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.