Hope your summer is off to a wonderful start. It is hot and sunny every day now in Philadelphia and we are LOVING it. We’ve been going on family walks around the neighborhood in the evening with Daisy in her stroller and the dogs trailing behind - it’s my favorite time of day. Occasionally we stop at the local ice cream shop which is coincidentally named Little Baby’s! Daisy loves being outside. When we get to the dog park I like to take her out of the stroller so she can feel the breeze on her face - she seems to love it. She also really loves sunshine - she stares out the window in whatever room she is. We are reading together many times a day and Daisy enjoys being read to (with a pacifier - she’s too squirmy & distractible without one right now). Current favorites include Miss Rumphius, Goodnight Moon, Eloise in Moscow & anything by Doctor Seuss.
This past weekend we took our first family trip (including the pups) to Princeton, New Jersey, a lovely little town an hour from Philadelphia built up around the famous Ivy League university.
Daisy was a terrific traveler - she slept beautifully in her boppy in the hotel, she slept through every car ride & she behaved like an angel in restaurants and on walks through downtown. The Moby baby wrap is probably the best thing we’ve invested in - it’s nice and soft and conforms to baby’s body. Nick runs hot so she can just nestle into his warm body and sleep. If you know anyone with a newborn, buy it for them! It's the best!
We stayed at a hotel with a pool and Daisy seemed to like having her toes dipped in the water - a good sign of what we can look forward to on vacation in Maine later this summer. It was really, really nice to get away from the noise and busy-ness of the city, our endless “to-do” list and our partially-renovated home… And just be somewhere quiet. I read by the pool, Nick watched sports in the hotel room, the dogs got to run, we ate lots of good meals, we loaded up on books at a great toy store and came home to Philly feeling refreshed.
On Tuesday we had a feeding evaluation at Jefferson Hospital where they watched Daisy try to feed orally and took extensive notes on how she struggles to breathe and swallow. Next Wednesday there will be a subsequent swallow study where they will feed her Barium, a powder that thickens water to form a milky white substance that visibly coats the pharynx and esophagus so swallowing and the inside of these organs are visible on X-ray. Radiologists will use a fluoroscopy (a study of moving body structures using a continuous X ray beam passed through the body part being examined) to show how the barium moves through the pharynx and esophagus as Daisy is fed by bottle.* Next week we also have a follow-up meeting with Daisy’s neurologist.
In the meantime, we have heard back from the Jefferson Lysosomal Testing Lab and the testing for Niemann Pick Type C was NEGATIVE! We are absolutely over the moon about this - it is one of the most horrific, merciless ways to live (and eventually die) that either of us could imagine. The more Nick and I read about this disease, the more our hearts broke for the amazing families who care for loved ones who are affected by it. We still want very much to do something to help these people. We have been praying for a negative result for months now and God has answered our prayers. And YOUR prayers.
We know so many of you are still praying for us and for Daisy and I really believe that means something so huge - thank you for keeping us in your thoughts and hearts. Thank you, thank you, thank you.
*Had some help explaining this from the Johns Hopkins Website.