TREETACULARITY!!!

Wednesday night we took Ella to her first viewing of the First Baptist Church of Alexandria, VA Living Christmas Tree (LCT). If you don’t know what a living Christmas tree is, here’s a picture.

Imagine choir risers that are in the shape of a tree and covered in greenery and lights. The heads of the choir members are the ornaments. While the choir sings, lights on the tree are synchronized to the music. There is a play that takes place between songs, and a full orchestra accompanies the choir. It’s unlike anything you’ve ever seen. It’s truly…TREE-TACULAR!!!

I sang in the LCT one year. I started singing in choir in 4^th grade (shout out to the Casper Children’s Chorale). I have been a member of girls choirs, combined choirs, All-State Choir, Show Choir, Jazz Ensemble, select ensembles, worship team, Church choir, you name it…I’ve pretty much sung in it. But this…this was a whole new experience for me. And I was embarrassed that I was only 27 and was struggling through, while there were people twice my age who didn’t even bat an eye at all the hard work. Each year they do 7 performances…yes, 7 (8 if you count the Wednesday night dress rehearsal). Thursday night, Friday night, Saturday at 2:30, 5:00 and 7:30, and Sunday at 5:00 and 7:30. It’s intense. Don’t tell anyone, but during one of the rehearsals I passed out. I had been working all day and had rushed from the office to LCT practice without having dinner, and it was hot. That’s when I decided that I was too old for this. Ever since then I’ve been a spectator, and every year I love going to the LCT.

I really wanted to take Ella this year. I knew she would love it! She loves singing along to the hymns at church, and she often sings along with the soloist…even though she doesn’t know the words. Add to that the fact that she’s VERY excited about Christmas and Christmas trees, and that she always asks to listen to Christmas tree music, I just knew the LCT was for her. Wednesday night was the dress rehearsal and their Special Friends night, the church invites people from the special-needs community to attend the show. So we thought this would be the best time to take Ella. If she decided to sing along with the tree, most of the people around her wouldn’t be bothered…and they might even join in too.

Ella didn’t sing along. She was so mesmerized by the lights and singing, that she barely even blinked. She sat in my lap the whole time just staring at the tree and lights. After each soloist sang she would say, “Good Singer!” and that was it. She loved it! They always end the LCT with the Hallelujah Chorus, and as is tradition, the audience stands. This was when Ella decided to start singing. She sang along to the whole song and loved every minute of it.

Afterward we went to the Big Yellow M (McDonalds) with some friends and got hot fudge sundaes and Ella got French fries. It was a great family night out. I can’t wait to take Ella again next year. Someday she’ll be singing in the tree!

"Normal"

Ever since Ella was born I have trouble defining things as “normal.” I always feel like I have to put the word in quotation marks because I have learned that “normal” means different things to different people. For us, our life is normal…it is normal to take 2 hours to give our child a bath and change her bandages…heck, it’s normal for us to have to do bandages at all. And when I look at others who have a “normal” family and “normal” lives, well, the truth is that for us that is completely abnormal. No matter how long we live, we will never know what that feels like.

I say all this because the winter brings us as close to normal as we’re ever going to get. Ella’s skin does great in the cold weather! We have to put a bit more lotion on than usual, but other than that she looks great (don’t misunderstand…we still have her arms, legs and torso wrapped completely). Right now (knock on wood) her face is completely clear, other than some milia and light scars. So, this weekend we went to Home Depot to get our Christmas tree. Ella was beside herself with excitement. She was completely bundled up. Snow boots, pants, sweatshirt, winter coat with hood pulled up, and mittens. The only thing you could see was that sweet little face. As we were walking in I said to Joe, “Ella looks like she’s a normal kid. She’s so bundled up that you can’t even tell she has EB.”

