So sorry for the lack of updates. We have been busy, to say the least.
We are now officially back in Philadelphia! Both born and raised in Philly, Val and I had been in the burbs for 8 years or so. Most of our family is still in Philly, as is CHOP, as is Val's work. It made sense that we should come back, so we sold our house and now are back to being city mice. Due to a very last minute screw up with our mortgage on our new condo, we are squatting in Val's parents' house for a week before our settlement happens this Friday. I will say that the one week reprieve between packing up and unpacking is much appreciated. For the first time in months I don't feel extremely rushed or panicked about needing to do something (aka, packing up the house). Getting the house ready for settlement (while caring for a clingy, medically needy toddler) was just as hard as I thought it would be.Thankfully, it's over now. Originally apprehensive about moving back to the city, now that I am here, it feels like it absolutely was the right decision. I am looking forward to making our new condo "home".
As for Samantha, she is doing great! She's walking better than she ever has. She's talking up a storm. She's 30 lbs now (she was 22 lbs in February) and we've needed to cut back her tube feedings. In fact, she's eating so much by mouth that I wonder if at some point we will need to greatly reduce the tube feedings. Sam is off of the vent all of her waking hours. And, we got permission from her pulmo last week to try a nap or two without the vent to see how she does. Val and I are nervous about doing too much too soon during this time of transition for us. However, once we are settled into the condo we will definitely try to see how she does off of the vent while sleeping. At this point the pulmo isn't even sure she needs the vent at all.
She's come such a long way in just a short amount of time. It's been amazing. The more she improves, the more I am convinced that the study drug has something to do with it. I still plan on taking things one day at a time, but this has been such a wonderful thing to watch. My sweet, smiling girl is having a great time right now and every day with her is such a gift.
In short, we are back home, and we have our girl back to herself and then some. What more could a family ask for?
Until next time,