Tuesday, December 2, 2008

Liam's testing

Liam's testing went fine today such as it was. There was a little confusion (read: incompetence) at the hospital so when we showed up at 8:45 after leaving home at 6:20 to ensure we wouldn't be late, the kept us waiting until 20 minutes after Liam's scheduled appointment time and then came out and said some version of "I'm confused; I see you on the schedule, but, why are you here?" So, blah, blah, blah. I explained that the neurodevelopmental clinic wanted to see Liam again and they wanted a play-based assessment first so they would have some information to go on; that we had be advised to come back at our last visit; that the hospital had called (twice!) to make sure we scheduled; etc., etc. Aggravating in the extreme. In the meantime, Liam was going nuts because he is right in the thick of 18-month-old stranger anxiety and he thought all the health-care professionals were incredibly frightening. Plus I'm sure he could tell that I was annoyed.

Eventually he calmed down (and I did too, a little) and played and was assessed (although not the formal test). He never really did calm down for the neurodevelopmental practitioner, but we answered her questions and she seemed satisfied/unconcerned, so the up shot is a good news story: we can self refer to speech and language therapy if he still isn't talking more at 18 months and we want to; otherwise, we don't have to go back unless we have concerns. Nice to be done with this for now. Thanks to GG (Will's mom) for getting up at 0'dark 30 to come with us so Will didn't have to go to the MRSA-infested children's hospital, where they advise immune suppressed people not to go.

Will has his GI testing tomorrow to try to figure out if anything can be done for his chronic stomach pain after eating (which is likely CF related, but could be nerve damage from chemotherapy). So, we hope that goes well and they can do something to help him. We're going to be big-time consumers of health-care in December.

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