Therapy Eval

Well, that was a waste of our time. Pacen is functioning at the physical level of a 5 month old. Which is still in the normal range. They told me things that I already know; that he is cognitively & emotionally on track for his age, he reaches for toys equally to the left, right, and can bring his hands together at midline, he can roll & has high muscle tone..... The only things that are holding him back from a "6 month" level is that he cannot sit up unassisted (getting close!), pivot on his stomach to reach for toys, or to grab two toys at once; one in each hand. The ladies doing Pacen's eval were astonished that I know his medical history by heart and understand it. I have his most current weight/height/head circ memorized, and that I am knowledgeable of his medication and doses, when he was hospitalized, what tests were ran, outcomes of blood work, and all other medical testing that he has gone through.

I will have to recount all of Pacen's appointments & tests that have been done, I think we are nearing 25 or 30 appointments for this child, in 6 months + 1 hospitalization, 5+ blood draws (not including normal newborn screenings), 2 ultrasounds, 1 upper gi barium study, 1 gastric emptying scan, and by the end of this week we will tack on a sedated MRI of his brain to check for brain damage. What child needs to go through this? I take countless hours/days off of work, drive 180 miles round trip for a 15 minute GI appointment, go to weight checks weekly (thankfully monthly now), wait an hour or more past appointment times because the people ahead of them were taking longer than expected. I take our infant to a neurologist when he should be happily playing at home ... but, if its all for nothing I'd do it all again in a heart beat for my sweet boy. It sucks now, but there is an end. This too, shall pass.

Now we gear up for his MRI on Thursday morning and GI appointment Thursday afternoon (which will probably be a waste of our time as well). Hopefully the weather is nice and we can hit up the zoo in El Paso for something to do in between appointments.