke up she would take one or two drinks from her bottle, then start crying. We tried yogurt, but she cried with that too and would stick her fingers in her mouth. The only thing she will eat is Cream of Wheat and chicken noodle soup.

Hopefully this will pass quickly. And hopefully it’s just a cold and not some throat infection thing (ie. tonsillitis, strep throat, etc.). If she isn’t feeling better tomorrow we’re going to the doctor.

That’s all the news in the Murray house. We have another big weekend planned, so I hope Ella gets over this before the weekend comes.

Monday, October 20, 2008

Charm City

Living on the east coast is different than living in Wyoming on so many levels. One of them is that in Wyoming you have to drive several hours to get anywhere. Denver, the closest “big” city to my hometown, is 4 ½ hours away. It is nothing to drive for 2-3 hours, or even longer, and not pass a gas station. So one of the advantages of living on the east coast is that it’s easy to get someplace new within just a few hours. Joe and I LOVE taking weekend trips. We find somewhere new within just a couple of hours of home, and we go, spend the night, then come home. It’s a lot of fun and has given us the opportunity to see a lot of quaint towns. Since neither of us had spent any time in Baltimore, we decided that now was the time. Ella is old enough to actually enjoy the aquarium, the weather is cool enough to get her out, and we actually had the time.

So Saturday morning we headed up to spend some time in Charm City. Our first stop was the aquarium. We had 11:30 tickets, and were scheduled to see the dolphin show at 1:30. After a quick lunch we started on a short tour of the big fish tanks. Since they have a lot of kids visit, everything was just the perfect height for Ella. She could stand on the ground right next to the glass and watch all of the fishies. She absolutely loved it! She would try and grab the fish as they would swim by and would get so excited when they swam by her face. We almost missed the dolphin show because Ella would cry every time we took her away from a tank. We did make it on time and actually got pretty good seats. Joe thought we were in luck with some seats in the second row, until he noticed the sign that said “Splash Zone.” Needless to say we didn’t sit there. Throughout the entire show Ella kept saying “fishy.”

We also had tickets for the 4-D theatre. There were warnings all around not to take in children who would startle easily, but we figured we’d try anyway. Lucky for us Ella was getting antsy before the show even started, so Joe took her out while I stayed in and watched. Within the first 10 minutes, about 15 kids were taken out screaming. The whole 4-D experience is basically a 3-D movie, with some other effects thrown in for good measure. I got water sprayed in my face about 6 times, and wind blown on me almost as often. They also had bubbles, air that swirled around our feet, vibrating chairs and some pole thing that jabs you in the back. Sounds fun doesn’t it! Of course when any of these things would happen the room would erupt with screams, which just added to the kids getting scared. The show was only 20 minutes long, and after the first 5 minutes I was so glad that Joe took Ella out before it even started. It’s not what I would call “kid friendly.”

We finished up the day with a visit to the Frog display, then up to the Rain Forest, and down through basically the center of a ginormous aquarium with sharks any everything. We even saw a couple of scuba divers. Once again, Ella loved it!

Saturday night we had dinner with some of Joe’s friends from NJ who have moved to Baltimore. They have 2 daughters, a 2 ½ year old and a 10 month old, and they have more than enough Elmo gear to satisfy our Elmo crazed child. They have one that is Elmo holding a pizza and Elmo and the pizza sing a song together. She loved it and wanted it played over and over again. It was a nice dinner reconnecting with Jason and Jennifer.

Sunday we headed out right after breakfast and Joe, being the wonderful husband that he is, let us stop at Ikea. We mainly checked out their furniture, and just bought a couple of little things we needed, power strips, pitcher, a new kitchen rug, etc. Of course we had to have a hot dog and cinnamon roll before we left. Oddly enough, Ella liked the hot dog better than the cinnamon roll. Whose child is she?

We made it home in enough time for Joe to shower and head back out to the Redskins game. Ella took a long nap then she and I went grocery shopping. Of course she had to comment on everything I bought. If it was something she recognized like carrots or her yogurt, then she would say “yummy” over and over again. If it was round then it was automatically a ball, and if someone passed us with a baby, or if she saw a picture of a baby, then she would start repeating “baby.” I did get her some Elmo vegetable soup, so she repeated that for a while too. She was a great shopping buddy.

Now its back to the old grind. I hope you all have a great week.

