Off To The Fundraiser
Hi all – quick update as Nicole and I are just about to leave for tonight’s fundraiser at McFadden’s. Sally had a very good day, she had better color and more energy. The boys and I took her to the playground with them pushing Sally in the stroller. Not sure who enjoyed it more as […]
Sleepy Baby
Hi all – According to Nicole, who was home with Sally, she was very sleepy and didn’t have much energy all day. Even during the brief time I saw her this morning, she just wanted to lay on me. Sally had a bit of a reaction and was rubbing her eyes, so Nicole gave her […]
Heading Home
Hi all – I went back and re-read what I posted last night…yeesh, holy mess. I literally fell asleep a couple times while writing it, I’d wake up and see a long line of whatever letter my finger was resting on when I nodded off. Looks like I forgot to delete one of them, […]
Birthday Girl
Hi all – Our day started early. Nicole and I got to bed after midnight last night, I had anxiety sleep so woke up every 20 minutes. Nicole got me up just after 4am as Sally was awake and we couldn’t feed her to put her back to bed since she was having surgery this […]
Stresses Pre-Surgery
Hi all – Sally is scheduled to undergo a 2 hour surgery tomorrow morning at 7:30am to insert a permanent feeding tube into her stomach. Since tomorrow is also her birthday, and she’ll likely spend the day recovering, the folks at MSK celebrated it with her today. Scarlett and her mom Shannon surprised Sally […]
Back to Reality
Hi all – as I closed with last night, Nicole and I got a brief break this weekend, but now it was time to get back to reality. I’ve got a lot of photos today so am going to include as I write, so bear with me here. Speaking of the weekend, check out the […]
Katie Couric Show
Hi all – One of William’s teachers, Marie Sidoti, submitted Nicole’s name and story to the Katie Couric Show for a makeover. Turns out she was selected, and yesterday a camera crew came to our home and followed Nicole and her friend AnnMarie throughout an exiting evening. A private car whisked them to Manhattan where […]
Superstar Sally
Hi all – Sally had a good day, although not as much energy as yesterday. Nicole had to work, so I spent the day using the feeding tube to push milk into her manually. Sally threw up last night and this morning, so we took it slow and gradually increased over the day as her […]
Feeding Tube – Day 2
Hi all – Barely seeing Sally for a couple days, I was surprised at how well she is doing as I finally got to spend some time with her today both before and after work. She woke up early this morning, and Nicole was nice enough to take care of breakfast for the boys so […]
Feeding Tube
Hi all – Sally was back at MSK today for a spinal tap as well as a bone marrow biopsy to determine if she remains in remission. This is the point in the month where we’re holding our breath and have to usually wait a week or so for results. Doctors fully expect Sally to […]