I often wonder what it would be like to go into a store and not have countless people stare at Ella. I can see the wheels turning as they’re trying not to make their stars obvious. We used to get bombarded with questions whenever we ventured out. Everyone wanted to know why she looked that way, and most of the people knew someone who “looked just like that” and it ended up being an allergy, rash, the water, etc. If I had a nickel for every suggestion we have received by complete strangers, Joe and I would never have to work again. I don’t know if it’s because Ella is getting older, or if it’s because my approach has changed, but is seems like the questions have died down. I used to be very on guard every time we ventured out…staring everyone down who looked our direction for longer than 30 seconds. Waiting, with guns drawn, for them to ask what was wrong. Now, I just go about my business. We walk up and down the aisles talking and playing, and I barely even acknowledge those around me. If I make eye contact with someone, I just give them a friendly smile and say hello, and go on my way. I still feel the stares, but I figure if I act like everything is “normal,” then they will too. And it seems to work.

So Saturday, in Home Depot, I got a small taste of what it would be like to live without stares. To have people looking at Ella simply because she’s cute, and not because they want to know what’s wrong. She was so excited to get a Christmas tree. As we were walking around looking at all the trees, I asked her what kind of tree she wanted. She yelled, “GREEN!!!” Given that we were looking at real trees and all of them were green, I laughed, and the woman next to me laughed too. We laughed because it was a “normal” 2 year old response.

Even though Ella’s skin is different, in every other way she’s a very typical 2 year old. I wouldn’t change her, and I wouldn’t even change the stares…I have learned a lot from them. Our family is perfect…our wonderful, happy, “normal” family.

GLASSES!!!

We picked up Ella’s new glasses last night. Here she is testing them out.



She looks adorable…if I do say so myself. And I have had more than one person comment on how much they make her look like Joe. I did give birth to her…wouldn’t it only be fair for her to look like me at least a little bit?

I left work and met Joe and Ella at the glasses place. Ella, of course, skipped her nap so she fell asleep in the car on the way and Joe had to wake her up to come inside and get her new glasses. She cooperated…she was still very excited to get glasses. When they handed me the glasses to put on her I looked through the little frames and my first thought was how strong the prescription is…then I was overwhelmed with guilt. Our sweet little girl has been walking around unable to see everything clearly. How sad! It made me wish we had gotten her eyes taken care of sooner. I just have to remind myself that we are fortunate to have caught it when we did so that she will hopefully avoid more damage in the future.

She seems to be adjusting well. Sometimes she will look over the top of the glasses, but the doctor told us that was normal and that she would stop doing it in a couple of weeks. During dinner she kept touching her right lens, which resulted in her glasses being coated in ketchup. And several times she went to rub her eyes and couldn’t because of the glasses, but overall she is adapting to them fine. In fact, she seemed to almost forget they were there and she just went on playing just like she always does.

We have gotten a couple of questions about Ella needing glasses. 1) Will they give her boo boos? We don’t know, but we’ll keep you updated on that. We do know of other EB kids who wear glasses without problem, so we are hopeful that Ella will be just like them. 2) Does this have anything to do with her EB? No. The fact that she’s far-sighted has nothing to do with her EB. EB does, however, cause her to have a lot of corneal abrasions which could eventually affect her eyesight if she has a significant amount of scarring.

I know it sounds weird, but there are so many things that we are praising God for with these glasses. First, not once last night did her eyes cross! This means they are doing their job! Second, her eyes are protected from wind and debris, so we are hopeful that this will reduce corneal abrasions. Third, she can’t rub her eyes, which means she will hopefully not cause boo boos around her eyes or on her eye lids. And fourth, they take her cuteness to a whole new level!

Happy Belated Thanksgiving!

The Murray’s spent Thanksgiving this year at home. We missed being with our parents and siblings, but Joe’s finals start this week, and he had 4 take home assignments that he had to do over Thanksgiving break. I’ve had a lot on my plate at work, and the older Ella gets, the harder she is to travel with, so, with all of those factors we decided just to spend the holiday at home. Thursday morning we woke up and I made blueberry muffins (at Ella’s request), then we all hung out together and watched the Macy’s parade. Ella was hysterical! Every time she saw a character that she recognized she would get so excited and start shouting who it was. She also loved all the dancing and music. She’s really in to dancing along with the TV, especially “Dancing with the Stars” (have I ever mentioned that I have a crush on Donny Osmond? It’s not to the extent of Elvis, but he definitely has a place in my heart and I was so happy that he won). When someone on the parade would be dancing, Ella would stand up and start spinning around and kicking her legs. When someone on the parade started singing, Ella would grab her toy microphone and start singing along…even though she didn’t know the words. She really enjoyed the parade.

