I'm Sad

I’m sad…Ella’s sad too…and I’m pretty sure Joe is also sad. Why? Because today Savannah and her mommy and daddy are moving. Boo Hoo!
Savannah is a mere 2 weeks younger than Ella. They moved 2 houses down from us just a few weeks after we moved into our new house and we were so excited for Ella to have a playmate. They have so much fun together and play almost every day. Ella will ask to go to Savannah’s house and just the other day Savannah came over to show Ella her new princess bracelet. I never worried that Savannah was going to hurt Ella. They had fun together, but she never tried to grab Ella or do anything that would give Ella a boo boo. They are best friends.

But today Savannah and her family are moving all the way across the country to California! They moved here from Cali so that Madison, Savannah’s mommy, could go to school and get her Master’s degree, but now she’s finished with school and they are headed back west. We will miss them!

We will miss Brantley, Savannah’s daddy, coming over with plates of food because he made way more than they will eat. We will miss Maddie coming over and asking for eggs, milk, sugar, soy sauce, balsamic vinegar, or whatever else they ran out of right in the middle of making dinner. We will miss Savannah coming over to play with Ella. We’ll even miss Dorsey, their dog, and how sweet he is and how he would let Ella pet him and kiss him and pretty much do whatever she wanted to and he never ever reacted…not once. We will miss them SO MUCH!

I'm dreading tomorrow when Ella asks to go to Savannah's house. She won't understand that Savannah is gone and they can't play together anymore. I'm sad!

The good news is that we're already planning a trip out to see them sometime next year. In the meantime, we'll just say what Ella likes to say when people leave...See ya later!

The Roller Coaster of Ella’s sleep

I have to admit…I’m jealous of those families whose kids start sleeping through the night at 4 or 5 months. We don’t have that kid. And if I’m being completely honest, I get a bit perturbed when people complain that their kid didn’t sleep through the night until 6 months or even if their kid is 1 and sleeps through the night most of the time, but got up at 2 am for one fluke night…puh leese…if you’re looking for sympathy I’m the wrong person to talk to. That’s nothing. From what I hear, most EB kids don’t sleep through the night until they are much older…some even 4 or 5 years old. And Ella is no different. At 2 years old she still doesn’t sleep through the night. She does, however, usually just wake up once and it’s typically around 5 am, so we just give her a bottle and she’s back asleep within minutes. Joe and I have learned to function with broken sleep. Sure, I’d prefer to have a full nights sleep, but I feel like I can function MOSTLY fine when I’m woken up just once.

This weekend, however, things went wrong…very very wrong. Friday night was fine and Ella slept until 10 am Saturday morning. I thought she knew we needed the sleep, but no, she was just getting rested up for Saturday night. Ella didn’t nap at all on Saturday, which always makes for a bad situation. When she went to bed that night I didn’t think much of it, except that I knew she was tired. Well, she woke up every 1 ½ to 2 hours ALL NIGHT!!! It was terrible. Joe and I have this deal…I get up with her first then he gets up with her, then me, and so on. That way at least one of us gets to rest while the other puts her back to bed. Sometimes we even play the bargain game in the middle of the night…”If you get up with her this time I’ll get up with her all night tomorrow night.” Fortunately she did nap yesterday (church always makes Ella tired), so I had high hopes for last night. They were shattered at 1:30 am, and 3 am, and so on. Again she was up every 1 ½ to 2 hours.

On nights like this I go through all the stages of emotion…concern - what if something is wrong; sympathy - poor girl can’t get comfortable and sleep; anger - what is her problem; sorrow - all I want is to sleep…is that so wrong; disregard - go ahead and cry…I can sleep through it. Some nights…if this has happened several nights in a row, I will even burst out in tears and beg God to help her sleep.

Today I’m exhausted. It has been 2 nights and I’m fearful that tonight will be a third. The good news is that this always comes to an end. Sometimes she has nights like this for just 2 nights, and other times it lasts for a week or more…but it always comes to an end and we get back to normal…or at least as normal as Ella’s sleeping can be.

Ask Nicely

Do you see this sweet face?

