I know, there haven't been many updates. I have my excuses (like it being tax season and barely having time to do the necessary things most of the time), and, thankfully, things are pretty 'normal' around here. Normal for us may not be very normal, but things have been quiet with few surprises, and very few appointments.
Since his last update, we have decide to pull the plug on the VNA visits. Our normal nurse got moved elsewhere, and we had a string of other nurses who didn't like reading up on patients, but preferred to hear a patient's story from the parents. Incidentally, having to tell someone things they can access in their tablet gets old really quickly. Also, the big service they were providing at this point was to weigh Timmy every 3 weeks. If things change, we can ask his Dr. to start it up again, but it was getting to be more of an interruption than a blessing.
He continues with therapy 3 times a week (speech, occupational, and physical), although he has had the last week off as sickness has swept through the ranks in our house. So bad that our college kid has been pretty much down and out for 4 days now, and it has hit everyone. Timmy seems to be on the mend as of this morning, and slept well last night as well.
In 3 weeks, we have our first Cardiology visit since the beginning of November, and in May, we go to nutrition for the first time since December. It is weird to have so long between appointments, but a blessing that things are much more stable now.
As I think of Easter tomorrow, I understand quite well the joy the disciples had in the empty tomb. Our boy was sent home to die 16 months ago, and is still with us. I may not have an empty tomb, but the empty coffin is a comparable joy.
Built with love and with much sorrow, but the continuing source of great joy. The coffin is empty, just as the grave is. For Christ, He is risen! For Timmy, he is still with us! I enjoy celebrating life!