Thursday, June 30, 2011

For the Love of Princesses

I realize that most 4 year old little girls are obsessed with princesses. The fact that there is an entire aisle at Target dedicated to princesses tells me that Ella is not alone in this. However, I believe that for Ella, her love is deeply ingrained in her.

Let me give you some background.

Here’s a picture of Joe and I on our wedding day.

Yes, I’m wearing a crown. Not a tiara…a crown. It was hand made by my grandmother for my mom when she married my dad. When I was little the crown was off limits. I wore it one year when I was a princess for Halloween, and every so often my mom would pull it out for me to look at. My childhood dream was to wear it when I got married.

My dress was bought to match the crown. I knew what I wanted…something with no pearls or crystals and it definitely needed a puffy skirt. The puffier the better. In fact, when my mom and I found my dress it was almost perfect, it just needed more puff…so I added a petticoat…then I added another. Yes, I walked down the aisle with TWO petticoats under my dress. My dress was so “princess-like” that it even had a lace-up back. And yes, just because I know you’re dying to know, I wore glass slippers. Actually, they were clear plastic and covered in glitter, but that’s the closest thing to glass slippers I could get.

And yes, Joe and I left the church in a horse drawn carriage.

So you see, Ella’s love of princesses is deeper than Disney movies and fancy dresses. It’s a love she was born with, and a love that I hope stays with her until she gets married and walks down the aisle wearing the pearl crown.

There was just one part of our wedding that wasn't "princess-like." We wore these to the reception.

Just keeping it real.

Sunday, June 26, 2011

Princess Palooza

Well, the Princess party went off without a hitch. There was one point around 12:30 when I thought, "What am I going to do with all these girls? I've already used 2 of my 3 activities!" Luckiy, most of them don't have a backyard (welcome to life in DC) and Ella has a great swing set, so they were very content to play outside at "Ella's park."

We threw Ella a huge birthday party when she turned 1. She doesn't remember it, obviously, but we really wanted to throw it as a way to celebrate her life and thank all of the incredible people who did so much for us in the first year. They were the ones that deserved a party! We rented out the basement of a local pizza place and I bought cupcakes, Joe wore his Mets Hawaiian shirt and we had a great time. You can see the pictures here.

After that party I swore we wouldn't have another one until Ella was old enough to actually know what was going on. I wanted the next party to he HER party and to invite HER friends. I assumed she'd be 5 before that happened.

Throughout the year Ella was invited to several birthday parties of her friends, which got her to thinking. One day she just decided that she wanted a Princess birthday party, and that was it. She started telling Joe, Metti and me all about it. She even invited her BFF Ginny, and Ginny's mom informed me that Ginny had been telling her all about Ella's Princess party and that Ella had invited her to attend. Then, GiGi and PawPaw bought her the most magnificent Cinderella dress straight from Disney World, and I knew it was time. A Princess party would take place.

I visited 4 different stores in search of the most fabulous pink decorations. Metti and I spent all Friday afternoon decorating. Metti is a saint...she single-handedly blew up 40 pink balloons. I used 2 rolls of streamers and had 2 more rolls that I was itching to use. I asked Metti where I could put more sreamers and she looked around the room, then said in her casual way, "Maybe you could save them for next year." That was her way of saying there were plenty of decorations and I should stop. Here's the living room.
The party began at 11 am. Ella and I got dressed in our princess attire (I was the Queen Mum) and Joe put on his Met's Hawaiian shirt.
I would like to thank the fabulous Mary Jane for loaning me the most perfect Queen Mum dress on the planet. Please note the rhinestone sleeves. I think I look more like Glinda the Good Witch, so I gave Joe the full crown (as King) and I wore a tiara.

Princesses started arriving and the house was all a buzz. I wanted a lot of balloons so they could throw them up and bounce them around, and that's exactly what happened. Ella's preschool class only had 3 girls (including Ella) so we were able to stick to a small party with her 2 friends from school and 2 of her good friends Ginny and Lizzie (since she had already told Ginny all about the Princess party and invited her 4 months ago).
We started off with a necessity for every Princess party...tiara decorating.

Next came the, every princess' favorite food. We did have a bunch of pink chocolate and Princess candy, which the girls were more than happy to eat.

Then we had the Princess Ball...oh yeah, we were getting our boogie on!