We just laid around the house all morning. It was wonderful! Around noon I started making the 2 Thanksgiving dishes that I was in charge of…corn pudding and green bean casserole. I was fine with the corn pudding (thanks to sister-in-laws Sandra and Katie for emailing out their recipes) but wasn’t sure where to begin with the green bean casserole. So, I did what anyone would do…I googled it. I found this recipe that called for mushrooms and shredded cheese. Both Joe and I love mushrooms, so I decided to go with that one. Of course, right before I started making the casserole I panicked. I bought regular cut green beans (because they were on sale) and apparently traditional casserole has French cut green beans. And I started to worry about the mushrooms…Joe and I love them, but not everyone does. After worrying for far too long, I decided to go with my recipe WITH the mushrooms and just to use the beans I had. It turned out delicious and Joe even asked me to make it again because it was almost gone by the time he made it to that dish on the serving line.

We had Thanksgiving dinner with my cousins who live about 45 minutes from us. This is my dad’s first cousin and her husband, and their children, and their childrens children, and their childrens childrens children…does that make any sense? Anyway, there were a lot of 1st, 2nd, 3rd and 4th cousins there and it was a ton of fun. Ella was her typical shy self, but she warmed up enough to play with the dogs and count in Ethiopian, just to show off. She even let Alexa sit on Joe’s lap with her, one girl on each knee.

On Black Friday I let Joe do something that he’s been begging to do since we got married…I let him get a new TV. I feel like I should give some background. We have been using a 19 inch TV that my parents bought me when I was in college…and this was our nice TV. In our bedroom we had a 15 inch that Joe bought me our first married Christmas…and the color was starting to fade. For years Joe has been asking to get a new TV, but practical Katie couldn’t convince myself that it was time. Why waste money on a new TV when the ones we had worked perfectly fine? Sure, they were small, but they worked and that’s what mattered…right? Well, then I saw an ad for Target’s Black Friday sales and I calculated that we could get 2 new TV’s for the price of 1 at regular price…so I gave Joe the go-ahead. A week before Thanksgiving, however, I happened to be at Target checking out the TV’s and noticed that the 32 inch was on sale for $50 more than it would be on Black Friday. So I came home and asked Joe if it was worth it to go ahead and pay the extra $50 on a 32 inch TV and ensure that we have one, then just spend Black Friday buying the 40 inch. He weighed the pros and cons and decided to go ahead and bite the bullet, so he bought the 32 inch last week. On Black Friday morning our alarm went off at 4:30 am and Joe headed to Target. Soon, while Ella and I were still sleeping, Joe returned with a nice, new 40 inch TV. It’s a good thing he bought the 32 inch last week because by the time he got to Target they had already sold out.

We hooked up the TV’s around 9:30, then Joe had to head out for a 10 am appointment to get the car its 25,000 mile check. He was gone for several hours and came home for some Ella play-time and to start studying. He and Ella played for a few minutes, then as he was trying to get her down for a nap, all the power went out. Apparently the wind blew down a power line and our entire neighborhood was dark. (I have to put a little side note that you haven’t experienced REAL wind unless you’ve been to Wyoming.) Our power was out for 7 hours. Joe left to go to Starbucks and study, then we went to the Silver Diner for dinner (where Beck joined us). We had originally been told that the electricity would be back on by 7:30, so we thought for sure that it would be on after dinner. It wasn’t. The house was cold and Ella was tired, so at 11:00 Ella and I got ready for bed and piled into the car to head to Beck’s house. We’ve crashed with Beck on more than one occasion, and we were prepared to do it again. Joe was going to stay at home while Ella and I slept in Beck’s nice warm house with electricity. As we were pulling out of our parking spot Joe looked at our neighbors house and said, “I see lights!” I turned around to check out our house, and sure enough, we also had lights! By this time Ella was less than happy. She was very tired and very cranky and kept asking to go night night. We had hyped up going to Beck’s house with the joy of seeing a Christmas tree, and now we had to unload her from the car and go back into our Christmas Tree empty house. Ella was very sad that she wasn’t going to get to see Beck’s tree, but once we got back inside she was asleep within 10 minutes, so it all worked out fine. The saddest part was that Joe had 2 brand new TV’s, but he didn’t get to watch either of them. At this point I will give a special shout out to the wonderful people who bought us a camping lantern for our wedding. Without your gift we wouldn’t have been able to see a thing.

