little t...updates

So, it finally is REALLY and truly soaking in....Tristan is different. I mean...so f-ing what right?? Yeah, I can tell myself that over and over, but today...just for right now, I am having a moment, bear with me. I hope you all don't get sick of hearing these, because, as it looks right now, I may have a few more...just hang on it will get lighter...I just have to get through this little bit of heavy right now, hope that's ok.

We had little t's meeting with Arizona Long Term Care on Tuesday...ug, I hate these. The entire process is so invasive, you are put on the spot, questions are being thrown one after the other...you have to remember EVERY little thing so some question taker can jot it down and use it against you later...ok, that was unfair..but, really, it's kinda horrible-ish. This was the moment that it all hit me, like a big ole' freight train...BAM...he is different. They are asking questions,

Question Guy: "If your son is holding a ball above his head, and he throws it, does he fall?"

Me: "He isn't able to hold a ball up above his head...and he can't throw...but, yes, he would fall."

QG: "When your son walks up the stairs, does he hold your hand or is he able to do it alone.?"
Me: "He isn't walking up stairs yet."
QG: "When he eats, does he load his spoon?"
Me: "He isn't able to use a spoon..or plate...or bowl...it all lands on the floor, I either put it on the table or feed him."

QG: "Can he jump with both feet off the floor?"
Me: "No." *how sad is that...a little boy can't jump??? I mean, he wants to....just can't.*

QG: "When he takes his clothes off...*me inturrupting*

Me"...he isn't doing that...."

QG: "Does he help you with dressing."
Me: "No."

QG: "Are you potty training?"
Me: "Are you kidding??"

QG: "Does he sleep with his hands open or closed??"
Me: *pausing to think...* "closed...why?"
QG: "It's just a question we have to ask..."

Me: "ok."

QG: "When he lays on his back, can he pull his head up to sit up?"
Me: "No..."

QG: " So, he CAN'T sit up????"
Me: "When he is laying on his back, he only rolls to the side to sit up, his midline and trunk muscles are so weak that NO he cannot sit up by pulling his head to center and using his stomach and neck muscles to facilitate...did that make sense?"

QG: "yes...are you ok??"
Me: *crying a little....trying not to ball my eyes out in front of this stranger..* "mmm-hmm"

QG: "Just take it day by day...it'll all turn out as it should."

We are taking it day by day. But, everyday is just like the last. Today at therapy both his therapist showed GREAT concern over the fact that he is STILL not talking...he has been so painfully quiet these past few weeks. The only sound he is making is 'Ba'. Back to square one. We are going back to basics, just sounds that he is familiar with.

I think about all the milestones that he has yet to hit and how I somehow may have taken them for granted with T. Jumping off of the ground with 2 feet...do you remember when your child did that? I don't...but I can't wait for it to happen with him. Reaching above your head or to be picked up....Waving Bye....Playing Peek a Boo...these are all things he has yet to do. Man, this is hard. I am in this stuck place...I don't want to be stuck. I feel sad and overwhelmed...then, I feel guilty for feeling that way. Today, when we got home, little t was sleeping...T looks at me and says "Mama, he's going to be fine." My 4 year old daughter is reassuring me....I wish I could believe it. She is so sure though. She says "He may not talk mama, but he knows us...he knows what's happening. When he gets older, we can find out what is wrong..but for now, we can just love him." OY, my heart melted, she is so incredibly mature for her age. I love her so much.

He has an appointment with the ENT to see if there is some other reason that he is not talking....possibly a blockage in his ears. I will keep you all posted and please keep his progess in your thoughts, we need all the help we can get.