We moved outside to play on the swingset. It was a beautiful day and the Princesses loved running around in our un-mowed grass. (PawPaw, the next time you come visit we need to get that third swing fixed.)

We eventually came back inside for the birthday song and cookies. Princess Ella and the Queen Mum have one very big difference in them. The Queen Mum LOVES cake! I always have...probably always will. I will never turn down a piece of cake. Princess Ella, on the other hand, sort-of likes cake, but she usually just eats the frosting off and maybe takes 1 or 2 bites of cake and that's it. So Ella made a special request to have cookies at her birthday party instead of cake. When Grammy Janet was here earlier in the week, she and Ella made the frosting for the cookies (don't even get me started on the deliciousness of Grammy's frosting). I stayed up until 1 am Friday night (Saturday morning) baking and decorating the heart shaped cookies. Let me just say that they were delicious!

After the cookies we headed to the basement where the girls played and watched Snow White, and the mom's sat around and talked.

It was a great birthday party and we all had a lot of fun! After everyone left I immediately got out of my Queen Mum dress, Joe laid down and took a nap, and Ella downed 2 more pieces of pizza while watching the end of Snow White. You can see the rest of the pictures and video from Ella's Princess birthday party through the June 2011 link on the right.

The evening was spent with the fantastic Maryland Eagles...but that's another post.

Wednesday, June 22, 2011

Happy Birthday!

Dear Princess Ella,

My 4 year old miracle. Oh how happy I am to spend the day with you!

4 years ago the doctor told me you wouldn’t live through the night.

Today I laughed as I watched you dance around the living room in your princess dress and tiara. That doctor tried to rob me of this day. Thank heavens God had bigger plans.

I love you more than you will ever comprehend. I love that you are a girly girl. I love that you spend your days playing Princess and dressing up in various “no legs” dresses. I love that you let me put big bows in your hair and that the first thing you ask for in the morning is a bow. I love that you wear pink all the time and constantly tell me, “Pink is my color!” I love that you love to dance just like they do in the movies…slowly and hand in hand. I love that we paint hot pink fingernails on your bare fingers because you love the way it looks. I love that your favorite thing to put on is red lipstick. I love that your favorite time of the day is singing songs right before bed. I love that when you’re really excited your eyes get huge and you talk very quiet. I love that you give all of your dolls their own voice and actively have conversations with them. I love you so much!

You just completed your first year of preschool. Over the course of the year you grew so much. You aren’t nearly as shy as you used to be (although you’re still shy) and you have learned to speak loud and look people in the eye when you talk to them. You love playing games with your friends and appreciate the structure of organized play time. You still love books and ask to read at least twice a day. Soon you’ll be reading on your own and I will miss our reading time together.

Unfortunately, you have also developed an attitude and have perfected the art of whining. I hope that now that you’re 4, this stage will pass, but it also makes me fear your teenage years.

You are so smart and know more than I think you should know. You have more perception than a typical 4 year old. You can sense when something is going to happen, and you know when a person is gentle and kind, and when they are not. GiGi calls you her Steel Magnolia bud. You’re as beautiful and precious as a flower, but as tough as steel.

As you grow, you are more and more aware of who you are and how you fit in the world. You often ask why you have boo boos and tell me that “Princesses don’t have boo boos.” I remind you that only very brave princesses have boo boos, and that makes them extra special. You don’t like being called brave, but that’s the best word to describe you. You are SO brave!

I pray that as you grow, you embrace who you are in Christ. I pray that you see the beauty that He sees and that you accept and appreciate how He made you so special. I pray that you learn to love Him with all of your heart and seek to live life as an example of His love. God doesn't make mistakes. You are perfect and beautiful in His eyes.

Ella, you are the greatest addition to our family! Your daddy and I are better people because you entered our lives. God has big plans for you! You have been created for a purpose and I can’t wait to watch you change the world.


Princess Mommy

Tuesday, June 14, 2011

Hello Summer...Hello Heat

Yay for cooler weather! It’s been hot here in the DC region. Really hot. So hot that Ella hasn’t been out of the house much. In fact, she stayed in the house all day every day Monday-Friday or last week. She did have a friend come over last Monday for a playdate, so she didn’t spend her week completely sheltered from the world. However, this heat is terrible and it means Ella can’t go outside. Yes, I could take her to the store or to a movie, and I could be sure to get the car nice and cool before I strap her in. The problem is leaving the store or theatre and having to strap her back into a hot car. I can’t just leave her inside the store while I go and get the car cooled off. She either has to sit outside in the heat and wait for the car to cool off, or she has to sit in the hot car waiting for the AC to kick in. Usually she’s crying the whole time.