Well, I hate to be the one to inform you but this sweet face isn’t always…well…sweet. Once she hit two she developed this little attitude. She has learned that crying can get her what she wants. She has learned to yell. And she has learned to throw a tantrum…an on the floor, kicking tantrum. Ahh, yes…we have reached 2 years old.

I read one time that much of the terrible two’s is out of frustration. That they get very frustrated that no one can understand what they want. I have found this to be completely true. Ella’s language skills are pretty good for her age, and as her mom I can understand most of what she says, but sometimes she asks for something and for the life of me I have no idea what she wants. She ends up repeating it 10 times and I usually ask her to go get what she wants, or I just start pointing to things in hopes that I’ll eventually find what she’s asking for.

Our most recent development is that she stopped asking for things and started yelling and demanding things. This did not go over well with me, so whenever she would yell for something I would look her in the eyes and say very calmly, “Ella, you need to ask nicely. Will you say, ‘Can I have some ice cream please?’” Then when she repeated it nicely we would give her what she wanted. It took about 3 days of Joe and me constantly reinforcing this idea. Finally, one day she was demanding ice cream with sprinkles (I fween with spweenk woos) and I said, “Ella, can you ask nicely?” And do you know what she did? She looked at me with those big blue eyes and that sweet face and said, “I fween please mommy!” I was so proud of her! I showered her with kisses and ran upstairs to get her ice cream with sprinkles. She had a huge smile on her face because she knew that she had done something good. And the reward was just what she wanted.

She’s doing so much better on asking nicely now. She still demands things sometimes, but if we remind her to ask nicely then she’ll repeat her question in a nice way. Joe and I have also learned the art of responding to her without giving her an answer. Luckily she doesn’t know that’s what we’re doing. She’ll ask for something that we can’t give her right then, so we’ll say “Ok, we’ll get it for you in a minute.” Or “Can we get that for you when we get home?” And she’s fine for a while. Sometimes she even forgets about it…if we distract her the right way.

Last night Ella and I went to Safeway to do some much needed grocery shopping. The second we walked in the store she saw a Mickey Mouse balloon and yelled “Mickey!!! Hi Mickey!” Of course everyone in the checkout lines looked over at us and smiled. She chatted like this throughout the entire store. Her biggest request was for Larry (the cucumber from Veggie Tales). She realized that asking for Larry was getting her nowhere, so she paused and thought for a minute then asked me, “Cumber?” So we went and got a cucumber, which was promptly named Larry and she carried it the rest of the time in the store. Kids are so funny. They make everything, even going to the grocery store, an exciting event.

Wow, it has been a long time.

I know it’s been over a week since I last posted. We were busy and time slipped right past me. And I wanted to be sure and get the new pictures uploaded so you could check them out. There’s a new July 2009 folder for your viewing pleasure.

First things first, I want to introduce you to Megan.

Hi Megan!

We had the pleasure of having Megan over for dinner on Monday July 6. Megan is 18 years old and just graduated from high school. She was the Salutatorian for her class and in the fall she is going to be a freshman at Duke. Can we say S-M-A-R-T!

There are a lot of interesting things about Megan. She volunteered at the Library of Congress this summer. To get there she took the metro and walked to the building. This week she’s a counselor at Camp Discovery. Last year at camp she was able to climb a rock wall for the first time. She said it was very cool. She’s really into politics and volunteered for the Obama campaign even though she wasn’t old enough to vote.

I’m telling you all this because Megan also has RDEB, just like Ella. I read an article about Megan and in the article it mentioned that she was going to be spending part of her summer in DC. Of course I put my EB contacts in motion and was able to connect with her. It was such a pleasure and encouragement having Megan over for dinner.

In one sense, Megan is a pretty typical RDEB. Her fingers fused when she was still pretty young, but she can handle things really well with her hands the way they are. She also has a g-tube, but still sat down and ate some spaghetti and chocolate cake with us. But in another sense, Megan is much more than a girl with EB. She doesn’t let anything slow her down. Her attitude is, “If I have to pop a couple of extra blisters at night because I did something fun that I wanted to do, then I’ll pop the extra blisters.” She chooses not to let her EB dictate who she is and what kind of life she’s going to lead. She is even going to college in NC, but her mom lives in FL. She’s going to live in the dorm and live the life of a normal college student because she wants to. She didn’t seem concerned with being away from her primary care taker for college, or walking from building to building. She wants to go to Duke for college…so she is. What an encouragement!

