Monday, November 30, 2009
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!
Friday, November 27, 2009
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!
Thursday, November 19, 2009
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.
Monday, November 16, 2009
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.
Monday, November 9, 2009
We had another great weekend! Friday afternoon I came home from work early so that I could take Ella to get a flu shot. I had to make an appointment through the hospital several weeks ago. Everything was set up in a big auditorium. We got there and signed in, and much to Ella’s surprise, they had mini 3 Musketeer candy bars. I grabbed one and headed down to the front of the auditorium to get our shots. Ella dug in to the chocolate pretty quickly. The nurse gave me the shot first, then came Ella. We put the chocolate down during the shot, and of course Ella cried. The second it was over she said through her tears, “’More yummy chocolate.” Then took a bite and she was fine. We had to hang around for 15 minutes, so we just sat and colored and finished up the chocolate. She was a trooper for the whole ordeal. When we got in the car she was asleep before we even left the parking lot. After we got home I just sat in the car with her so she could get a good nap in. It’s amazing what parents will do for their kids…like sit in the car for an hour. The great news is that the flu shot made her sleepy, so even though she took an hour nap, Ella still went to bed on time and SLEPT
Saturday morning Joe had some school work that he had to get done, so it was just Ella and me hanging around the house. We stayed in our pajamas until . Saturday night we headed to
There is no way I can begin to tell you all the things that Joe and I have come to love about this group. In fact, every time we visit we grow to love them even more. The meetings aren’t just meetings…they’re fun. It’s obvious that they really have a good time when they get together. One of my favorite things is that if someone gets up to speak and they don’t introduce their spouse, they have to pay $10. I love it! The people are so welcoming and kind-hearted. We instantly fall in love with everyone we meet at the meetings.
On Saturday night Joe, Ella and I were invited, once again, to join the Eagles for dinner and a presentation. They have been working hard to raise money for Debra and on Saturday night they were able to present Mary Sprague, Executive Director from Debra, with a check for $5,000. They are still working hard to raise money for EB and will continue to do so throughout the year.
The dinner was wonderful…turkey with all the fixin’s. Ella was less interested in the turkey and more interested in the leaf cookies that had been dipped in chocolate (she's a chocolate girl...I can thank Metti for that) and the cake. Of course we had to sing Happy Birthday several times while she was eating the cake. After dinner and the presentations came the best part of the night and the reason for the title of this post. They had a band…and the
Ella made this special video as a thank you to the Eagles.
Wednesday, November 4, 2009
“Uh oh…Ella tooted!” Yes…she actually says this.
“Oh no! Daddy got a boo boo!” She says this in a very sympathetic voice…she’s obviously very concerned. She also asks us to draw boo boos on pictures when she’s coloring or we have drawn mommy or daddy or have traced her hand.
“Baby’s sad…she needs her mommy.” This is said every time she hears a baby cry, whether in real life or on TV.
While talking on her pretend phone, “Hi Mommy. Hi Daddy. Hi Boppie.” (Long pause) “Hi Mom. Hi Dad. Hi Bop.”
In a very low voice, “It’s cold mommy.” Then she dies laughing at how funny she is.
And everything…and I mean EVERYTHING is a mommy, daddy or baby depending on if she thinks it looks feminine, masculine, or childlike. She’ll see a big black SUV and say, “That’s a daddy car.” Or she’ll see a little dog and decide that it’s a mommy doggie. And girls always have long hair…boys have short hair…at least according to Ella.
Ella’s most recent favorite songs are: Lullaby (the traditional lullaby) and Happy Birthday. Happy Birthday is sung numerous times while we celebrate various birthdays, including mommy, daddy, Ella, Grammy, GiGi, Paw Paw, Boppie (Metti), Fracesca and Francesca’s mommy. Sometimes even stars, drums and other objects have a birthday. And Happy Birthday is sung while Ella and I play her xylophone and drum.
Ella’s new favorite thing to watch is “The Ella Show.” She sits on the computer desk and we look at videos of her as a baby. She was very cute…and she knows it. She also loves looking at pictures of Santa. I’m trying to prepare her for Christmas so that she’s not scared when he comes to our house.
That’s about it for Ella’s new tricks. She’s learning a lot in Boppie’s language (whatever they speak in Ethiopia…I can’t remember the official name). She can count to 10 and knows the words for hot (temperature wise) and beautiful. And she’s learning eyes, mouth, nose and ears. I told Metti that she has to stick around at least until Ella’s 18 so that she can be fluent in Boppie’s language.