I know everyone is wanting an update on Abby since she had clinic today, so here we go.....it might not be too long, I'm always tired after clinic days, but it will keep you updated!
Clinic was so good!! Abby's echo looked great, her white blood count is finally almost up to where it should be, her levels are all good.......no problems!! What a relief that is. They wanted us to go back in 2 weeks, but that ends up to be on Memorial Day, so we're going to go the Thursday before, the 24th, which is also Abby's 13th birthday!! I'm sure that there's no where she'd rather be on her birthday than clinic :) Then we'll go back again on June 8th for annual cath/biopsy. Abby and I both felt great after leaving clinic today, we were as happy as could be. We visited with some of our transplant friends for a while, then we had to meet with some people from PCMC and KSL. Abby is going to be featured on their telethon coming up on June 2nd. They had Abby write her story, then they recorded her today, telling it. During the telethon, they'll have Abby telling her story while they show pictures of her. Abby, of course, loved doing it and sounded as cute as ever! They know that we are willing do anything for PCMC, everyone there has always been so good to us. We felt honored that they chose Abby to participate. So, June 2nd, from 7-10:00 pm, plan on seeing it!
Now comes the not so good news. After that, we talked to Abby's GI doctor. Her food allergy panel she had done last week, came back negative; But, they think that Abby's immuno-suppressants are masking the allergies, so we are moving on to the next step. For the next 2 weeks, Abby has to be on a food elimination diet. She can't eat foods that contain cow's milk, soy, wheat, eggs, peanuts or tree nuts, and seafood. After the two weeks is up, we will slowly introduce these foods back into her diet to see what triggers the allergic response. Hopefully, it will only be one of these foods, so it will be easy to eliminate long term, but it could be more than one, it could be many things. I'm worried about the next 2 weeks, Abby is picky already, and it's going to be hard to find foods for her that don't contain the foods on the list. Abby thinks it's going to be easy, because her eosinophilic colitis makes her so she never has an appetite, she never wants to eat anyway. she'll just be glad to not have a stomach ache for a while. If after 2 weeks she's still having her stomach problems, then it's not a food allergy and we'll go to the next plan. If any of you have some good food ideas for us for the next 2 weeks or so, please let me know, I need all the help I can get!!
Thursday night is going to be a great night! Yes, Utah! Organ donation, is giving the 4 staff members from our school that saved Abby's life last year when they did CPR, the Yes, Utah! Award. I'm excited, and I think they deserve it more than anyone else I know!! Without them, Abby wouldn't still be here. I'll take pictures, it's going to be a sweet night.
Friday, as you all know, is May 18th. Last year on May 18th, our lives changed forever.......this year, we are getting out of town. My kids and I are taking the day off and going to Las Vegas!! We are just going to have fun together. I know that many of you don't understand why dates matter, what's the big deal, right? What's the chance of something bad happening on May 18th again? This would have been my thinking a year ago too. Until you've lived through a traumatic experience, I don't think that you can understand the whole "dates" scare. For those of you that knew us last year, just think about how you felt when you heard about what happened to Abby that day, now intensify it 100 times, that's how we feel, we were the ones living it. You can't help but to feel those things again as the date gets near. I find myself thinking, "last year at this time, we were just a normal family that had never even thought of heart problems!" I already know that many of you have been thinking a lot about it, because in the past 2 weeks, I've already had many people tell me what they were doing when they heard, when they got "the call." I've relived the experience so many times, it's just something that people with post-traumatic stress disorder do, and I believe that my kids and I all have a little bit of PTSD, and that's okay, in fact, it's probably expected. I also know that some of you think that I should think of May 18th as a good day, Abby's life was saved that day! And I do, I know it was a good day, but it was also the scariest, hardest day of my life, it was the day I recieved the phone call that no parent wants to receive......ever! It's going to be a hard day, for my kids and I, but we are going to do everything we can to fill it this year with positive, fun memories. We're going to make the most of that day, just like we try to do with everyday now. Because of May 18th, 2011, we know that everyday is a gift and to live it to the fullest, and that's exactly what we intend to do.