Has anyone seen Jonas?

We've had a very busy schedule this week. One appointment after another. I actually don't mind because it gets us out of the house. Tuesday went to visit our GI doctor for Jonas' g-tube. Dr. Downey said the site looked pristine...Yay me! Also because Jonas is the longest boy in the world he was actually fitted with a different size of g-tube...this one is smaller. It's a miniature version of the one he already had. Pretty cool, now maybe when he is on his side his milk won't leak out.
Wednesday we went to get our next RSV shot. Jonas is one smart kid. He started crying the instant that we put him on the crinkly paper. Then when the nurse wiped his skin with the alcohol swab it all broke loose.
Yesterday was our Dr. Swoboda visit. That was an all day event. After being delayed a couple of hours and driving around for an hour so that Jonas could have somewhat of a nap...we made it in. Again Jonas knew something was up because the moment he was put on the white sheet...not happy. He is such a sensitive little boy. They need to get measurements for his head and arms and chest and so on... just a little touch and he's crying. Good thing for Tarzan. He distracts him just enough to not have a complete meltdown. Where is that dang binkie when you need it!
So the result of the visit was that Jonas is weaker than before. Which was already assumed. These past couple sickness have just really taken their toll. When you have little reserves to go off of..getting them back isn't the easiest thing in the world. We are going to be switching his diet and giving him some Robinol to help handle his secretions. Hopefully both of those can get Jonas close to where he was before. It's the nature of the disease to progress, every sickness makes that progression a little quicker and they usually can't fully recover. So as usual not the most exciting thing to come home from one of those appointments, but I'm use to them. Before they would drag me down into a depression, but I'm getting tougher skin.
Today we would have been going back up to do a physical therapy assessment, but we were rescheduled. The joys of living so close to the hospital.
On a good note..Yesterday as we were getting ready, Whit called and I could just tell that Jonas wanted to talk on the phone. He talked to Whit forever! Using all sorts of sounds. He has a new sound that he as been doing with his tongue..kind of a lalalala. I'll try to catch that. It's so cute.

Maybe these are the reason for all of the secretions in his mouth.....the sixth has just broken through..two on top four on the bottom.