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)
Thursday, April 26, 2007
big preschool visit day
Incredibly wonderful. So exciting. Perfect.
He did amazingly well.
I'm too tired to write more, but it was as wonderful as I'd hoped, and even more so.
Lars thought so, too.
He did amazingly well.
I'm too tired to write more, but it was as wonderful as I'd hoped, and even more so.
Lars thought so, too.
Tuesday, April 24, 2007
better mostly
Lars is mostly feeling much better. Tummy's still a little fragile & he's having (seemingly) random crying bouts this afternoon & evening, but fever seems to be gone (knock on cyberspace) & he was extraordinarily happy this morning.
His new teacher (gasp, grin) came to visit at home today. She's fabulous. They hit it off right away. She's almost as tall as Mama.
Genetics appointment tomorrow, Perkins social worker coming here tomorrow evening. We all go in to visit Thursday. So exciting...
His new teacher (gasp, grin) came to visit at home today. She's fabulous. They hit it off right away. She's almost as tall as Mama.
Genetics appointment tomorrow, Perkins social worker coming here tomorrow evening. We all go in to visit Thursday. So exciting...
Sunday, April 22, 2007
themes
Courtesy of zemerl dot com:
drinking
dancing
singing
shtetl life
suffering
parenting
food
That about covers it, vos?
drinking
dancing
singing
shtetl life
suffering
parenting
food
That about covers it, vos?
sibling thoughts
I'm putting together the next phase of an appeal to our insurance company to cover the siblings-of-kids-with-special-needs support group for Joa @ Children's. We missed participating in the current group because they hadn't approved it yet; I'm trying to get it in place for the next 8-12 week group. Found some interesting sibling experiences that give a sense of what's at stake here:
"I had only been exposed to the 'this experience will make you a more compassionate person' school of thought and because of that believed that the more negative feelings I sometimes have were merely selfish and evil."
"Nobody gets off easy in this mess. If the 'normal' child becomes the preferred one, he/she feels a lot of guilt and anger. If the special needs sibling becomes the preferred one, well, the 'normal' sib feels guilt and anger...many 'normal' sibs choose not to have children."
"(Healthy children) grieve, they feel guilty, and they struggle to compensate by achieving for two."
"Fixing the unfixable, or saving the irredeemable, is a frequent occurrence in sibling dreams... Dreams in which a sibling no longer has the disability give a brief respite that is both painful and pleasing to recollect."
"(The 'normal' one's) everyday trials and tribulations pale beside the catastrophe of their sibilings' predicaments, so it seems natural that they should never come first... As a result, many healthy siblings grow up with a hunger for attention that it never satisfied and that seems wrong to feel. Their needs, so consistently ignored, become invisible to themselves."
"The fallout from being invisible is to become self-effacing; perverse preeminence breeds perfectionism, morbid self-criticism, and fear of failure... Excelling is not an ideal; it is an emotional life preserver."
"... a nameless anxiety haunts them and makes everything they have seem tenuous or undeserved... compulsive self-sacrifice driven by the belief that you do not deserve your advantages... At significant moments it is excruciating to know how much better off you are and always will be."
"As difficult as it was to read this book and grapple with all that I had so conveniently ignored for so long, recognizing the common traits of 'normal' siblings is key to becoming whole. Safer outlines those traits to be:
- Premature maturity ("... expected to shoulder ... responsibility ... w/o complaint.")
- Survivor guilt ("Every achievement is tainted...")
- Compulsion to achieve ("... must succeed for two...")
- Fear of contagion ("... secret conviction that normality is tenuous or a sham.") "
"For a long time, my other siblings and I resented "what he had done to the family" but the fact is, he can't help it. And we have come to terms with his disorder, and even found him to be enjoyable if you are patient enough to sift through the layers of fear and anger. Frankly we have banded together as siblings over his illness, but it took time, and most of it was due to our parents, who balanced his needs against our perfectly understandable resentment, anger, and misunderstanding. They never rebuked us for how we felt, only explained to us the truth of my brother's problems, and were always available to talk to us when we needed to vent. My brother HAS a problem, he's not a problem. So I think if families were aware of what the normal one was thinking, they could help their normal children more, and help them to work through their resentment and guilt."
