· Normal is a dryer setting.

gtube

GI and pre-op

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.

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Urology appointment

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.

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Weight gain and loss

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.

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The child who never was

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.

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Therapy and school

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.

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