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December 15, 2005
The Month of Many Doctors
15 days in, and there have already been 4 doctor/therapist visits, with one more scheduled for the 19th, one that needs scheduling, and an Individual Family Service Plan meeting for Early Intervention on the 28th, to round things out.
Two of the visits were evaluations for Early Intervention. One on Thursday two weeks ago with a rehabilitation doctor, who was basically tracking physical and other development. That went pretty well, even though the doctor seemed a little flakey at times, asking twice when Dashiell was born and how old he was. The other evaluation on Tuesday last week was with a Physical Therapist and an Occupational Therapist and was a more hands-on eval of Dash, as well as more specific questions for us regarding his development. From the way they were talking to us, I gather that Dash is probably going to get recommended for services, as they warned us not to be too upset when we receive their report. They explained that the report of course focuses on shortcomings, and seems to be very negative as a result, and that they often state things in fairly strong terms to make sure that the state takes the appropriate action and makes services availible to families. The PT and OT were very nice, and the facilities at the children's hospital were nice also.
There is something very heartbreaking though about a place like that, with kids in braces, wheelchairs and with crutches... you sit in the therapy waiting room wondering what the other person is there for, what condition their child has, knowing that it's nothing as simple as a little cough or just a check-up, like in a normal pediatrician's waiting room.
The PT did recommend that we choose home-based services if/when we get into the program. For starters because the children's hospital has a waiting list, and secondly that being at home is easier for a few reasons. The reasons are fairly obvious when you think about it... you take away the strangeness of a new environment, the child remains in his comfort zone. And you get to work with all the tools at your disposal at home, rather than maybe using nifty equipment at the hospital which you have no access to at home, and the therapy will most likely contain things that I/we will have to do at home as well.
It was interesting that the PT and OT seemed impressed that we knew so much about Dashiell and his development (they had to rely on a lot of our verbal descriptions because Dash was asleep, after being awake for about 7+ hours straight prior to the appointment). That we could tell them what he could and couldn't do, how he was doing certain things, when he'd started doing them. I would have thought that that kind of thing went without saying, but I guess not.
Last week on Friday he had a check-up with the pediatrician, in part also just to touch bases with him because we hadn't seen him since before Dash was diagnosed. All was well there, though the ped brought up potentially starting early solids, which isn't what I want to do, for various reasons. I'm hoping it doesn't become a bone of contention.
Next up is a visit with the pediatric cardiologist on Monday. The other doctor's visit that we need to schedule is for an ENT doctor, Ears-Nose-Throat, also known apparantly as an Ototlaryngologist. Try saying that fast a couple times in a row. Cri du Chat kids often have small/narrow larynxes (responsible for the higher pitched/cat's cry, which he doesn't have though), so we're getting him checked out on the cusp of the cold/flu season to make sure that if he does get something like a cold that it isn't much more dangerous for him.
Other than that, everything is going well.
Posted on 03:04 AM to: Cri du Chat , Dashiell , Parenting