Saturday and Sunday were spent with more relaxing and a little more shopping. It was hard coming back to work today. I was spoiled with 4 days off and Ella was spoiled having her mom and dad around. Now we just have to make it to Christmas, then we get another week off!

Eye Doctor Update

Well, we have good news and bad news. The good news is that the doctor was able to examine Ella’s eyes and figure out her prescription. The bad news is that she did not cooperate and made the appointment as difficult as she could.

Over the weekend we made 2 “test runs” to the doctors office. We’d park and walk around outside the building and talk about seeing Dr. Jaafar. Unfortunately the building was closed for the weekend, so we weren’t able to go inside. When we got back in the car she would get a surprise. The first trip she got a big pink flower, and the second trip she got an Elmo and Santa book (thank heavens for the dollar section at Target). On Tuesday we made another test run and this time we did it as though it was her real appointment. We got to the building and went inside. We went up to the floor and sat in the waiting room for about 10 min. They even had an empty exam room that they let us visit. Ella sat in the big chair and we talked all about the equipment. Then when we got in the car Ella got some very special reindeer silverware. I think she was the most excited about this surprise and the rest of the day she talked about her surprise. We printed off a picture of the eye doctor from the internet and looked at it all week and gave it kisses and cuddles. And we played eye doctor with Elmo, doggie, mommy, daddy, and Ella. When Metti would leave each day we’d say that she was going to the eye doctor to get her eyes checked. While we knew that all of these we’re a guarantee that things would go well, we hoped that they would at least delay the crying when we had our real visit.

Wednesday morning we woke up and got ready for the doctor….and we prayed. The good news is that Ella didn’t freak out when we got to the building, and she even did pretty good in the waiting room. Of course once we got into the room and they needed to examine her is when it all went down hill. In Ella’s 2 years we have learned a lot, but the most important thing we have learned is that she’s a fighter. Her fighting spirit is what kept her alive when she was born, and it’s what keeps her going now. The problem is that this fighting spirit is also what made this doctor visit so difficult. Man…is this girl a fighter!

They got the doctor in to see us as quickly as possible, but nothing was going to help. Ella wasn’t happy. After a lot of fighting it came time to stop letting her control the situation and show her that this was not optional. I sat in the chair, wrapped my arms completely around her and braced her head against my shoulder. This child wasn’t going anywhere! As my mom said, I “Cowgirled up” to get the job done. I knew that this was going to result in some skin trauma, but we had to weigh the risks against the rewards, and in the end her skin would heal, but we had to leave the office with her eyes checked. So I braced her down and the doctor was able to do his job. She fought me hard! But soon, she learned 2 things…1) the doctor wasn’t going to physically touch her (as I’ve mentioned before, Ella is VERY protective of herself and doesn’t like anyone touching her) and 2) I wasn’t letting her go anywhere! While she fought the whole time, she did fight less as time went on. Thank heavens for an incredible doctor who was able to work quickly (I won’t say his name for privacy reasons, but he is ranked one of the best pediatric ophthalmologists in the country and we learned first-hand why). Our big 2 praises are that we were able to get a good reading of Ella’s eyes and that the only skin trauma was a small opening on her chin about the size of a pinky nail. Thank you all so much for your prayers! You will never know how comforting it is to know that people across the country are praying for our precious girl.