As I mentioned, Megan was Salutatorian of her class. In talking about this great accomplishment, Megan mentioned that she really liked being smart because it gave people something to talk about other than her skin. It wasn’t “Megan has a skin disease,” but rather, “Megan is really smart.” I felt like I really could relate to that. I know that people have difficulty looking past Ella’s skin. I love that she is smart for so many reasons, but one of my favorite reasons is because it gives people something else to see in Ella. It gives them something else to think about when they hear her name. It was so great talking to Megan and hearing her positive outlook on life. What a great inspiration to us.

Ella is growing more and more each day. She is still very into her music, but it has taken on a whole new form. Now she likes to finish her songs with a big “Ta Da!” Even on Sunday Jenni (the one who made the CD for Ella when she was born) was singing in church and when she finished Ella said “Ta Da!” She also prefers to sing solo…I think she gets this from her Paw Paw. When she’s singing a song and Joe and I start to sing along she says, “No Sing!” then goes about singing by herself. We recently got Ella a new DVD called “Choo Choo Soul.” Ella loves it! She listens to the music and dances along and her favorite new move is to clap her hands above her head.

Friday was Joe’s birthday…he’s 34. Ella got him a new Blue Tooth since his other one broke, and I got him new shoes and a new leather folder to carry files in for meetings. We also went to Hana Tokyo for his birthday dinner. Hana is our favorite restaurant and Ella really enjoys the Hibachi show. Whenever they flare up the fire she says “Wery Hot Fire!” Grammy Janet came in on Saturday to help celebrate Joey’s birthday and Ella had a lot of fun playing with her all day. She even got comfortable with Grammy’s friend, Burnadette…Ella just called her Burn.

We had a busy but fun weekend. Saturday we got a refrigerator delivered for our basement. We’ll use it to store extra food, soda, meat, etc. We’re so excited to have it! Sunday morning we went to church and Ella actually seems to be doing much better with the shyness. We still have a long way to go, but I have noticed some improvement. Sunday afternoon we went to lunch with Jenni, Russ and baby Millie and afterward they came to our house to visit. Sunday night we went to Old Town Alexandria to walk along the water and got some ice cream with church friends. Sunday night we were all tired and slept really well. The weather was beautiful this weekend and we were able to eat several meals outside. One night we opened all the windows in the house and slept with the cool night air instead of the air conditioning. We count ourselves so blessed this summer because the weather hasn’t been as hot and humid as is traditional for DC. I feel like God has kept the weather at bay just for Ella, and we are very appreciative. She’s been able to get outside and play and her skin has been doing pretty well. Of course we haven’t hit August yet, but for now we’ll thrive in the cool.

Cincinnati – Part 2

Friday morning we slept until 10 am! No joke…even Ella slept until 10. We were VERY tired from the day before. We went to the Waffle House for brunch and I must say it was a complete disappointment! I ordered biscuits with gravy, but they were out. Joe suggested French Toast as an alternative, but they don’t sell French Toast. I went with a waffle and while it was ok, it was definitely not the best waffle I had ever eaten. We decided that we weren’t going to visit the Waffle House again.

After brunch we headed down to KY to visit some of Joe’s friends, the Ray’s. This was a couple that he met while working in NJ and has remained in contact with them. It was great to meet them and spend some time with them. They have a new little grand daughter named Josie, who we also got to meet. She’s only 3 weeks old and was so tiny compared to Ella. We stayed there all afternoon and were able to have dinner together. They are a wonderful family and I was so happy to finally get to meet this couple that Joe speaks so fondly of.

