Lars had an unbelievably great first day of school yesterday!
Details and pictures to follow soon.
(Mama's been sick, or there would be many more details already...ah well.)
Wednesday, May 02, 2007
Sunday, April 29, 2007
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)
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)
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