Friday, October 17, 2008

Hound Dog

Well, I just got back from Elvis Fest and I have to say, it did not disappoint! First, let me give a quick shout out to my table...table 19! Now, on to the evening.

I was running a bit late because I made Joe drive all the way to Leesburg to pick up a bookshelf for Ella's room (it was too cute to pass up...more on that in a later post). Luckily my date, Beck, was also running late. I arrived at the church about 2 minutes before she did and took one look at who was walking through the door and knew that we were going to be in a crowd unlike the ones we typically run in. Beck and I were the youngest by probably about 20 years. When we went inside we did find 3 others around our age, so we all sat together (Hello table 19).

Beck and I were also the most committed to Elvis night. I was wearing my Elvis t-shirt (I can count on one hand the number of times I've worn it...there just aren't a lot of occasions to wear an Elvis t-shirt and not get stared at) and I had one of my Elvis purses, and Beck was wearing her Elvis sunglasses (she got a lot of compliments on them).

The dinner was fabulous! BBQ brisket, collard greens, baked beans, homemade macaroni and cheese, cornbread, coleslaw and finished up with yummy banana pudding. They did have several trivia questions, and I knew most of them but not all. They also had a costume contest and while Beck and I didn't win, we definitely held our own.

The evening entertainment was Elvis Impersonator, Michael Hoover. Now, since I am a very loyal fan of the one and true Elvis, I never really know how to respond to impersonators. They are entertaining, and I usually have a good time, but they all...no matter how good...are just a bit cheesy to me. This is not meant to be an offense, and to really think about it, Elvis himself was a bit on the cheesy side, especially in his later years (hello white jumpsuit with a rhinestone eagle and a matching cape). What was hysterical was that a girl at our table, Robin, had seen Michael perform before and she was very upset that at his last performance he had not given her a scarf. In fact, she mentioned it several times throughout the night. Well, he made up for it this time. She got a scarf AND a big kiss on the cheek. He was very entertaining, cheesiness and all, and I would gladly go see him again.

It was a fun night out. Joe and Ella stayed home and had daddy-daughter time. By the time I got home to do boo boos the poor girl was exhausted (she's usually in bed asleep by 9:30 and we didn't even start boo boos until 9:30). She whined through her entire bath, and as soon as she was on the changing table she was out! She woke up long enough for me to brush her teeth, give her doggie and lay her in bed.

Tomorrow morning we leave for Baltimore. I'm sure we'll have a lot to report from the weekend. It's going to be a fun time!

Thursday, October 16, 2008

Gearing up for the weekend

There are a few new videos in the picture section. My favorite one is of her singing the Itsy Bitsy Spider. She learned it from Elmo, of course, and her favorite part is “out came the sun” when she can put her hands on her face like the sun. I want to teach her more kids songs with motions but for some reason I can't seem to remember any other than I'm a Little Teapot. Any suggestions? Another of the videos is of Ella playing with her baseball and bat toy. Of course Joe is very proud of her hand eye coordination and how she already knows that the bat is used to hit the ball. I just hope that she doesn’t figure out that the bat can be used to hit other things too.

Tomorrow night Beck and I have a very special date. We are going to Elvis Fest at our church! Needless to say, I saw that the church was having this event and knew right away that I was going. Joe graciously offered to stay home and take care of Ella so that I could go…I think it was more his way of getting out of going. So Beck agreed to be my date and go with me. We may be the youngest ones there, but I don’t really care. I just need to get out my Elvis t-shirt and brush up on my Elvis knowledge for the trivia game, then I’ll be good to go. I’m so glad because in this last move the thought of getting rid of my Elvis shirt actually crossed my mind. At the last minute I decided that I would keep it because you never know when something like that will come in handy. Man, that was a close one! And thank heavens Beck has a cool job and got to go to Graceland with the Prime Minister of Japan who gave her some Elvis sunglasses!

This weekend Joe has planned a short family get-away to the Baltimore Inner Harbor. We’ve been talking about going up there since we got married, so he decided that this weekend was the perfect time. He even got us tickets to go to the Aquarium and see the dolphin show. Now that the weather is cooling off and the humidity is gone, it’s much more pleasant to get Ella out and do fun things like this. The summer is brutal for her, so we spend most of our time inside. Kids are great, you always have the perfect excuse to do child-like things! Hopefully in the next few weeks we’ll be able to go to a pumpkin patch and get some yummy apple cider!

