We picked up a little blender the other day. It brought back some bittersweet memories, and we created some new ones.
September 5 is Pierre Robin Sequence (PRS) Awareness Day!
Physical therapy has always been a part of Namine’s life, and it always will be. She has to work harder to do things that just come naturally to other children.
We spent nearly three hours in the hospital today. Thankfully, though, this was not a reactive visit – nothing was wrong that sent us rushing in. No, the clinic appointments today were twofold: to once again establish a gastoenterologist for Namine, and to make sure she’s healthy enough to have some procedures done next week.
We met today with Dr. Mesrobian, Namine’s urologist, to discuss the results of the tests done a while back. We had a pretty decent idea of what to expect coming into the meeting. I’ll be frank here: we’re talking about potty training here, so if you don’t want to hear the potty talk, don’t click the link.
Do you remember those days – it seems so long ago – when we were told by GI doctors that Namine was not gaining weight, and that she’d have her g-tube until the third grade? They refused to back down on her g-tube feeds and just let her eat, convinced that her weight gain would happen by pumping formula into her and not by real food.
I follow a wide range of people on Twitter – special needs parents and experts, individual programmers, as well as companies. I also follow a few joke accounts. A couple days ago, a tweet by @soveryawkward struck me to my core – “That awkward moment when you realize that sometimes good things fall apart so better things can fall together.”
There are no gunpowder, treasons, or plots here. Just a little thing called decannulation. That’s right, kids. A year ago, Namine got rid of her trach, and her entire world changed.
I’ve seen quite a bit lately on Twitter about grieving your child’s special needs. Most often, this applies to autistic kids (kids with autism? I won’t get into a semantic debate with anyone), but it also pertains, really, to any disability – whether “visible” or “invisible.” And I think it’s a load of crap.
This morning a physical therapist came to the apartment to evaluate Namine. But this was no ordinary PT – if there is such a thing – this was a PT from the school district. She was there to examine Namine in order to determine what kind of therapy she might need when she starts attending school. Things like her preferred method of locomotion, level of toilet training, gross and fine motor skills, listening skills, and cognitive ability.