"The Couch Crew"

Can you believe it? I got a picture of the kids all together! Doesn't happen often,lol...It was back to school this week for Ryan, Stacy, and Samantha-everyone is having a rough time getting used to the newness of it all. I hope by the weeks end, they will all feel more settled in.

Tomorrow night is another sleepover for the kids at Aunt Lallie's, we go very early Thursday morning for the last infusion of Rituximab and another infusion of IVIG. Long day it will be! Then-A WHOLE MONTH BREAK! Yippee! I'll hardly know what to do-Just kidding, I'll find lots!

I heard from our nurse here at the local hospital yesterday and it was bad news. They have "officially" shut down the oncology unit for good this time (where we do IVIG most of the time) She is the last nurse to leave, and we will miss her. The timing isn't too bad for us though because Connor will now be getting IVIG every 4 weeks instead of every 3-so we had already planned on doing them in Atlanta since they will coincide with doctors appointments anyway. But it is sad that a town as big as ours won't be able to care for kids with these problems anymore.

No speech going on since Connor has been too busy with all his Atlanta appointments...next week we will get back on track with it I hope.

We are getting very concerned about a strange symptom Connor is having. It has been going on for about two months now and it is so scary listening to it when it happens.
Out of the blue-he will make this gasping for breath sound. Almost like half a hiccup sound. Happens randomly during the day-but all day long...probably at least 20 times a day I would guess. We just noticed a couple weeks ago that during these gasps he is usually having a body jerk of some kind (like his whole body will shudder or a part of his body will jerk) It happens so quickly-and most people either think he is playing or being silly, but he is not. We told the doctor about it last week and he listened to him breath and says his breathing sounds fine-but if this is OMS hitting his lungs, it is scary to us-even if his breathing sounds normal in between...another thing to investigate...

The Decadron finished with a bang! It was rough on Connor (and us) but he did great. Now he starts on his antibiotics that he will take every until he is off the steroids.

All for now!
Debbie