We are so relieved to be home. And so grateful for the help we’ve gotten to get back here and get settled back in.
Yesterday Lily’s dad met us at the hospital and sherpa-ed us through the snow storm to our apartment. I do not travel lightly with these hospital visits. Pillows, blankets, blenders, food – you name it, I bring it. We had a lot of luggage.
Once home, John started working on Lily’s hair while I started unpacking/doing laundry. He left shortly thereafter. I put Lily in the bath. Washed her hair three times, scrubbed her down, got her all clean.
Then I jumped on a conference call with other Rett mommas to talk about fundraising strategies. It was a great way to wile away an hour of combing out Lily’s knots. But alas, her hair defeated me. EEGs and long hair do not go well together. I got through about half of the tangled mess.
At 5:30pm the doorbell rang with hot food from a wonderful Italian restaurant, courtesy of Beverly Salerno. She just did it. Food just showed up. Like magic. It was an amazing gift.
Stephen (my wonderful boyfriend of many months) came over a little later with wine and groceries. He set up our dinner while I fed Lily. Then he watched her so I could finally shower off the hospital germs. I’m quite the germaphobe for those unaware.
After I put Lily to sleep, we ate. It was delicious. I fell asleep on the sofa afterwards and when I woke an hour later, Stephen had done my dishes and finished the laundry. It was like waking from a dream!!
Today Lily and I are recuperating. Lily continues to have her ups and downs. Sometimes she walks well. Other times she can barely stand. We have quite the road ahead of us. But soon enough we will be climbing those hills again.
Playing dress-up yestersay while waiting to get discharged
Visiting with Urzsula and Shamekia earlier today