I am learning more and more each day to embrace change. So next week we are meeting with the school system for Grayson. This is such a big deal because we are transitioning him out of First Steps (his therapy program for 3 yrs and younger) to JCPS. We will stop seeing the therapists that we have been seeing for almost three years now and move to a completely different way of doing things. Basically two preschool teachers and the guy who does the evaluations will present what JCPS can offer us for Grayson. Here's what I know so far. There is only one school in the enitire state that can accomidate us and offer us the education that he needs. Also, this school has a sensory room, a pool, and adaptive indoor bowling alley and a handicap accessible new playground! This sounds amazing so far right:) I have also learned that kids who aren't ready for being in the classroom for medical reasons have the opportunity for a preschool teacher to come to your home and teach a couple days a week. So until Grayson is ready to go to the classroom we will use all the in home education that we can! I am excited, but scared to death at the same time....so yall pray for me okay!
Next update, we will be getting his leg and back braces next week:) this is one of those bitter/sweet feelings, he needs it, but he is going to hate them at first. So we will start him out for 30 minutes at a time and then work up to a few hours a day in both of them. The good thing is that he should be able to sit independently with his back brace!! He is going to love that, he wants to be independent so badly!
So, a couple of days ago at about 5am, Jay and I heard Grayson making some new noises that sounded very different than his usual sounds. I looked over at his monitor and saw that all his levels were fine and so I layed there for a few minutes longer. Then Jay and I looked at eachother and he says to me" will you check and make sure he is ok, he sounds different". so I lean over his bed and he looks fine and his monitor looks fine. I then thought I had better make sure that his trach is not plugged off. Well, I bent down to suction his trach and it was out!!! The little stinker was laying there with no trach and he was fine!! Of course we hurriedly put it back in, but he was fine...this was a huge moment in all of our lives! Grayson was totally breathing on his own with no trach YAY! That was definately a thank you God moment because I have no idea how long he went without it but he was just laying there like no big deal mom and dad:) New prayer is that sleep apnea is resolved by spring so he can get it out!! He apparently does ok when he is awake without it, but during sleep is another ballgame all together. I have said it before...never a dull moment around here:)