I called AGAIN yesterday and FINALLY got an appt. for Sammy for Mass General Hospital for a total feeding eval and ear nose and throat eval! I am psyched ! They got us in for next Tuesday, the 4th! WOW! It is really hard to get an appt. there and to get one so soon, I feel like God is watching over us! :) I am really excited about this appt. We can finally be ok with whatever the outcome for the g tube is after this....If they agree, then I think I can accept it. Poor guy doesn't want to drink a bottle for the woman who watches him 2 days a week after his school, which is not good, because yesterday he was having what looked like his myoclonic seizures, I figured probably because he was getting dehydrated. Some days he does well with drinking the bottle and other days like at the bedtime one he chokes like a madman. I just want answers for what is best for him in the end....I will update later on that...

We are also going to visit what sounds like a great K-1-2 classroom for Sammy next week. I have heard awesome things about it...they also include them at points during the day as well in the regular ed rooms, which is nice. We'll see how it is...

Sammy's new eye gaze device

Little video of Sammy using his new eye gaze device...and at times trying to be fresh on purpose!! Love it to pieces!!! :)www.youtube.com

www.youtube.com

Thank God in heaven that Sammy has NO idea about all of the dr. crap, and he just lives everyday like it was made for swinging! :) My mom and brother got Sammy a new adaptive swing for Xmas. He LOVES it as you can see! :)

ugh....

We got a call from Dr. Dempsey yesterday afternoon. (our ped.) He had received a phone call from our ped. pulmonologist that said Sammy failed his second swallow study and that he needed to get a g tube. The GI doc concurred wholeheartedly. Isn't this great news??? What upsets me is that we met with the pulmonologist about 2 weeks ago and he told us that we should meet with a feeding team in Boston and get options. I told him that it was so great to hear that, that we were happy to hear that we wouldn't have to automatically jump to a g tube...I feel so defeated... Brian and I are still going to insist on going to Boston first. I refuse to give up so easily!

We went to Boston on Friday since we had the day off and got Sammy's comm. device. It was such a beautiful day and we took the new handicapped van (yet to be adapted). Sammy loved riding in it! We stopped at the Olive Garden for lunch (yum!) and then went to Bass Pro Shops for Luke's enjoyment! It was cool and we got some new lures for our upcoming fishing season! :) Yah! :)

We have to call the rep guy today and set up a time when he can come and train us on the computer and get it all set up...hopefully soon!

Had a good Easter Sunday other than me having a miserable cold and Luke getting bit by some mystery bug in the morning while riding his ATV and ending up with a nasty rash over his arms and face. Poor guy, I gave him some Benadryl last night and he still woke up this morning with it also on his chest and itching...can't imagine what it was! UGH! Can we catch a break?!

Enjoy the pics! :)