good weekend

Had ourselves a swell weekend, with all day Saturday spent at the Perkins Preschool conference, which was fun, and today we were at church where I heard the woman who is candidating for our senior minister position (thought she was wonderful) & Lars took an inaugural 40-minute swing ride on the new swing purchased just for him, & we had a little ribbon-cutting ceremony wherein our director of religious education read from a book called Welcoming Children With Special Needs: A Guidebook for Faith Communities & re-affirmed that he is fully welcome in our Unitarian Universalist congregation. A beautiful thing, indeed.



We're set to start preschool at Perkins on Tuesday. ! . Was in the preschool Saturday because that's where Lars' childcare for the conference was based & they have created his own unique tactile symbol (with yellow mylar); there's one in his class & one on his cubby down low where he can find it. I was teary just looking at it; town never did one thing to get ready for his arrival.

Four-hour genetics appointment last week. Yikes. They want to re-test Lars for D-2 Hydroxyglutaric aciduria because there are often false negatives, and because so many symptoms match...actually 12/13:

+(neonatal) seizures which are often hard to control (this is probably the most common symptom)
+hypotonia, especially in the first few weeks of life
+mild dysmorphic features (e.g. micrognatic, hypertelorism)
+dilated cardiomyopathy (dilatation of the left ventricle)
+gastro-intestinal problems; a lot of vomiting especially in the first three years
+slowly working stomach/bowels; constipation is common
+gastro-esophagal reflux
-cardiomegaly (sometimes) [don't have this one, at least not that we know]
+myelin of the brains not fully developed
+developmental delay
+irregular EEG (a.o. hypsarrythmia)
+cortical blindness
+abnormal MRI-findings (immature brains, pachygyria, micro- or macrocephaly)