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This year, due to our crazy start, we had a nice family dinner on her actual birthday, but decided to postpone the celebration until the spring. Lorelei can receive a “fun cake” every year for her birthday, but one year she will receive a “dream cake” that is a three tiered, fancy, carved cake! And, while it may be minor to most families, at her party, for the first time ever, Lorelei had food (hot pink icing) on her hand and moved it to her mouth on her own!! I have learned more from my nonverbal, non-walking-crawling-sitting, 2 year old toddler than I learned in 13 years of sales and marketing in the home warranty industry, 9 years as an event planner, 4 years as a restaurant owner, 4 years of college and all the schooling that came before it.

… Definitely nothing compared to a day in the PICU, but just a normal rough day as a rare-disease mom. There is a treatment and it will make her stronger, fix her random lab values and finicky organs, give all of you a better quality of living as well as a give you a break from the abnormal mental stress you go through on a daily basis. I write to get things out of my head and to give everyone who follows our story and prays for our family, a little window into the life of parenting children who are rare, who have special needs and who battle life threatening conditions. With a glass half empty of wine (only because I already drank the other half), Lorelei’s mommy…

we are thinking about ya” cards while the other half were birthday cards. cards mixed with Happy 2nd Birthday cards? It’s not fair that she has more doctor friends than two year old friends. It’s not fair that, when she turns two, she is now officially in that 2-5 year range when research says most of these kids have passed away.

Thank you again for your love, support, prayers, messages, gift cards and stuffed animals, cleaning and lysoling my house before I got home, taking our doctors calls while you’re off on vacation, caring for our pets and everything else. My mom, Lorelei’s grandma, spent the last month in Florida with us, my dad and sister flew down after Lorelei crashed and was intubated, one of my best friends spent the first weekend with us instead of on the vacation we had planned in the Keys, another bestie drove 6 hours just to come be with me and cry with me. Oh, and literally five minutes after we walked in the door, Disney called and offered us a seven day vacation when we are ready and able to come back! It will take some time to adjust and heal from the trauma we experienced over the last few weeks, but we will, one day at a time.