Reunions

We successfully made it home Friday evening; it was a very exciting time for us. As Maggie was on the ventilator for so long (43 days) we often wondered what she'd remember from before her illness. What would be the effect of being unconscious for over a month? Well, the car ride home was a little bit harder to enjoy than we had envisioned--our car was packed to the roof with all of our things. But as we got closer and closer to our home, Maggie started getting excited to see our neighbors' dogs running around outside. It was all she could talk about. We were happy to know that the things that used to make her excited....still made her excited.

She has transitioned well to being at home. She is crawling a little bit, but is mostly staying where we put her. She is enjoying her old toys (some new ones) and the sights and sounds of the Backyardigans. Things are good.

The course of the recovery of Maggie's lung injury was impossible to predict. The specialists all said that it could take a long time. I'm sure it will be a while until her lungs are fully recovered. One of the pulmonologists predicted one of the things that we would see is a sudden stretch of dramatic recovery. It was just a question of when. Well, that has happened. Maggie went most of the weekend and the first part of this week without any oxygen support. We have given her a little bit of help when she sleeps, but she has made some big strides. The lung recovery will be ongoing, despite the progress. Maggie's appetite is minimal, but she is off of TPN entirely and is still tolerating the very gradual increases of her tube feeds. We are hopeful that the worst of Maggie's chronic GI issues are behind us. The other issue that we are seeing is that Maggie is struggling with a sore foot. She injured it shortly before we were discharged last week. She won't put much weight on it, and as a result, she hasn't had the time to work much on her leg strength. We hope that she gets over it soon. Today she had a weird day--she seemed scared easily and a little bit insecure with her surroundings. We'll figure it out, I'm sure.

It was an exciting day for us today as we saw Dr. French and his staff at the Hem/Onc clinic at Dayton Children's. We did a little bit of catching them all up on Maggie's last few months, made some plans for the near future, and we had a celebration. Maggie got certificates, a cake, a gift (baby doll), and best of all, she got serenaded by the nurses: "No more chemo for you, no more chemo for you, no more chemo for Maggie, no more chemo for you!" It was a song that we had heard once or twice in the clinic when other children reach the end of treatment, and we've looked forward to it more than anyone could imagine. Everyone was thrilled to see Maggie, and they all thought that she looked good. Following our visit there, we made a quick stop in Dayton's ICU to complete a promise that I had made when she was being wheeled out to go to Cincinnati: we will bring Maggie back to visit with you, and soon. It was an emotional reunion there, too. We have just received amazing care over the past few months and so many people are excited to see her doing so well. Dr. Joshi was able to see her (he was the attending intensivist who spent the most time with us in Dayton) and we had hugs for him. We also saw, among others, the rest of the team that transitioned Maggie to Cincinnati: Andrea, our nurse for the difficult last day in Dayton, and Brian, the respiratory therapist who was one of the kind souls who rode in the ambulance with her. We are so grateful for the hundreds of people who helped Maggie get through the most unbelievable and horrifying illness. We hope we can reunite with them all in time.

Until then, we pray that you all are well. Goodnight.