Given the terrible heat and being cooped up inside, Ella developed a terrible case of cabin fever. During past summers she didn’t really know what she was missing. She was so used to playing inside that it didn’t really matter. Now that she’s been to school and played outside of the house several days a weel, she misses it. She talks about church school a lot, and about how she wants to see her friends. She even talks about her teachers and how she’s going to go see them soon.

All that to say, both Ella and I are so glad the weather cooled off. She got to go play with some of her friends at church yesterday and got to play outside! Today we’re going to the store to get some items for her special Princess birthday party. I would give anything to keep this cool weather all summer…it would definitely improve our quality of life.

The calorie counting is going ok. It’s really annoying to have to count every single thing that goes in her mouth. I was never good at dieting, and now I know why. It has been a daily struggle to reach my caloric goal for her. We probably hit the mark every other day, then on the off days we’re down by maybe 100 calories. When things are really bad we’re down by 500 calories, which happens about once a week. She still refuses to drink the calorie drinks (she won’t touch the smoothies, she won’t drink it with chocolate syrup in it, she won’t drink it plain…she won’t drink the stuff), so I just give her extra milk or juice throughout the day since she’ll drink those without a problem.

The good news is that the kid really likes high calorie foods. She ate 2 pop tarts yesterday morning (200 calories each) and she downed an entire hamburger happy meal Sunday night (about 500 calories). I will say that on the days where her caloric intake really drops, it’s because she’s so tired of us constantly shoving food at her. She’s better now that I’m not forcing her to drink those calorie drinks. Also, I try to give her a “day off” where she can eat whatever she wants, whenever she wants. I think those days make the other days more tolerable…for both of us.

Well, that’s all that’s happening around here (note first paragraph about the heat and us not leaving the house). Ella is feeling better and has gotten her voice back, thanks for your prayers. Hopefully I’ll have more exciting things to post about as the week progresses.

Wednesday, June 8, 2011

Not feeling well

Poor Ella has a cold. Well, I think it’s a cold. She doesn’t really have any symptoms of a cold other than a sore throat and raspy voice. Yesterday she didn’t want to eat anything because her throat hurt. She didn’t even want home baked chocolate chip cookies! What’s wrong with that kid? Her days have been spent pretty much laying around and watching TV, with little bits of playing here and there (mainly right after her dose of Tylenol).

Of course this falls on the heels of me counting her calories, so on top of not feeling well she has her mom constantly shoving food and drinks at her. A friend of mine told me that the worst situation to be in is when someone tells you that you have to gain weight…even worse than when someone tells you to lose weight. After going through the last 2 days, I think she’s right. Getting additional calories into Ella has increased our household stress. I’m constantly offering her food and trying to convince her that Pediasure doesn’t taste as bad as she thinks it does (PS, the stuff is disgusting…I can’t blame her for not wanting to drink it). The other night I was trying to get her to drink a glass of milk before bed just to get the final 100 calories in her. Poor kid. She should be able to just go to bed without her mom stressing her out.

Please just pray that Ella feels better and that her appetite increases. My goal is to get 1300 calories in her a day. The first day she was barely over 1300 and yesterday we missed the mark by about 50. I honestly think if she were feeling better it wouldn’t be such a struggle. Today she has perked up, but her voice is still gone…that hasn’t stopped her from singing along to Veggie Tales. She’s an incredible kid.

Thanks for your prayers and support.

** Update: Ella must be feeling better...either that or she's playing me like a violin. Our house is HOT (our AC is out) and Ella refuses to get dressed or leave the master bedroom (the only room with a small AC unit). I'm sweating like crazy and the child has the nerve to look at me with those big blue eyes, and say to me with that sweet raspy voice, "Mommy, can I have some pizza please?" Really, it's 90+ degrees in our house and you want me to turn on the oven and make pizza?

Yes, I did it.

Sunday, June 5, 2011

Brave as a Princess

We often tell Ella how brave she is. A few months ago she decided that she didn’t like being brave. Apparently she put 2 and 2 together and realized that being brave meant that something bad and painful was about to happen. Unfortunately, she was right. Whenever we would tell her she was brave she would say, “No I’m not!” or “I don’t want to be brave.” Too bad kid…you are the bravest little girl I know. And that was proven last week.

