My mom and I. The eighties. In college in Pennsylvania I used to wear a Frankie B. winter coat that was waist length, bright orange with stitched hearts and lined with faux fur. It was the coolest. I gave it away after reading that Marie Kondo's minimalist book and instantly regretted it. To pair with my impeccable college fashion sense, my sophomore year college boyfriend drove a red sports car and only wore button down Ralph Lauren shirts. Fashion sense aside, he could als
Here are some things we've learned this week: 1. Contrary to what I always believed, it is possible for a stomach bug to last for seven days. And it is the pits. Seriously. 2. I love tv but I don't ever want to watch The Amazing Race episode where they pick the teams that Emily has been watching on repeat while sick ever again. 3. I would last three days on The Amazing Race. Tops. Paul has already said he would never be my partner on it. 4. Marian is a 6 on the NPC scale out
Today we woke up with a start at 1:30 a.m. Marian coughed in her pack and play and Paul and I had the same thought, please don't throw up. We unknowingly brought a stomach virus with us from California, and throwing up is not allowed within 24 hours of the treatment because of the anesthesia. The possibility of being so close to her first treatment and having it delayed - even by one day - felt like it would be a crushing defeat. It's irrational but it feels to have something
I have been taking something major for granted - and that is that Marian can get access to cyclodextrin. We haven't even started treatment yet and already my mind is racing about how we will make it work, how difficult it will be to do this every two weeks forever. I've grappled with the anticipated pain of watching Marian be put to sleep and poked over and over again, and I've mentally been exhausted at the idea of flying back and forth to Chicago when we haven't even made a
We were so fortunate this morning to interview with the wonderful Darsha Philips and ABC7 to raise awareness for our Marian and Niemann-Pick Type C (NPC). For more information about NPC and our story please check out: www.gofundme.com/hopeformarian www.facebook.com/hopeformarian www.instagram.com/hopeformarian and this website, too! We'd love for you to follow our journey with our sweet Marian and family as she is in the fight for her life.
This week. So glad it is almost over. We went to the hospital for appointments three times this week, which was about two times too many in one week. A feeding evaluation, swallow study, and a half day neuromuscular clinic appointment. Tuesday was the feeding evaluation with a lovely speech therapist. I got there, parked, strolled over just five minutes late (not bad), and it all went smoothly. It was nice to watch her laugh and play during the evaluation. Thursday was anothe