Sorta, Kinda, Maybes

After going over some older blog posts I have noticed I write in approximates most of the time.

As a parent of a trached former preemie I live a life of approximations. Of course there are a few solid things ... we meet with the therapists for one hour at a time weekly, we have be at the Dr at X:30 in the morning , there are exact doses of certain medications, the trach really needs to stay in the neck . ;o)

Otherwise we are floating adrift in a sea of possibly maybes.

Possibly today Sebastian will run normal,

Maybe he will be able to speak in a appropriate manner for his age,

Possibly this next procedure really will be the last needed,

Maybe he is just really tired not getting sick-again,

Possibly he just needs the bump in his O2 for tonight only,

Maybe we will get through an entire meal without me having to dig food out of Sebastian's mouth because he has stuffed too much in it again since his jaw muscles are still too lax,

Possibly he will sit still long enough to get all his treatments so he won't wake up at three AM scared and gasping for air.

Maybe we will get the trach out before the fall

Possibly won't - you never really know

Maybe for once something won't happen on the way out the door and we can arrive somewhere on time !

Possibly someday I won't have to worry about Sebastian splashing in the tub

Maybe someday we can snuggle up and nap together in the same bed

Possibly the next time we go to the park he won't get "stuck" pacing the ramps

Maybe next summer , his third, he will touch sand for the first time

Possibly he will even be able to play with chalk

Maybe some day I can drive my son in the car alonw without a oxygen monitor and a mirror to keep an eye on him

Possibly the next medicine will work

Don't get me wrong, I know in the overall grand scheme of things our life with Sebastian is pretty tame. He is amazingly strong and thriving insanely well for a preemie and I am thankful for that. I know he is stable and can go for super short periods at least without the trach and not code on us. With everything he has been through he is one super lucky little guy and we have it easy peasy compared to many of my fellow trach mommies, just this evening I am weary from the thought of it all.

At the pulm Sebastian was prescribed Tobramycin 2x daily x 30 days which we had to get through another DME... it arrived today. A huge bag stuffed with more medical goodies to stuff,wedge and cram into his own personal PICU.

Possibly this medicine will work.....