Monday, May 17, 2010

Fun Times in Sunday School

Yesterday was my day to go to Sunday School with Ella. We’ve been trying to take her each week and one of us goes with her while the other goes to church. We used to just take her to the service with us, but now she’s just too talkative (what? My daughter?). Besides, the Sunday School rooms are the same rooms as the preschool rooms, so I thought it would be good to get her accustomed to the area. Each week we take her to the classroom and each week we spend the first 15-20 minutes holding her while she stresses about the other kids, teachers and all around people she doesn’t know. After the initial clinginess she’s fine, but when you’re only there for an hour, 15-20 minutes is a large chunk. But this week things were different.

Ella and I walked into the classroom and I put her down, and she was fine. Not one tear was shed. Not one “Mommy hold me.” Nothing! She just walked right over to where the other kids were playing with the play kitchen and play food and started playing. She was completely fine! I don’t know if it was because out of the entire class, including teachers, there was just one little boy…I don’t know if it’s because the teachers this week somehow seemed friendlier than the other teachers…I don’t know if she’s just warming up to it…I don’t know if she just decided that today she would be fine…I just don’t know. All I know is that it was a good day. And Ella even let this girl, Kylie (she’s a teenager and has be-friended Ella) dress her up as a Bumble Bee. How cute is this?

Later she decided that she wanted to be a firefighter.

After the service the church was having their annual picnic…if you can call eating catered BBQ in the Faith Activities Center a picnic. We decided not to get tickets because we were convinced that Ella would freak out with all the moon bounces (yes, there were multiple ones) and all the kids running around. Oh little did we know that Ella was going to be in an especially social mood that day and rather than be scared of the games, she didn’t want to leave them. She stood at the entrance of the moon bounce and just watched all the kids (there was no way she was going in there). And when we went to leave she was less than happy about it.

Luckily we were going home to meet Aunt Jenny and Cousin Megan and her friend Amy. Megan and Amy have a school project that they are doing on the new health reform law and they asked Joe to be their expert interview. So, they drove all the way down from NJ to video him. They brought yummy NJ subs (oh so good) and we had a great time catching up. Ella put on a full show for them, complete with motions to “Wheels on the Bus” and several other songs in her repertoire. We even brought them into DC to get their picture next to the Capitol. By that time Ella was completely worn out and fell asleep in the car on the way. It was great seeing them, even if it was just for a few hours.

I liked having a more social definitely made things easier. I'm keeping my fingers crossed that next Sunday is the same way.

Sunday, May 9, 2010

Just because I thought you'd be interested

I've been thinking about doing this post for awhile, but just haven't done it. Now seems like the right time. There's really no reason for doing it, other than I think you might be interested. I know a lot of you pray for Ella and words can't express how much we appreciate it! So I feel like you should know a bit more about what you're praying for.

Let me also say from the very start that Joe and I are extremely lucky and have very little out of pocket costs in managing Ella's disease. That said, know that this is not a post that is looking for anything...we don't need your help to pay for Ella's supplies. This is merely a post to share information that I think you might find interesting. That's it.

We receive a box like this at the beginning of every month. I put it in front of our front door so that you could get an idea of its size. See, it pretty much covers the entire width of the door. I don't know the exact dimensions, but it's big. I can't lift it. And it's too big to haul upstairs where Ella's supplies are, so we just leave it down next to the door and I carry the supplies upstairs. Then when it's empty we either give it to someone who is moving, or recycle it. The medical supply company always puts those red stars on the box...I'm not sure why, but I always know who it's from.

Here's what's inside. Yep, it's filled to the top. We're lucky because Ella only gets one of the boxes a month. There are a lot of kids that get 2, and I'm sure there are some kids that get even more than that.
When we were looking for a house, one of the big things that sold us on our place is that it has a separate area where we could do Ella's bandages. It's away from her room (we want her bedroom to be a comforting place where she doesn't have to worry about getting her boo boos done every time we're in there.) Her bandage area is the perfect little nook. Right next to the master bathroom in case we need water or to wash our hands, and right next to the biggest, best closet EVER!!! Most people would look at this closet and think about all the clothes they could pile in there. Not me, I knew instantly that it would be Ella's supply closet. That way I could keep a good stock of supplies on hand, and still have them tucked out of the way. I realize that people get uncomfortable with all the bandages being around. It's our life, so it doesn't bother us at all. But with people who aren't used to it, I don't want them coming into a house that has random medical supplies sitting out. So here's Ella's supply closet fully stocked. I love when it's fully stocked. It's the same feeling you get after going to the grocery store and you know you have all the food you need for the next few weeks. It's like snowmageddon could hit and it would be ok because you just stocked up on milk and water. That's what a full supply closet feels like.

Here are the bottom two shelves. This is mainly chux (underpads) and larger boxes. The second to bottom shelf is gauze...lots and lots of gauze. Any size you could possibly need. Roll or square...2", 4", 1" and I think we even have some 3" in there. Gauze and Tubifast.

