Our sweet baby girl was born with a rare skin disease called Epidermolysis Bullosa. On the day she was born our lives changed forever. Through her life God has shown us his power, comfort and healing hand. We are blessed to be Ella's parents and can't wait to see what God has in store for her life.
…You start every conversation with news about the weather. Well, I guess that means I’m officially old because this will be an entire post about the weather.
It’s hot…really hot. The kind of hot that makes you keep your blinds shut all day just so the sun won’t fry the inside of your house. The kind of hot that makes you plan meals that don't involve using your oven. You know what I'm talking about. And poor Ella is suffering because of it. We have as few layers on her as possible, but she is still having a lot of skin breakdown. I really hope that once it gets warm and stays warm, that her skin will balance out. Now that she’s a big 22 month old, she knows about outside and she loves being outside. We try to keep her in the cool basement, but the conversation usually goes something like this.
Me: Do you mean up? (she gets up and down confused)
Ella: Ok, Up. (so I pick her up)
Me: You want to go upstairs?
Ella: Ok, upstairs! (so we go upstairs)
Me: No Ella, we can’t go outside. It’s too hot. (and Ella bursts into tears and starts rambling on about outside, pretty flowers, and the slide)
This is going to make for a long summer. And the worst part is that on DC standards...this isn't hot.
On another, completely non-weather related note, yesterday was GiGi's birthday. I won't say how old she is, but we do hope she had the happiest birthday ever!
The weather finally looks to be warming up for more than a day. It’s supposed to be in the 80’s all weekend! Too bad Joe will be cooped up in the house studying while Ella and I are out enjoying the nice weather. Perhaps I’ll make a lunch that we can enjoy at our new patio table! Or maybe we’ll go to the park and have a picnic. Oh, the possibilities are endless!!! The park is much more enjoyable now that Ella has fully grasped the concept of the slide. We’re still working on the swing, but she’s completely sold on the slide.
Joe is almost done with his semester. Wednesday night was his last class, so now it’s just preparation for his exams. I will take this opportunity to once again brag on my husband who, last week, had one of his professors compliment him on how well he was doing in the class and that it was evident that he really understands the subject. Way to go Joe!!!
Last night we went to Savannah’s house for dinner. Ella was wearing one of her Elmo shirts. Basically it’s just a red t-shirt with an Elmo face on it. And of course she had the matching Elmo hair band in. Savannah kept calling for Ella to sit down and play ball with her, but Ella was much more interested in petting Dorsey, the dog. Finally Savannah yelled, Elmo…Elmo…Elmo…and pointed to the floor for Ella to sit and play with her. It was hysterical. Then later Savannah walked over to Ella and pointed at her hair and looked at her mom, as if to motion “Mom, look, she has Elmo in her hair!” So cute!
That’s really about it on the Murray front. We’re just trucking along one day at a time. Have a great weekend!
Despite the pouring rain we are having today, this weekend was beautiful! Friday night we even went and bought a new patio table for our backyard. We look forward to enjoying many meals out there. Next on the list for the backyard is a swing set! Now that will be fun!
Saturday Dancerella and I spent the morning running errands. I had a lot of places to go and I knew that Ella would quickly lose interest. Thank heavens for Smarties! Ella ate 2 tubes of them while we were out. Saturday night we went to the wedding of my former co-worker, Erin, to Don. It was a beautiful ceremony and Erin looked gorgeous! I’m a total sap at weddings. I can’t help it! Even if I have no idea who the people are, I always end up shedding a tear. Then again, I’m a crier in general. Every week I bawl through the Biggest Loser and Extreme Makeover: Home Edition. I tell people that crying is my spiritual gift. Anyway, the wedding was beautiful and they had their reception at the Mount Vernon Inn…you know, George Washington’s house. The food was incredible, and in true Wyoming girl fashion, I had a filet mignon.
Sunday afternoon we decided it was time to tackle our yard. Last week I got some new gardening tools at Target...they're pink and I was eager to put them to good use. We worked on the flower box in the front to prepare it for flowers and hopefully next weekend I’ll get the flowers planted. We also worked on the backyard mowing the lawn and pulling up weeds and cleaning off the patio. Our yard is ready for the summer and we look forward to many cookouts back there. The good news is that not only is our yard cleaned up, but I got over 12,000 steps on my pedometer!
I hope you all had a wonderful Easter and remembered who died for us and rose from the grave.
Grammy Janet arrived Thursday night and is staying with us until Wednesday. She has taught Ella a new choo choo game, which provides hours of enjoyment for Ella and gives Grammy the opportunity to burn off some of her Easter candy. Basically Ella runs around our house and Grammy comes after her saying “Chuga chuga choo choo!” In case you were wondering, to a 2 year old this is a lot of fun.
The Easter Bunny did make a stop at the Murray house. Ella got a Mr. Potato Head. She liked it, but her favorite part is his glasses. She carried them in the car and to church, and as soon as we got home she was asking for “glasses” again. She also got this little Easter Egg light that spins around when you push a button. Ella is fascinated with Joe’s book light and the light I use when we change her bandages, so I knew she would love this…and I was right. The Easter Bunny also knew that Ella is a girl that can’t have too many hair things, so she got 2 new bows, new barrettes and some Sesame Street hair ties. And in lieu of candy Ella got some yummy fruit strips. Joe got candy in special sports themed Easter Eggs, a Tide To Go pen, and a special stone to clean his grill. Grammy got candy and a special present that the Easter Bunny saw and just knew Grammy needed. The Easter Bunny was a bit more practical when buying gifts for mommy…I got new black shoes and black dress socks. Although the “other” Easter Bunny did surprise me with some beautiful flowers to plant in our yard! I can’t wait until we have a Saturday nice enough to get out and plant them.
