You may remember this post from last year. Well, this weekend, almost exactly 1 year later, we were able to go back and visit the Eagles of MD again. When Ella was born, this group sponsored a CD that Jenni (my BFF) recorded to raise money for Ella. Last year we went to their meeting to thank them for the donation. In return, do you know what they did? They took up a collection for Ella to celebrate her 1 year birthday! This group is wonderful!
So this Sunday they had the official changing of the presidents (I don’t know what the technical term is). Every year the new presidents (1 man and 1 woman) choose a charity of their choice and the Eagles work all year to raise money for those charities. Well, this year BOTH of the presidents, Paul and Helen, chose Debra and EB as their charities! Isn’t that awesome! Joe and I were so touched by their generosity. They have such wonderful hearts that they want to help Ella and other kids with EB. They are making their symbol for the year a butterfly and they even had pins made that have a little butterfly on them made to look like an E and a B (it’s hard to explain so I’ll post a picture of one so you can see).
On the way home Joe and I were talking about their generosity. I have to be honest, I had never even heard of the Eagles until Jenni told me about them. What I will say is that in the 2 meetings we’ve attended, it has been evident that this group is full of the most genuine and kind hearted people. They are so friendly and welcoming. You know how you can walk into a room and immediately get a vibe for how things are going? Well, the Eagles give off a good vibe. And what Joe and I appreciate most is that they aren’t just SAYING that they want to help, they are actually DOING something to help Ella and other kids with EB. They are putting their words into action. We are so grateful to the Eagles for all of their help and we look forward to visiting again next year.
After visiting with the Eagles we headed home. All day Ella had been asking for one thing…ice cream. We put it off the entire drive up to MD and we put it off the whole time we were there. We’d say, “Can we get ice cream when we get home?” And our sweet little girl would say, “Ok, ice cream at home.” She’d be fine for about 10 minutes, then ask again. The good thing is that she never threw a tantrum for it, she would ask very nicely and was very patient when we told her she’d get it later. On the way home from MD she asked for it once again and Joe said, “She’s been so good today that I’m going to stop and get her some ice cream.” So we pulled over to McDonald’s and Ella got a Hot Fudge Sundae. She was so happy with her ice cream, although she wasn’t to keen on the hot fudge. She even shared some with mom and dad.
Joe decided that as a treat we were going to go to Hana Tokyo, a Japanese Hibachi restaurant near our house. This is one of our favorite restaurants, but we have been afraid to take Ella since we didn’t know how she’d respond to the fire and sitting at a table with strangers. What we did have going for us is the fact that Ella LOVES fried rice, so we knew there’d be something that she’d eat. Luckily she did great! Every time the fire would flame up she’d say, “Woah! Hot…WERY hot!” She ate almost all of her fried rice and even enjoyed some of Daddy’s chicken. She wasn’t willing to try my shrimp or scallops…which was fine by me!
Wednesday we leave for Cincinnati to have Ella evaluated by a team of doctors. We went last year and had her genetic testing done. This year is more of a follow up. We want to keep a record of Ella with their hospital in case she needs a medical procedure in the future. This is also a good place to visit because while we love Ella’s local doctors, it is always good to get her evaluated by doctors who work with other EB patients. I do have one BIG prayer request for this trip. Thursday is appointment day, so starting at 8:00 am Ella will meet with the Ophthalmologist, then at 11:00 am she’ll meet with the Dentist, and at 1:00 pm we’ll go to the EB clinic where we basically sit in a room for a few hours while various doctors come in and out and talk with us (last year we met with 11 doctors). During the clinic time we will also do a complete bandage change so they can take pictures of her wounds. This all makes for a very long day. I am completely dreading Thursday! Ella is so shy and very leery about strangers touching her, so I just know that this is going to pose some major problems for her evaluations.
Please pray that Ella will be less shy than usual and that she will allow the doctors to evaluate her as they need to. Please pray that Joe and I will keep a calm attitude in the room (which will reflect to Ella) and that the visits will go smoothly.
I am so nervous about the visit. Not so much about what they’ll say about Ella and her skin (we think she looks pretty good), but more about how she’ll respond to all of these strangers staring at her. The last thing we need is for her to flip out while we’re in the room. In filling out her paperwork I even put a “special note” about how shy she is and that the doctors should be prepared for it.
And one more thing…please pray that Ella will eat while we’re there. Last year she didn’t eat anything the entire day of her appointments. This year that would just make the day even worse (at least last year she still had a bottle). Anyway, if you all could keep those 2 things in your prayers for Thursday I would really appreciate it. Thanks!
The best part about going to Cincinnati is that Joe’s sister, Mo, and her family live only a few hours away. So we get to spend some quality time with them while we’re there. I’m glad that Ella will be able to hang out with her cousins, Alice and Edie (who is just 6 weeks older than she is) for a few days. I think we’re going to visit the aquarium! Fun times!!!
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