This was truly the best weekend ever. We were surrounded in love with our family and enjoyed celebrating a big event. L and I will be releasing an update on our YouTube channel on Tuesday to tell you the big news. We hope you are subscribed to our channel so you will get the notification when the video goes live. God is so good and we are giving Him the glory for this great news!
As you all know, my youngest daughter L has a rare disease. She amazes me with her strength. I’m going to be real and honest. I don’t know if I could live on a prescription formula. L shared how she deals with her chronic illness in her latest video. Hope you will take the time and watch.
Dogs are a great medicine for our sweet L. She is a huge animal lover and her heart beats very fast when she is around dogs. The love and compassion she has for dogs is amazing. Dog therapy is truly the best medicine for her. We had a big clinic day yesterday at Children’s Hospital and our friend met us at a nearby park with her dogs. This helped ease L’s anxiety and just seeing her smile ear to ear, warmed our hearts immensely.
In addition, on our recent trip to Florida, we stayed with family part of the trip and they have two boxers. L was over the moon during our entire stay. This picture will now be framed in her “dog” room.
Dogs speak her language and help her cope. She can be having a bad day and our medicine is to immediately bring up dogs to her. She can sit for hours and tell you how to train a dog. Her future goal is to get a puppy, train the puppy, and have it be registered as a service dog so she can take the dog to Children’s hospitals. I feel she will accomplish this goal in the near future.
Enjoy her video and please continue praying for a cure!
I’m not trying to be rude. Honestly, the tooth fairy is welcome in my house but it was made clear last Thursday that she will not be visiting our house anymore. The exchange of words between my daughter and I brought tears to my eyes. My daughter leaped from my bear hug to grab a pencil. She was eager to write a letter to the tooth fairy for the last time. What did I do? I grabbed my iPhone to take a picture so I could document the moment. Then, I fell into my pillow to shed tears.
As I laid there in my pillow, I thought back to this moment 11 years ago when my daughter’s first tooth finally popped through her gums. She was a late teething baby and I remember the moment clearly when that little white tooth finally popped through the skin. L and I danced around for what seemed forever. Happy tears were falling from my face. Fast forward 11 years and I am crying again because all those little baby teeth that finally came through the gums are long gone. She will soon have all her permanent teeth.
Isn’t it crazy how milestones come full circle? The tooth fairy was the last bit of childhood that I was clinging to before both of my beautiful girls leap full force into their teenage years. Long gone are the days when I would be awaken to the sounds of the girls squealing in delight about how much the tooth fairy had left them under their pillow. By the way, the tooth fairy has really inflated her surprised. 50 cents has now turned into $5.00. Parents with toddlers may want to make a mental note.
L will always be my baby girl. It is a fact of life that she is growing up. It is cliche, but children really do grow up too fast. I’m off to go hug my girls tight. They will always be mommy’s girls!
Our matching bracelets from Keep Collection are my favorite. It is our daily reminder to never give up hope on a cure.
We survived the holiday season. I didn’t bake any traditional Christmas delights or any Christmas meals. We focused on spending time together as a family and remaining positive. We are coming up on a year of L’s initial food impaction that led us to her diagnosis of eosinophilic esophagitis.
I wasn’t quite sure how we would make it through the first year, but we did it with God’s strength, prayers, and encouragement from friends in the EoE community. Going into this health journey, my mind was swirling with so many questions. Now, I am able to help other families. We obviously do not have all the answers as L has yet to confirm her first safe food. She has her fifth scope this Thursday to determine if we can for sure say pears is a safe food. Going into this scope, I’m remaining positive that she is going to have a clean scope. L has not had any major reactions or symptoms, so we are believing this is going to be a good news scope.
Food trials are hard. You get into a safe zone of no symptoms and want to just stay there because of fear of adding new foods and the symptoms return. Our goal is to try and add more foods this year. L has tried a couple foods but didn’t really make it past day 5 or 6, so her allergist confirmed we should just stick with one food trial at a time instead of trying to double up on foods. The sad news is a endoscopy has to be used each time to confirm or deny a safe food. Hopefully with research this year, there will be an easier way to check on the esophagus. Each time L has an endoscopy, she has to be put to asleep so you can imagine her anxiety about scope days.
We will let you know how the scope goes on January 12 and figure out which food we will trial next. L has almost lived on a prescription formula to keep her alive for a year. My husband mentioned to me tonight, he doesn’t know how she continues to drink the formula (usually 7 to 8 boxes a day). The formula does not have a great smell, but with her endurance and strength, she drinks to boxes.
I continue to say she is a such a strong and brave child!
Have you heard the exciting news? Your little one can now be proclaimed a Princess at a character greeting or Princess dine location at Walt Disney World or Disneyland. This will be a very memorable moment for your child. My girls still talk about their Bibbidi Bobbidi Boutique Experience at Disney World.
“My Storybook Moment-Princess” lets guests become royalty through a new gifting experience at Disney Floral & Gifts that includes royal treasures and a personalized proclamation, but it’s unsigned. Simply present the declaration to a favorite fairy tale princess for signature and become part of the royal court!
To learn more, check out My WDW Storybook Moment-Princess (407-WDW-GIFT) and My DLR Storybook Moment-Princess (717-781-GIFT).
My Storybook Moment is also available in other beloved characters and themes, such as Mickey Mouse and Minnie Mouse (including a “Best Friends” lanyard and Mickey Mouse or Minnie Mouse Ear Hat), Sheriff Woody (including an official cowboy hat, bandana, and sheriff’s badge) and many more.