The end result is that Ella does need glasses…but we already knew this. She is far-sighted and the doctor thinks that we caught it soon enough that it will correct pretty easily with glasses. When we were leaving I was settling up with the receptionist and Joe and Ella were off playing. Joe came over to me and said that he had just asked Ella if she wants glasses and she gave a very excited “OK!!!” She knows that both of us wear glasses and she likes to play with our sunglasses, so they aren’t threatening to her. Then Joe asked her what color glasses she wanted and she told him PINK!!! I promise I didn’t prompt her to say this…although in my mind I already knew she was getting pink. The visit to the glasses place was smooth sailing. She tried on every pair of glasses they had and even got upset when I took them off of her. She is very excited about getting glasses. And this has given Ella’s mom and dad some incentive to go get their eyes checked and get new glasses. We’ve both had our glasses since college, so it’s probably about time.

Ella got all sorts of surprises for being a good girl at the doctor…she got a new puzzle and some Santa socks and some Christmas Tree and stars marshmallows and her favorite surprise was a big, huge blue balloon. She was a complete angel the rest of the day. Why do they do that to us parents? They throw a tantrum that takes us all day to recover from, yet they’re fine in 10 minutes. When we were driving home Ella was so excited to listen to “Christmas Tree Music.” She was singing along to songs she’s never heard before and was completely unphased by the whole eye doctor ordeal.

Joe and I are just glad it’s over. She gets her new glasses next week, so I’ll be sure to post some pictures. I know she’ll look adorable! And I can tell through the computer that you are wondering what these new glasses will do to her skin. The truth is that we don’t know, but I do know other EB kids that wear glasses and are fine. We’ll just have to make sure that she has some aquaphor behind her ears and maybe a little on her nose to keep the glasses from sticking. Other than that we’ll just hope for the best. If they give her problems…we’ll just have to cross that bridge when we get to it. But we're praying that she'll be fine.

Thanks again for all your prayers. We appreciate them so much and appreciate your devotion to our little girl.

We had a wonderful Thanksgiving that I'll post about later. Now you all get back to your Black Friday shopping!

A whole bunch of randomness

Is “randomness” a word? Anyway…I have to start off by saying that this week is the last FULL week of classes for Joe! HALLELUJAH!!! The next two weeks are partial weeks, then comes finals…then he’s done…FOREVER (I’ve threatened him within an inch of his life…he’s not allowed to take any more classes ever again). Both Joe and I are excited, but I think Ella will be the one who is most excited to have her daddy around more often.

I wish that everyone could see her at night when Joe comes home. He gets home around 10 pm (yes, we keep Ella up past 10pm…if we didn’t she’d never get to see her dad). She knows that when the phone rings that late at night that it’s daddy. So the phone starts ringing and Ella yells, “It’s daddy!!!” I talk to Joe on the phone for a little while, then Ella talks to him on the phone. When she’s done she hands the phone back to me and says, “All done.” The next several minutes are spent standing at the window. Eventually she gets bored and we go play, but as soon as she hears the click of the minivan alarm her eyes get huge and she yells again, “It’s daddy!” Then she stands up and waits for daddy to come inside. As soon as he comes in he picks her up and she starts doing this little leg kick butt shimmy thing that she only does when she’s excited. Now it’s off to the races. The next 30 minutes to an hour are spent with Ella and daddy playing puzzles, looking at their shadows, sneaking up on mommy, playing eagle (like airplane, but it’s called eagle after her toy eagle that the Eagles of MD gave her), jumping on mommy and daddy’s bed, sliding down the back of the couch, etc. They are constantly in motion until big, bad mommy comes in and puts and end to all the fun and uses that terrible word…bedtime. After some tears and mellow TV, Ella eventually calms down and goes to sleep. She and her daddy are the best of friends. She’ll be so glad to have more playtime with daddy…and I’ll be glad to get her in bed at a reasonable time.

