MDA clinic and Red Sox players

What a day!  It was overall successful, it's just tiring packing the boys up, seeing lots of docs, and heading home.  That sentence sure doesn't fit how tiring it really is!

But, we made it out of here at about 8:30.  Luckily I had 2 nurses today--Julie and Nancy L.  Gene was too sick to come.

We still had to wait a bit even though we got there on time.  Sometimes it doesn't pay to rush, sigh.  Oh, and there were snow squalls and I was getting nervous, but when we hit Chimney Corners, they pretty much stopped.  It's weird how sometimes it ONLY snows in Milton.

Nurse Jackie Schwartz put us in a treatment room instead of one of the small rooms that we usually go in.  She said she cringed when she saw us packed in the room last clinic.   We had one boy in the room and one boy in the hall last time. I have no clue why they made the rooms so small. 

We saw Dr. Bingham, the neurologist first.  Talked quite a bit about Casey and his sometimes holding his pee.  No real answers, but he said maybe we can get a urinalysis done just to rule out anything.  He didn't give us an order but said that Dr. Donna can write an order if we wish to do that.  Updated him on both boys.  He's going on sabbatical for 5 months so we probably won't see him next clinic time.  Oh, and we were talking about their switches and tired fingers and he mentioned that he knows a doctor/engineer that is into how people drive wheelchairs with switches.  Well, isn't that just up our alley?  He said he'd get us in touch with him.  I think he said his name is Dr. Christiansen.  I hope he doesn't forget.  Saw Dr. Lariri (pulmonologist).  Updated him.  Nothing much different.  Talked about Casey's humidifier/heater, Colin's bipap dependence.  Then saw Dr. Benjamin, rehab doc.  He's going to write a script for Colin to get solid AFOs for standing.  I showed him the pics of Colin standing with his knees bent and he was okay with it.  Saw nutrition-not Linda LaShure.  Updated her.

Poor Casey was out of sorts.  He had 'stuff' in his trach and wanted a cough.  We were all bundled up and ready to head out to the van.  Went to the lobby of the Children's Center and there were two Red Sox players!!  They were on a goodwill tour of hospitals around New England.  Casey didn't want to see them, at first, and he and Julie started out to the van but I wasn't going to let this opportunity pass, trach secretions and all, lol!  I had to sign something allowing the hospital to take pics, etc.  Both boys were presented with a stuffed Wally.  They got their pictures taken with Ryan Lavarnway #60 and Pedro Ciriaco# 77, catcher and shortstop respectively.  They were very nice.  I think they were a little overwhelmed with Casey's DynaVox--they didn't quite know what to make of it.  I wish Casey had been feeling better because he really would have enjoyed it better.  Colin was thrilled and when we left he kept saying more, more, more.  He wanted to hang out with them some more!  And, of course, when Casey finally got his cough he felt better and wanted to go back up.  Oh well.

I only got one picture because I don't have a smartphone but one of the hospital people took this and emailed it to me.  Poor Casey was a grump!

And that was that.  Another clinic down.

Mel came for about an hour and did some DynaVox things with Casey.  Colin got out of school totally because Priscilla got called to a meeting.  Colin was quite happy to play some Sponge Bob computer game with Nancy.