The next two shelves are the supplies we use most often, that way if we're in the middle of a bandage change and we run out of something, I can just run to the closet and grab it. The upper of the two middle shelves also contains a lot of odds and ends that we don't use on a regular basis, but like to keep on hand. And that big pink bottle with the purple lid is sunscreen. I'm not really sure what it's doing in there.

The top two shelves are where we keep the extras. We can't store all that we'll need on the 2 main shelves, so when we start to run out we just open up one of these babies and we're back in business.
So there you have it. Our supply closet. Yes, there is a mirror on the door that was put there by the previous owners. Ella loves it and often when I'm putting things away or preparing for a bandage change, she'll look at herself in the mirror and perform for herself. Luckily she's out-grown giving herself kisses. I'll tell ya, that girl thinks she's pretty cute!

And just as another FYI, on average Ella's medical supplies cost around $5,000 a month. Yep, you read that right. They have been as high as around $8,000, and as low as just a couple thousand, but typically we're right around $5,000.

So there you have it. Now you know a bit more information about EB and Ella. People ask all the time if the bandages bother her. No. She doesn't know life without them. In fact, she won't put her feet on the floor when her legs are unwrapped. The funniest part is that after she gets her boo boos done and the gauze is still pretty tight, she walks straight-legged. She won't bend her knees for awhile, then once things loosen up she's good to go.

Any questions?

Thursday, May 6, 2010

Me and my chicken

I have been attending a women's mentoring group through our church. It's called Apples of Gold...I'll get into the details of that later. For now, I'll give the brief description that Apples of Gold is all about hospitality. We have learned to cook various dishes, set a table the proper way, and several other things. After each week when we learn something new, my goal is to do it at some point that week. For example, one week we learned how to make this beef roast. That week I made it for Joe. A couple of weeks ago we learned how to make biscuits from scratch...I made them. All of those things were great and I was glad to learn how to do them, but none of them were what I would consider "life altering." One thing, however, was. One week they showed us how to take a whole chicken and cut it up to make chicken stock. This sounds simple, but being a girl who lives in the city, I just buy my chicken stock at the grocery store and my chicken breast already cut up. The concept of buying a whole chicken and doing something with it was completely out of my comfort zone. However, in an effort to fully take advantage of all the class has to offer, I decided that I WOULD cut up a whole chicken...oh yes.

I documented the process. Here you go. Meet my chicken.

I got her at Safeway. I don't know how much she weighed and honestly I didn't care. On our trip to Ikea I picked up the handy poultry scissors you see to the left, and on the right I had my trusty knife. Yes, I know you're not supposed to cut up meat on a wooden cutting board, but I don't have a plastic one, so I just covered the one I had in plastic wrap and made sure not to cut through it.

Step one: Remove the guts...ok, I know they aren't officially called the guts, but that's what they are! I would like to take this moment to personally thank the person that puts the guts in a little plastic bag. THANK YOU! Because of you I didn't have to actually touch the guts, I just had to touch the corner of the bag and gently toss them in the garbage.

And this was my face as I was getting rid of the guts. I'm not going to tell you what my stomach was didn't feel good. (I thought mom's were supposed to have stomachs of steel!)

Step two: Cut the skin and meat around the legs, then twist the hip bone until it breaks free. I'm not a fan of the twisting. I was really glad when that part was over. It's gross enough to hear the bone break, but to actually FEEL it in my hands was really disgusting.

You do the same thing with the wings. On one hand the wings were easier because they were smaller. On the other hand, they were more difficult...because they were smaller. Weird, I know. I can't explain it.

Step three: separate the breast from the back, then cut the breast in half. Sorry I don't have pictures of this. Joe was off with Ella and I haven't yet learned how to take a picture with my toes, so you'll just have to trust me that I did it. This was where the poultry scissors came in very handy.

Step four: Put the chicken pieces in a pot and cover with water. I added carrots, celery, bay leaves and peppercorns for flavor. Doesn't this look good? Then, what we learned was that instead of boiling the chicken, you simmer the chicken. I don't really remember why...something about the fat floating to the top or something like that.

So I simmered my chicken and the house smelled absolutely amazing! I loved it and Joe kept asking me if I would make him some soup. I could have with all the awesome chicken stock I got, but I didn't. It's spring...soup is a winter food.

Here is a picture of all the stock we got from that one chicken. I put it in these containers and froze it. The thing I'm most excited about is that this is sodium free. If I had put salt in while I was cooking it, then of course there'd be sodium in it, but I chose to leave it out so that I could add salt later. The thing that worries me the most about buying soup and chicken stock in the grocery store is that it's full of sodium. And even the kind with less sodium is still crazy! This makes me feel like I'm making a real effort at keeping our sodium down.

And here is a picture of the chicken meat. I used this to make chicken of our favorites.
So there you have it, my chicken cutting experience. I don't think I'll do this often, but I will do it again sometime, especially when I need more chicken stock.

