It was supposed to arrive at 8:30 this morning. 8:55 Got a call it wasn't there but should be by 10:30. I hurried myself to the gym to Liz's spin class to pass the time. Thank you Mark for being home with napping Annie and Ruby who didn't want to come with me. 10:05 got a call the drug was there so I took a quick shower, called Liz to arrange help with Annie, and got going.
The new drug is taken daily, orally, usually in capsules, but since Ruby is young and not a pill-swallowing expert, we'll break open the capsules and mix with a spoonful of yogurt, applesauce etc. Her port access went well this morning, but because of how the tape was put over it, it seemed so uncomfortable to her. She kept saying it hurt and was wiggling. She was very subdued. She cried. I cried because she cried. Lots of snuggling and waiting.
Got the EGC and labs done and pills, yogurt, paperwork all ready. It was uneventful but a little intense at the same time. She said it just tasted like yogurt (I was worried it may have a bad taste). After she had some more to eat she perked up and had more energy. She had a blood draw at hour 1, 2, 4, and 6 after she took the medicine. An ECG at hour 4. We walked to the outpatient building to see some sunshine. Visited the Ronald McDonald Family room for lunch and a snack. Walking around the hospital handing out a few toys we'd brought with us. The look on Ruby and the kid receiving the toy was JOY. That was one of my favorite things from today. It gave us the chance to meet some new friends, wish people Merry Christmas, and bring a smile to all of us.
Ruby watched a My Little Pony Christmas show and Monsters Inc. Played a little Uno and took inventory of everything in the gift shop. It started out a hard morning and ended up in gratitude. A childhood friend of mine came to visit toward the end of our time there. The clinic was quiet as most people had left. She brought her new baby that I could just stare at all day. Loved the company and visit since its been a long time since we'd seen each other. Ruby fell asleep before I'd even left the parking lot. Mark was at an event for work, but I came home to a baby all bathed, in jammies, and ready for a bottle. A friend had dropped off dinner. Thank you Liz, Amy and Julia! I put Annie to bed, got Jane in the bath. Ruby just wanted a smoothie. Mark got home and we had some dinner together and got the kids to bed.
Now to put me to bed :)
Ruby picked this out for me to wear today
zonked on the way home
found about 20 of these on my phone
new friends
1 comment:
Ali, thanks for your updates and for letting random people like me follow your journey. Your family is in my thoughts and prayers. I hope Ruby is able to have a good week and make it to all of her events.
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