Ella and I just returned from her annual visit to Cincinnati for the EB clinic. We started taking her shortly before she turned 1. We go every year and our purpose has always been to establish a record of where Ella has been, so that when a problem does arise, we know what Ella’s “normal” is and how things have changed. Before we left on Wednesday I told Joe that this is the first time we’ve taken the trip where I have real questions about real problems that have come up. This was the first time I was going for more than just a record of her health…I needed medical advice.

We arrived Wednesday morning and spent the day having a nice lunch and going to a movie…which Ella slept through. We got settled at the hotel and stayed in for the rest of the night. I knew it was going to be a long day on Thursday, and I knew that we were in a new place that would cause some excitement, so I did what any parent in my situation would do…I gave her a dose of Benadryl. The child was asleep by 8 pm and all was right with the world. We woke up early the next morning to be sure and make it to our 9:30 dentist appointment. Ella is very protective of her mouth, so she was not keen on the idea of a stranger putting her fingers in her mouth. Luckily the dentist was named Katie, so we had a good conversation about how she was a nice lady because she had the same name as mommy. Ella opened her mouth wide so Dentist Katie could get a good look.

The best part was after the appointment the dentist went and found 2 princess stickers to give Ella. One of them was of Aurora (Sleeping Beauty) and it said, “Brave as a Princess.” How appropriate! After that Ella was ok with being called brave because, after all, princesses were brave…her sticker said so.

We had a break after the dentist, so we went and grabbed lunch then headed up to where the clinic is held. The clinic is wonderful and terrible all at the same time. It’s wonderful because we get to see everyone at one time. Every doctor that we see knows EB, so there isn’t any time wasted on explaining what the disease is, and every doctor knows Ella…they have read the profile I submitted and always come in prepared with comments and questions. It’s terrible because we are confined to a room for a couple of hours (give or take) and by the end of it Ella is very tired. Thank heavens for the Child Life Specialists who bring toys, videos, coloring pages ,etc to keep her occupied.

We made it through the clinic (Ella was a total champ) and headed back to the hotel. We stopped at Longhorn Steak House where each of us downed a steak…we deserved it. Ella was asleep within minutes of getting back to the hotel.

Friday was the day I was most worried about. We only had 3 appointments, but all 3 were medical tests and 2 of them were medical tests that Ella has never had before. I wasn’t sure how cooperative she would be. Did I mention that my kid is as brave as a princess? She was awesome!

First, she had her ECHO. This was a first for her, and walking into a dark room is pretty scary. The technician brought in a Child Life Specialist who walked through all of the equipment with Ella. She showed her each piece and explained what it was going to do. And she even let Ella touch the sonogram wand. That helped a lot! She also brought in a special princess DVD for Ella to watch during the procedure.

Once the tech got started, Ella was a champ. She was nervous about taking off her chest bandages, and I was nervous because her chest is really rough right now and I had visions of the sonogram wand causing all sorts of additional problems. Fortunately Ella just laid there and watched Tangled and the guy was able to check everything he needed. He went to great lengths to ensure that he didn’t cause further problems. He even got special sterile gel and covered the wand with plastic to make sure she didn’t get any germs. I am SO happy to report that we left with the same boo boos we came with…no new ones. And only a few tears were shed in the process. The best news is that according to the tech, her heart looks good.

Next we stopped and had a great chat with Geri, the EB nurse through Debra. We love Geri and unfortunately, don’t get enough opportunity to talk. It was so nice having a few minutes to catch up.

At this point Ella wasn’t allowed to eat anymore. Yeah, that was not fun. Ella still eats almost every 2 hours, even if it’s just a little snack, so the fact that she couldn’t eat for 4 hours was really hard on her. We went and had her dexa scan (bone density scan). She’s had one before and the scan takes all of 2 minutes, so that was no big deal. Next came the dreaded Barium Swallow…insert scary music here.

I have dreaded a barium swallow since Ella was a baby. I didn’t dread the results, but from all that I heard the drink that they have to drink is terrible and the last time we had to take Ella to get an x-ray she flipped out and ended up getting a huge boo boo on her back. Basically, with a barium swallow the person has to drink this white drink (I’ve heard it tastes a lot like chalk…yummy) and lay on a table while an x-ray videos the drink going down through her esophagus and into her stomach. EB also affects the esophagus, so this test checks for any closings in the throat that may be causing swallowing problems.