After the class each week I always call my mom and tell her what we learned. When I told her about us learning how to cut up a chicken, she informed me that the first time she cut up a chicken she had to go out to the coop, find the chicken, kill it, pluck it, cut it up, fry it and they ate it for dinner that night. Boy am I glad I live in the city!

Monday, May 3, 2010

Happy Birthday to Me!

Yes, this weekend was my birthday…I turned 23…I wish! Not really, I don’t have a problem with my age, and I can pretty much guarantee that I wouldn't want to be 23 again. I actually turned 33…ah yes, I’m well into my 30’s now. With the help of my awesome husband, I had a terrific birthday weekend!

A couple of weeks ago Joe asked me what I wanted to do on my birthday weekend. I don’t think he was expecting the response he got…I wanted to go to Ikea. Several months ago I put in my birthday present request of new bedding, so since then I have been looking high and low for just the perfect bedding. It’s not easy finding just the right thing.

Perspectives change A LOT after children enter the scene. When we got married we registered for a pure white duvet cover with blue sheets. I loved it (and honestly, still do). It was on the pricey side, but I loved the crispness of the white bed spread and the colored sheets allowed me to change colors if I wanted to (although I never did) and accent with fun pillows. Well, once Ella entered the world our duvet cover quickly went from white, to kind of grungy, to mostly white with a lot of random stains all over it. At first it was easy…there’s a big chocolate stain on this side, just flip it over. Now, both sides of the duvet are stained from cookies, chocolate, chapstick, blood and there’s even a giant spot that looks like Ella went “wee wee” on our bed (although I’m 99% sure that didn’t happen). Needless to say, our once beautiful white duvet cover is now disgusting! So I wanted a new duvet cover, but I didn’t want to pay a lot. Ella’s only 2 years old (almost 3) and I can guarantee that at some point we will get yet another stain on our bedspread, so I didn’t want to spend a lot of money on something that was going to get stained. The other issue here is that when Joe and I got married I promised him that I wouldn’t make him sleep under pink or flowers. Unfortunately, I couldn’t find a bedspread that I liked that wasn’t flowery. I secretly had my heart set on toile, but that is flowers and I had made a promise.

All this to say that I decided the best place to get our new duvet cover was at Ikea…and I knew I would find some other things there that I couldn’t live without. We drove up late Sat. morning and I had so much fun walking around and picking out things we needed. Ella and Joe had fun too, although Joe may not admit it. We found the perfect bedding and Joe said that he could get past the flowers as long as they weren’t pink (what a great husband). So here it is, our new bedding. (Sorry the picture is a bit was taken with my blackberry phone)

Several weeks ago Joe had informed me that he and I were going to have a date for my birthday. Metti was going to watch Ella so we could go to our favorite restaurant (Hana Tokyo) alone. Ella loves Hana, so I thought it was a bit odd, but figured he wanted to give us a special treat. In getting ready to go out there were a couple of things that were odd to me. First, Joe took a shower before we left. Second, he wouldn’t wear jeans. This was Hana, it’s definitely a “jeans are acceptable” establishment. Third, he wore this purple shirt that he has (and I’m not a fan of…sorry) and kept saying “I hope we don’t see any of our friends tonight.” Still, I didn’t really know that anything was going on…until we got to the restaurant. We got there and Joe was staring at the back room and got a little smirk on his face. My first thought…he’s up to something. Then the waitress came to seat us and she totally blew Joe’s cover. Side note: Since I visit Hana on a monthly basis, I’ve had this waitress several times before and she’s very frustrating to deal with. She’s completely clueless. On numerous occasions when I’ve been there with my colleagues, we’ve had to repeat our drink orders several times before she gets it right. So, here’s the conversation that took place:

Waitress: How many?

Joe: We have a reservation for Murray.

Waitress: How many? Looking at Joe like she didn’t understand what he just said.

Joe: We have a reservation for Murray…it should be in your book.

Waitress goes to look at the book: Murray for 3?

Joe, looking confused: Yes…this is everyone. At this point I assumed that Beck was going to meet us there.

Then the waitress proceeds to try and seat us at a regular grill (this is Hibachi, so they have giant tables with grills in the middle). Joe then has to spell it out for the clueless waitress that he has reserved the back room. She then announces, “Oh, you’re with the big party in the back room?” So Joe looked at me and smiled and I said, “What do you have up your sleeve?” We went to the back room and it was full of wonderful friends that I love with all my heart! It was so great to celebrate with everyone and to have a nice night out (without kids!). Of course we all stuffed our faces, then right as I was finishing up my rice the waitress came out with a HUGE birthday cake! What’s a girl to do? So, I had a big piece…with extra frosting.

Sunday was my real birthday, so we celebrated by opening presents in the morning, going to church, and having another awesome friend (Beck) over for dinner (She couldn’t come to my birthday party due to the fact that she’s really important and HAD to attend the White House Correspondents Dinner. Since when is the President more important than my birthday party?). It was a wonderful weekend and I couldn’t be more blessed. I have the most incredible family and friends that a girl could ask for!