Monday, October 13, 2008

A Very Busy Weekend

This weekend was chocked full of fun! And Ella seemed to love every minute of it. She had gotten her MMR shot at her last doctor visit, and had been suffering from a fever for several days because of it (apparently this is normal). The fever had caused her to be fussy and lose her appetite, so needless to say, last week Ella was not in the best of moods. Saturday her fever finally went away so we took her to the Seminary Valley Fall Festival. It wasn’t one of these huge festivals that you see in some towns, but it was still great to get out. They had a pony ride with miniature horses (sorry Beck), but we didn’t bother standing in line for Ella to ride one. We know that the next time she’s in Texas her Uncle John and Aunt Nancy will let her ride as long as she wants to! One of the privileges of having a family farm is that all of these things that are novelties to city-folk, are available at your fingertips…well, as long as you’re in Texas. Anyway, we did sit and watch the horses for a long time and our sweet baby girl kept pointing and saying “Moo.” In all of her animal pictures, the cows have spots and the horses are brown. So when she saw a large spotted animal, who can blame her for thinking it was a cow? We had a lot of fun at the festival and Ella really enjoyed her first taste of Kettle Corn.

Saturday night Metti came over and watched Ella so Joe and I could go to a wedding. It was nice to get out and have a date. The wedding was beautiful and the food was even better! Not that we went to the wedding JUST for the food, but it was definitely an added perk.

Sunday morning we drove up to MD to meet Amelia (Millie) Benson. She is a whole 4 weeks old and is so so sweet. Ella learned a new word while we were there…Baby. She looked at Millie for a little bit, but was much more interested in Roux Benson, the family dog. And Roux was very accommodating. She would lay there while Ella just looked at her, poked her and laughed. We are going to have to cave in at some point and get Ella dog. For now, our friends dogs will have to do.

Sunday night we went to dinner with some of Joe’s friends from law school. We went to Hard Times for yummy chili (I had Bubba Chili…cornbread topped with chili, cheese, tomatoes and sour cream). Of course Ella was a hit. Sometimes I think she knows that she’s cute. My mom’s BFF Gretchen talks about how little girls know when they are dressed up because they act differently. Well, Ella is only 15 months old, but yesterday she was wearing a cute skirt and shirt with tights and little brown shoes and her hair was in pigtails. She looked SO cute, and I swear by the way she was acting that she knew it! She was smiling at everyone and even flirted with one of the guys at dinner. It made me want to get her more cute dresses!

Thursday, October 9, 2008

Ella's Words

Mo – Elmo...of course
Wee – this either means whee (like in the song “The mouse ran up the clock…whee”) or three (when we’re playing and on the count of three we throw her on the bed).
Yummy – she says this when she’s hungry. Usually she is also pointing at the refrigerator
Thank you – believe it or not she knows to say this when someone gives her something, although she also says it when she gives something to us.
Uh oh
Meow – the impressive thing is that she knows what is a cat and she knows what is a dog, and she knows what isn’t either of these animals because she won’t call it anything.
What’s that? – This is code for “Let me see that.”
Flicker – she doesn’t say this very often, but she has said it more than once so we’re going to count it
Done – said while doing the baby sign language for ‘all done’
Bird – she only says this when she sees Big Bird. The term doesn’t apply to any other bird

Ella also has a few words that we don’t really understand. When she wants a bottle she says “guh guh.” The only thing I can figure is that she is trying to say “drink” and just has the last part figured out. She also is always saying “dubbie.” We have no idea who or what dubbie is. There has been the idea that dubbie is really Metti, but there isn’t any confirmation on that.

Thanks to everyone for your thoughts on Ella’s Halloween costume. The vote is still going on so keep voting.

Sunday, October 5, 2008

Ella's Halloween costume

Ok everyone out there in blogland. We need your help. We are trying to decide on what Ella should be for Halloween. So, please cast your vote on the right for your favorite costume. Our disclaimer is that while we will take into consideration the winner, Ella and her parents have the ability to make the ultimate decision. That said, the polls open now.

Wednesday, October 1, 2008

Joella has an Email Address

Katie and I decided to provide a link to our dear little gal's email address in case you are interested in sending us a message for us to read to Ella, or you would like to send us one as well.

The link for her email address is on the right-hand side, or it is listed below: