Landons birthday, sixth birthday believe it or not, seems like a great time to provide an update on how he is doing.
Landon arrived home from the hospital almost a month ago. The ride home I was second-guessing myself much of the way. And that first weekend was so challenging I had a hard time picturing how we would ever make it through the first 48 hours much less the next week. But we did. Then we did. And we still are. And one month later Landon is doing well. He’s still fragile; presumably from now on. But we are managing. And being able to manage at home has been so meaningful.
Hospice has proven to be a fantastic partner. The Dr and nurses come to us, and are very responsive and caring. I’ve called numerous times, usually at odd hours, and they are always ready to help. Rather than regretting the move, I wonder how we didn’t land here sooner. It’s still hard. It’s also right for us.
Home has allowed us the chance to greet the age of 6 head on at home. 6 is TRIPLE the life expectancy we were given once the severity was more clear. Home has allowed family movies, more hand holding, more snuggling. More blue game days. More reading in La La’s room. More of his special smiles. More glimpses of those bright blue eyes. More time. And another birthday.