Thanks for all your prayers for Ella’s eye appointment…and please keep praying. Her appointment is Wednesday November 25th at 8:45 am (EST)…that’s 6:45 am for all my Wyoming peeps. Joe and I have taken several steps to hopefully make this next visit go much smoother. Both doggie and Elmo have been to the eye doctor numerous times. And when we return from the eye doctor I tell them how wonderful they did and what a good doggie/monster they were and that because they were so good they get a piece of chocolate. Ella and I have also started playing eye doctor. First I examine her eyes, then she examines mine. To top it off I went to Target and spent $10 in the dollar section on items to use as bribery. This weekend we have plans to drive to the doctors office and walk around, then when we leave Ella will get a special treat. While all of this may help the situation, the only thing that will really work is prayer…it’s going to take an act of God to keep her calm and cooperative during the exam.

It has been brought to our attention that the Federal Government is in the process of starting their Combined Federal Campaign (CFC). This is when federal employees are able to designate a certain dollar amount to be taken out of their paychecks for a year and given to a designated charity. They can also do a one-time donation if they want. Each charity is given a specific code and this code is used by the employee on the CFC form to designate what group they want their money to go to. For all you Federal Employees who donate each year, we would love for you to consider donating to Debra. They are listed in the catalog under their full name, Dystrophic Epidermolysis Bullosa Research Association of America, and their code for this year is "11990". As you know, we really appreciate all that you each do for EB and for Ella.

I guess that’s it for my random post. I hope you all have your Christmas shopping well underway and are excited for Thanksgiving.

Start Praying Now

This morning Joe and I took Ella to the eye doctor. When we were in Cincinnati in July the ophthalmologist said that Ella is far-sighted, but at that point she wasn’t showing any signs that it was causing problems, so he decided to leave it alone and re-evaluate her next year when we go. Unfortunately, since then we have noticed that her right eye is crossing. Since both Joe and I wear glasses, we decided to have this checked out sooner rather than later. This morning we headed to the eye doctor here in Virginia. I knew it wasn’t going to be a good visit…doctor visits rarely are with Ella. So I started praying last night that she would stay calm and let the doctors do what they needed to do. In July, thanks to all the prayers that you sent up for us, Ella was a rock star during her eye exam. She did exactly what the doctor wanted her to do, which was why we got such a good evaluation of her vision. Today…that was not the case.

This was the first time any of us had ever been to this doctor or office building, yet as soon as we pulled up Ella knew that we were at the doctor and she started crying. She kept asking to go back to mommy and daddy’s blue car. We made it up to the office and got her settled down by reading books and coloring, but as soon as we went into the exam room all hell broke loose…and that’s an understatement. She screamed the whole time. They tried to get her to look at toys and she wouldn’t cooperate at all. They turned on the TV and she still cried. They gave her a lollypop…nothing.

After I talked with the doctor and Joe occupied Ella, we were supposed to go into another room where a nurse could put drops in Ella’s eyes to dilate her pupils. If things were bad in the exam room, they got even worse here. Arms flailing…screaming…3 adults trying to hold her down…Ella kept crying out, “Ella all done! Ella go in mommy and daddy’s blue car!” The straw that broke the camels back was when she was trying to avoid the eye drops and she rubbed all the skin off of her chin. At that point we decided that this wasn’t going to work today and we needed to head home. They called the doctor back in and we talked to him. He was very understanding and is willing to squeeze Ella in for another appointment next week.

Joe and I felt like we had gone 10 rounds with Mike Tyson. We were emotionally beat up and physically exhausted. We both wanted to crawl into bed and cry. I was embarrassed, scared, sad and frustrated all at the same time. Since the appointment we have been racking our brains for a way to make next weeks appointment go smoother than it went today. So far our plan is to “visit” the office a couple of times this weekend. Our other plan is to bribe her…yep, I’m thinking chocolate.

The issue we’re facing is that this is not something we can put off. If her eye is crossing in and we don’t take care of it now, it’s only going to get worse and will potentially affect both eyes. This will result in even more severe problems in the future. We must have her eyes looked at now…and Ella must cooperate in order to get a good reading on what is wrong.

So I’m asking now, 9 days in advance, that you all please start praying for next Wednesday at 8:45 am. Please…please…please pray that Ella will be calm enough to let them get a good assessment of her eyes. Please pray that she’ll cooperate and look at the little light and do all that great stuff that they need in order to determine what prescription she’ll need. Just please pray.