what a day!

well, today was a crazy day....yep, i did read chapter 3 but i don't think i will comment on this go around.
anyway, it was busy busy busy as it usually is on a tuesday! he had his morning therapies and then our afternoon one. but my poor matthew is STILL SICK, he can't seem to shake this virus. i actually called his pulmonologist because he was not getting any better even after a round of oral steroids. last night he was on 1.5 liters of oxygen just to get him at 94%!!! i had to put two pulse ox on him to make sure they were correct and they WERE! but tonight, i am watching his pulse ox and he is sat at 97% on 1 liter!! go figure! he likes to play with us i guess. well, we are going to start ANOTHER round of steroids tomorrow for 3 days and see if that can clear him up....i worry about all these steroids they are pumping into him! no WONDER he is such a big boy! but, his lungs are soooo bad that we will take it anyway we can!

we met a family today at VITAL STIM. it was a little girl A that this was the FIRST treatment. i got to meet with the family and talk to them about what a WONDERFUl therapy it is! they were impressed with the out come! matthe has done soooo great! anyway, the terapist was asking why they were able to get nursing care when the little girl was not that bad off. the only thing she had was a g-tube! she was wondering why i couldn't have nursing care too ESPECIALLY since he has oxygen and such?! i told her, when you do sooooo well, it bites you in the butt because they KNOW you can do it so why do you need nursing care? anyway, just interesting how they were albe to get nursing care thru tricare....hmm....'

tomorrow we are going to go to GUARD FIESTA and i am really excited! just another day out as a family! always a party!