"I had only been exposed to the 'this experience will make you a more compassionate person' school of thought and because of that believed that the more negative feelings I sometimes have were merely selfish and evil."
"Nobody gets off easy in this mess. If the 'normal' child becomes the preferred one, he/she feels a lot of guilt and anger. If the special needs sibling becomes the preferred one, well, the 'normal' sib feels guilt and anger...many 'normal' sibs choose not to have children."
"(Healthy children) grieve, they feel guilty, and they struggle to compensate by achieving for two."
"Fixing the unfixable, or saving the irredeemable, is a frequent occurrence in sibling dreams... Dreams in which a sibling no longer has the disability give a brief respite that is both painful and pleasing to recollect."
"(The 'normal' one's) everyday trials and tribulations pale beside the catastrophe of their sibilings' predicaments, so it seems natural that they should never come first... As a result, many healthy siblings grow up with a hunger for attention that it never satisfied and that seems wrong to feel. Their needs, so consistently ignored, become invisible to themselves."
"The fallout from being invisible is to become self-effacing; perverse preeminence breeds perfectionism, morbid self-criticism, and fear of failure... Excelling is not an ideal; it is an emotional life preserver."
"... a nameless anxiety haunts them and makes everything they have seem tenuous or undeserved... compulsive self-sacrifice driven by the belief that you do not deserve your advantages... At significant moments it is excruciating to know how much better off you are and always will be."
"As difficult as it was to read this book and grapple with all that I had so conveniently ignored for so long, recognizing the common traits of 'normal' siblings is key to becoming whole. Safer outlines those traits to be:
- Premature maturity ("... expected to shoulder ... responsibility ... w/o complaint.")
- Survivor guilt ("Every achievement is tainted...")
- Compulsion to achieve ("... must succeed for two...")
- Fear of contagion ("... secret conviction that normality is tenuous or a sham.") "
"For a long time, my other siblings and I resented "what he had done to the family" but the fact is, he can't help it. And we have come to terms with his disorder, and even found him to be enjoyable if you are patient enough to sift through the layers of fear and anger. Frankly we have banded together as siblings over his illness, but it took time, and most of it was due to our parents, who balanced his needs against our perfectly understandable resentment, anger, and misunderstanding. They never rebuked us for how we felt, only explained to us the truth of my brother's problems, and were always available to talk to us when we needed to vent. My brother HAS a problem, he's not a problem. So I think if families were aware of what the normal one was thinking, they could help their normal children more, and help them to work through their resentment and guilt."
temp down w/tylenol, staying home
Got his temp down to close to normal (1st time in days) with tylenol alternating with ibuprofen & he feels much better. Were ready to go back to ED, but called CCS again & they said it's okay to stay home. Andey says his lungs still sound clear. Yeah!
still ill
Little man just doesn't feel well. Restless & awake a lot last night, stuffy/runny nose, cough, shallow & fast breathing, throwing up, diareaha, fever up & down with tylenol (i.e. gave tylenol @ 7; @ 7:30 temp was 105.4°; @8:30 it was 103.6°), miserable & disoriented, very attached (mama, if you get up to go to the bathroom I'll cry hysterically).
Running water + pediasure continuously through his g-tube at an extremely slow rate. He can handle that (i.e. keep it down), & we give meds via g. Seems like what we need to keep an eye out for are pneumonia & Kawasaki disease.
This morning CCS doc on call wanted him back in the ER to get checked out again today.
I was so hoping he'd be well this week to do his visits & get started @ perkins. Patience.
Running water + pediasure continuously through his g-tube at an extremely slow rate. He can handle that (i.e. keep it down), & we give meds via g. Seems like what we need to keep an eye out for are pneumonia & Kawasaki disease.
This morning CCS doc on call wanted him back in the ER to get checked out again today.
I was so hoping he'd be well this week to do his visits & get started @ perkins. Patience.
Saturday, April 21, 2007
the nice part,
if there is such a thing, about this virus is seeing how, even with high fevers, Lars still clearly knows who we are & is extremely responsive to us, comforted by our presence, immanently connected. That is certainly not the case when he is experiencing neurological pain; then most of the time he doesn't seem to know whether we're there or not, and it's nearly impossible to comfort him. We stick by him & try to give him the feeling that he is held & loved. That's about all we can do then.
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