Saturday morning we headed to the Newport Aquarium and met up with Joe’s sister, Maureen, and her family, husband Dan (who is actually from Cincinnati) and daughters Edie and Alice. Ella has been to the Baltimore Aquarium, so she was excited to see all the fishies again. She even called the Jellyfish “bubbles” since they kind of looked like bubbles floating in the water. While the aquarium was great, Ella was not in a great mood and kept throwing fits. 2 year olds can have quite the attitude when they want to, and it can really get on a mama’s nerves! After the aquarium we went to lunch. In a moment of genius we decided to get all the kids ice cream, which kept them quiet the entire meal and the adults could actually have a conversation! I got some of the greatest fish and chips I’ve ever had! I LOVE fish and chips. If it’s on the menu I usually get it…especially from a restaurant located on water.

After the Aquarium we went back to our hotel room so Ella could get a nap and hopefully snap out of her crabby mood. I think she was just tired of all the traveling and being in new places and meeting new people. I also think her bed had something to do with it. The hotel didn’t have any cribs, so she had to sleep on the floor. We tried to pile up blankets for her and put a barrier around so she wouldn’t roll off, but I’m sure it wasn’t very comfortable. Anyway, the nap totally worked and Ella was great for dinner at Dan’s parents house. They had corn with dinner, so I know that helped. She loves corn and would eat it every meal if we let her. She especially loved meeting Mo and Dan’s dog, Daisy. She loved getting kisses from Daisy and wanted to be wherever Daisy was.

We didn’t stay and watch the fireworks. We figured that Ella is too young to know what she’s missing, so we’d just go back to the hotel and go to bed. Even on the way back to the hotel we could see several sets of fireworks from the car, and we tried to point out the “glitter in the sky” to Ella. She was way more interested in other things. Next year I’m sure she’ll want to see them.

Sunday morning we woke up and packed up our room. It’s really amazing how much stuff we had to travel with…car seat, huge suit case for me and Ella, Joe’s suit case, box of bandage supplies, diaper bag, stroller, Joe’s backpack, my purse…and we can’t forget doggie who couldn’t be put in the diaper bag but had to be held by Ella! I can’t imagine traveling with 2 kids.

Before we left town we hit the Cincinnati Zoo. Mo and Alice met us there since Alice’s grandma (Dan’s mom) is a volunteer for the zoo. She gets to take care of and completely spoil a 1 year old Wallaby. He was so cute! We got to see several of the other animals in the zoo, but Ella was especially excited about the elephants…of course! Unfortunately when we were watching the elephants a stranger came and stood next to us (how dare he!) and Ella completely lost it. I really hope she gets over this shyness soon! It cramps the Murray style! If you have met Joe and me then you know that the word “stranger” isn’t in our vocabulary. We’ll talk to anyone! Anyway, we grabbed a quick bite to eat and headed to the airport.

You already read about our journey home in the previous post, so I won’t repeat it here. It was a nice visit but we were all very glad to get home.

Cincinnati recap - Part 1

I know you all are chomping at the bit to get the 411 on Stinkerella. Sorry it has taken me a few days to update. We were supposed to have a direct flight from Cincinnati on Sunday at 2:00 and arrive in DC around 4:00. Well, that flight was cancelled, so we ended up flying to Newark then on to DC. We got home around midnight. Ella was so excited to be home that she was running around the house. She would run up to me and say…I mean YELL, “Hi Mommy!” Then after I would say hi back, she’d say, “Bye Mommy!” and run over to Joe and yell, “Hi Daddy!” And when he would say hi back she’d yell, “Bye Daddy!” and run back over to me. This went on for probably 30 minutes until Ella’s mean mommy put a stop to all the fun and made her go to bed. I was being selfish, I admit it. I was tired and wanted to go to bed.

Ok, so on to the beginning of our trip. We left Wednesday afternoon and arrived in Cincinnati safe and sound. Ella was awesome on the flight! She fell asleep as soon as we boarded the plane, before it ever even took off, and slept until I stood up to exit the plane. All of our luggage arrived and we headed to the hotel. As luck would have it, right across the street from our hotel was a Skyline Chili restaurant. Of course we had to eat dinner there! I had what they call a 3-way (spaghetti, Skyline chili and cheese) and even Joe said I had the best meal of the family! Ella just had spaghetti and cheese and she loved it, although I think she loved the oyster crackers more. Joe had cheese fries and a salad. A salad? Really? Who did I marry?

