off again...

So Sammy and Brian (I can't take tomorrow off, my poor kids at school have their yukky all-day standardized testing) are off to Baystate again tomorrow for another swallow study. So he is only on 1 1/2 mg. of Baclofen, I guess if we started seeing swallow issues at 2 1/2, then hopefully we will get more accurate results now that he is only at 1 1/2 and Brian refuses to take him lower again....the good news is that his pulmonologist (the one with moderate CP) said that he wants us to take him for a 1-2 day eval at Mass General for the sinuses and to see a feeding team, that may help us avoid the g-tube if we can get alternative things to do for him...I'm not sure what, but it was SO nice to hear that the g-tube wasn't automatically the result of the swallow study we had. Weird how God is starting to answer my prayers that my little man be given a break already! We still haven't even given a second thought to getting to see the ped. urologist about his undescended testicle yet! Hey, we have bigger fish to fry at this point, right??? I'm thinking that will wait until summer vacation for me! Our ped. said they will probably just wait and watch it anyway....

Still waiting on the talking computer..it's been like 6 weeks, so maybe 2 more to go?? And hopefully the new adaptive "stroller" will come soon, too...

So funny, to add, Sammy got a cough assist machine last week, that is basically like a vacuum for his lungs..it helps to bring up the mucous..well his pulm. told us to do it for a maintenance thing, and I am thinking I don't want to do this 3 times a day because it seems like torture to me! Well, I did it with him (MY first time doing it with him) for the 1st time on Saturday, and he GIGGLES after you do it!! That's right..my odd little man GIGGLES after this thing sucks out his air! I told him we are vacuuming the Sammy so he doesn't get dusty! Of course, that makes it even funnier! Hey, if we can't laugh, we're going to cry, so may as well make the best of it! :)

New pics of Sammy and Brian on the new tractor...yeah, he HAD to have it! (Brian that is!) I call Sammy "Farmer Sam" now! We sing "Old McSammy had a farm..EIEIO!"