The assistant in the x-ray was an angel! When we first arrived she was talking to Ella and asked her who her favorite princess was. After Ella said the obvious, Cinderella, the girl went and found a Cinderella DVD for Ella to watch during the procedure. This made everything go much smoother. Then she got Ella her special drink and let her choose which flavor she wanted (she chose grape). Since Ella was so hungry she was more than willing to drink the stuff, regardless of how it tasted. The only time she freaked out a bit was when they brought the x-ray down and she was in this little tent type thing with the x-ray right over her face and body.

Let me take a moment to say that medical technology is absolutely incredible! Here we were…Ella was laying on an x-ray table watching Cinderella while she was drinking this thick white drink…meanwhile, the doctor, his assistant and I are watching a TV screen where we can see the drink go completely down her throat and into her stomach, then empty into her intestines. No joke, I watched the whole thing!

After we watched the drink they gave her a graham cracker with some white paste stuff on it, and we watched her chew it up and swallow it down. It was so fascinating!

I’m no doctor, and the doctor that was there didn’t give me much information on how her throat looked, but I have seen pictures of several EB throats and in my humble opinion, Ella’s looked pretty good (I realized I just jinxed her). There was one very minor narrowing at the bottom, and a little place about half way through (that I couldn't even see but the doctor assured me it was there), but for the most part she looked good. The doctor even commented on how great the food went down and it didn’t get stopped by anything. This is GREAT news! He’s going to show the video to the Dr. who works with all the EB kids (he was out of the office for the clinic) so I’ll know more after he evaluates everything.

That was our last visit, so Ella and I headed to Cracker Barrel for a late lunch, then back to the room for a quick swim and a night in front of the TV. We spent Saturday at the zoo where I pretty much let Ella ride anything she wanted and eat anything she wanted. I figured that she had put up with a lot, and if she wanted me to pay $5 for a 10 minute Dora show, then she deserved it. We came home this afternoon (Sunday) and are so happy to be back!

So here’s a short rundown on where we are:

v Wounds, specifically her neck wound that isn’t healing – the doctor isn’t too concerned. She said it doesn’t look infected, which is great, but they took a wound culture just to check it out. She also gave me some new wound dressings to try.

v Hands – at this point we’re not doing anything. Her connected fingers really bother Ella and she talks about them constantly, so we’ll see how we feel in the future.

v Teeth – she has several cavities (which I had noticed a while ago) so we’re going back in August. They’re going to completely put Ella under (in the OR) and fill her cavities, do a thorough cleaning on her teeth and take x-rays. This may sound drastic, but I am so relieved to not have to hold her down during any mouth procedure. The thought of that makes me cringe. During this time they’ll also take any blood for testing (another relief…no visit to a clinic that freaks out when they see her) and they will likely give her an iron infusion (since her iron has been low for years and she's taking loads of supplements and it's still only creeping up). If there are any other procedures that need to be done they’ll try to do it at this time so that it’s all done at once. Ella will spend the night in the hospital.

v Weight – this is the biggest area of concern. She’s always been small, but in the past year she hasn’t gained any weight. This is a big problem. Joe, Metti and I have noticed how skinny she is, but the child eats great…I mean she seriously eats (she ate 5 pieces of pizza after we got home from the zoo…no joke). The first thing to look at was her throat to see if there were any strictures causing her to not eat. The second step is to pump her full of as many calories as we can get in her. This means that she has to start drinking Pediasure (disgusting…she hates the stuff) and we have to start sprinkling her food with this stuff called Duocal (basically powdered fat…sounds good doesn’t it). If neither of these work then she’ll likely have to get a g-tube (feeding tube in her stomach). Don’t freak out…it’s really not as bad as it seems. It’s very common among EB kids and it was never a question of IF Ella would need a g-tube. The question was more WHEN she would need one.

I think that’s about it for an overall summary. I say it every time, but it really is such a relief to have Ella seen in Cincinnati. Yes, it’s a plane trip, hotel stay, etc, but for us it’s worth it just to see a team of doctors who know EB.

We are both so glad to be home, and Ella was especially excited to see her daddy! They missed each other a lot! Tomorrow it’s back to our regular routine.