Our first appointment was at 8:00 am on Thursday morning with the Opthamologist. Ella did as well as a 2 year old can be expected to do. Luckily she was fascinated by the bright lights, so she looked into it long enough for him to get a good reading on her eyes. She’s farsighted. He said this was pretty normal for kids and that they typically grow out of it. What we have to watch for is if she starts to get cross-eyed. For now we’re just going to wait and see if it starts to correct itself, but if she starts showing signs that she’s getting cross-eyed then she’ll need glasses. The best news is that she doesn’t have any scarring on her eyes from corneal abrasions. This is GREAT!!!

Next we went to the dentist. I told the nurse that was getting us settled that Ella probably wouldn’t cooperate. She said, “She’ll probably cooperate as much as all our other 2 year olds do.” That made me feel better…they were prepared for a feisty 2 year old that didn’t want to open her mouth. They let Joe hold her as they examined her mouth and the doctor was incredible! He was quick and to the point. He said her teeth look great. A lot of EB kids have problems with enamel and they get cavities easily, but he was really pleased with how her teeth looked. He said to keep brushing like we do, and even gave us these little sponge tip things to use instead of a regular toothbrush if her mouth seems especially sensitive. The good news is that Ella likes having her teeth brushed.

This year we had about an hour of down time to eat lunch. Last year we were running here there and everywhere and didn’t get to eat until everything was over, so it was nice to have a little break. We headed up to the EB clinic and were able to meet 3 other EB families.

I think we explained last year, but for those of you who didn’t read the blog last year, what they do is basically stick us in a room and we stay there for 2 hours (or more if needed) while various medical professionals come in and talk with us and look at Ella. I’ll take this opportunity to say a huge THANK YOU for all your prayers. Ella did great! She was such a champ the entire visit! Joe and I decided that it was in the best interest of everyone if we brought along Ella’s portable DVD player. Ella was able to watch her videos and Joe and I were able to talk with the doctors. The other great thing was the hospital hospitality staff gave us a little bag with activities in it, including 2 of Ella’s favorite things…crayons and bubbles! It also had a Dora sticker which was just an added bonus. The first thing they did was weigh Ella, and she was not happy about that. We were putting her up on the scale and she kept saying, “No ready…no ready.” In the room we were asked to undo the bandages on Ella’s worst part, so we chose her left leg. The left leg was the worst at birth and has remained the worst throughout. While it’s a grillion times better than it was (is grillion even a word?), it’s still the place that gets the most boo boos and has the most fragile skin. So I unwrapped Ella’s leg and she just laid there and completely cooperated. The doctor was very pleased with how her leg looked. I showed them her left arm too, and the doctor said that she didn’t need to see anymore and that if that was Ella’s most severe part then she wasn’t too concerned. What a relief! All of the medical staff we met with was really pleased with Ella and how she is doing. Praise the Lord, she remains pretty moderate to mild for RDEB (Recessive Dystrophic EB) and doesn’t seem to have any secondary issues developing at this point. Her hands are starting to web, so that will likely be something we’ll have to address down the road, but for the most part they are all really pleased with how she’s doing.

The best part of the visit was when the nutritionist came in. She looked at Ella’s growth chart and her growth curve and was so happy with how Ella is maintaining her weight and growing. She was checking Ella out and asked, very sincerely, “Is she sticking her belly out?” Joe and I laughed and said, “No, that’s all Ella.”

We came home after the visit and within 20 minutes Ella was fast asleep. My wonderful husband went to Outback and got us steaks with all sorts of sides, and he even got us an appetizer and dessert. We had a nice quiet dinner together while Ella slept.

The day was a great success. Thanks so much to all our prayer warriors out there! We always appreciate your prayers, but especially when they help Ella stay calm and cooperate as well as she did on Thursday. She didn’t eat much during the day, but I was ok with that given that she cooperated for the visits. She’ll make up for the lost food, I assure you.

I’ll fill you in on the rest of the trip in the next post. I know this is getting long and as much as I’d like to think that you live to read this blog, I know that you all have more important things to do with your day.