Of course we went to church and got our picture taken in front of the flower cross. Every year it is so beautiful and everyone looks forward to getting a family picture. The pictures look like it was a beautiful day, but it was really windy and cold. After church we went to lunch, but in order to avoid the big crowds we went to a diner down the street from our house. Joe and Grammy Janet said that this was in honor of NJ, the diner capitol. I had incredible French toast! My mouth is watering just thinking about it.
Sunday afternoon Ella was invited to hunt Easter Eggs with Savannah. The parents all had high hopes that this would be a lot of fun for the girls. Unfortunately they are still a bit young to really grasp the concept. They each got a couple of eggs, then found other, more exciting things to play with. The bubbles were especially entertaining.
We had our official Easter meal for dinner, complete with ham, mashed potatoes, broccoli, cabbage and rice pudding. With all the excitement of the day, Ella skipped her nap (ugh!) so she went to bed shortly after dinner while Mommy and Grammy watched Extreme Makeover: Home Edition and Daddy went to our neighbor’s house to play poker. It was a great Easter.
This is Joe. Yes, you have not heard from me in a while on Ella's blog as Katie has adopted the primary role in managing and developing it. Yet, I felt compelled to post about a very special event which occurred last week in Georgia. Our good friends Andrew and Shawn Tavani live in Georgia where they are raising their beautiful little daughter, Ellie who also has EB.
You may have heard us mention a few times in past posts about how we were introduced to the Tavani's a few days after Ella was born in June of 2007. By the grace of God, a mutual friend of ours hooked us up at a time where we were looking for answers to the myriad of questions we had about EB. In entered Andrew and Shawn and Ellie into our lives and we have been friends since.
On April 2, 2009, as a result of the committed efforts by the Tavanis, the Georgia General Assembly passed a resolution making the last week of October Georgia EB Awareness week (the same week of the National EB Awareness Week). You can see the proceedings by clicking on the following link below. The most pertinent event happens right around the 3rd minute where Ellie is introduced and then the votes by the members are recorded.
Sometimes I talk to myself. Don’t deny it, I know you do it to. But I always find comfort in knowing that I'm in the privacy of my own home when I'm talking to myself, so no one else has to be part of the conversation...unless I'm driving in my car. In that case I hope that those around me think I'm talking on my cell phone or singing along to the radio. Sometimes when I’m driving around and talking on my cell phone I can’t help but wonder how weird I must look. Well today, I saw how I look. I was stopped at a red light, bopping along to the radio, and when I looked at the car next to me the girl was obviously in a very intense conversation. She was talking with her hands and everything...it looked very dramatic. I laughed at her…I admit it, then I tried to get a closer look to see if she was really talking on the phone or just talking to herself. Then I laughed again because just yesterday I was talking to my mom and I know I looked just like her.
And because I know you all are interested, Ella is feeling much better. No more puke and her nose isn’t as runny…the snot is now clear, not the gross yellow/green color that it was (sorry if that was too much information). And her eating has gotten better. Last night she ate 3 chicken nuggets (that’s a lot for Ella) and some broccoli and drank a ton of milk, so I was happy.
Poor Ella is sick. She was acting not Ella-like all weekend, and she was not eating as much as her mom likes for her to eat. She had more boogies than I thought a 21 month old could produce and I became the mom that had not 1, not 2, not even 3, but at least 4 tissues in my pocket at any given time. Have I told you how when Ella has a runny nose she likes to swirl her finger around in it? Well, she does and it’s gross. I think she gets that from Joe.
Ella’s runny nose was so bad that one day she grabbed her snot bulb syringe thing and brought it to me. She looked at me with those blue eyes and that runny nose and said “Boogies.” I asked the obvious question, “You want me to suck out your boogies” and Ella replied with her standard, “Ok.” I only do the snot sucker (as we like to call it) in extremely necessary occasions, since Ella could develop blisters in her nose that could cause breathing problems. I figured since she asked me for it, this was extreme.
I always stress out when Ella doesn’t eat as much as usual. Having a kid that is small for their age causes enough anxiety, but when your skinny kid won’t eat it’s even more worrisome. Friday night she did pretty well with her pizza (thanks Jess and Rob), but Saturday she didn’t do well, and Sunday she did even worse. I even bought a new container of ketchup (since she will eat anything with ketchup on it…she even dipped her chocolate chip cookie in ketchup last night…the ketchup obsession she gets from me), but after ½ a chicken nugget she was done. Please pray that Ella’s appetite picks up. I’m sure she’ll be fine in a couple of days, but for now she has her mom worried about her food intake.
This cold did give me a first-time adventure as a mom. I thought after 21 months I had pretty much experienced it all, but no. Last night, for the first time, Ella puked on me…awesome.
I’ve uploaded some new pictures and videos in the March 2009 folder to the right. I must give you a fair warning on 2 very important things.
1) She’s VERY cute…let me emphasize the VERY!
2) She’s a genius. While one of the new videos shows her knowledge on just 4 colors, rest assured that she knows ALL of her colors. In fact, yesterday she asked to go outside and see the purple flowers. This is on top of knowing her entire alphabet, and being able to count to 10 (and I can’t leave out her animals and their noises). I just need to know one thing…is this normal for a 21 month old?