Lars has been really up & down the last couple days, starting Thursday. Hours of delightful happiness, and hours of really feeling badly, screaming until he turns purple. Yesterday screamed through swimming & for more than an hour in the car, both locations he very rarely feels badly in. Then he was happy as a clam from about 6:00 p.m. through the night. Woke up fine, but by 8 a.m. was in pain again, and has been fairly miserable all morning.
Still remnants of the Wednesday med decrease? Neurontin leveling out? Something else? We've given tylenol, but no other meds yet. So sad, though. Big tears.
Saturday, April 07, 2007
Friday, April 06, 2007
collaborative visit cancelled
Team leader called & said town collaborative has decided not to run a preschool program next year. Okey dokey, no visit today.
Called pediatrician & tried to hurry him along with Perkins paperwork; we offered to pick it up & drive it to Watertown to save a couple days.
Returning many phone calls from last several days. Possibility of a volunteer to come hang with Joa once or twice a week & do fun stuff with him; hoping for a "cool young Guy". Possibility of PCA (personal care assistant) hours from UCP (united cerebral palsy).
Called pediatrician & tried to hurry him along with Perkins paperwork; we offered to pick it up & drive it to Watertown to save a couple days.
Returning many phone calls from last several days. Possibility of a volunteer to come hang with Joa once or twice a week & do fun stuff with him; hoping for a "cool young Guy". Possibility of PCA (personal care assistant) hours from UCP (united cerebral palsy).
collaborative visit today
We're visiting the collaborative this morning, then going swimming in the warm, warm pool at Fernald. Anyone want to join us, we'd love it. Around noon.
Lars is generally feeling great, although yesterday afternoon & evening he was significantly distressed for several hours. Last week it was Friday morning. We've been decreasing his vigabatrin (a seizure med he's been on since 9/1/04) every Wednesday by a little, and I'm wondering if his Thursday/Friday distress pattern has to do with his response to the med decrease. Increasing or decreasing meds has traditionally been rough for his system.
Lars has been waking up happy, instead of the crying he had been doing. What a blessing & a joy.
We delivered all the paperwork to Perkins & are crossing our fingers for a visit next week.
And we got Big Grandma Helpful, the home health aid, back for 2 hours, 3 days a week. Amazing....Mass Health is covering what Blue Cross wouldn't. Go figure. She's turned out to be great with him. Still a bit of a learning curve. Remind me to tell you the applesauce story.
Lars is generally feeling great, although yesterday afternoon & evening he was significantly distressed for several hours. Last week it was Friday morning. We've been decreasing his vigabatrin (a seizure med he's been on since 9/1/04) every Wednesday by a little, and I'm wondering if his Thursday/Friday distress pattern has to do with his response to the med decrease. Increasing or decreasing meds has traditionally been rough for his system.
Lars has been waking up happy, instead of the crying he had been doing. What a blessing & a joy.
We delivered all the paperwork to Perkins & are crossing our fingers for a visit next week.
And we got Big Grandma Helpful, the home health aid, back for 2 hours, 3 days a week. Amazing....Mass Health is covering what Blue Cross wouldn't. Go figure. She's turned out to be great with him. Still a bit of a learning curve. Remind me to tell you the applesauce story.
Tuesday, April 03, 2007
phone calls, paperwork
Spoke with Perkins preschool nurse & admissions guy yesterday: "I've been getting phone calls all day about Lars." Says staff are getting set up & will be "ready to roll." He was very sweet & congratulatory. Paperwork was mailed last week & should arrive today. I'll copy all reports needed today & we'll have forms to take to Lars' pediatrician. Can't arrange transportation until after collaborative visit on Friday.
Dreaming of starting maybe the Monday after April break? 4/23?
Starting to shift his sleep/wake/eat schedule earlier & earlier. With traffic on the pike, guessing he'll need to leave by 7:00 for an 8:30 start.
7-year DOE (dept of education) review @ Mercy Centre this week, so I'll be there today before going to teach tonight.
Dreaming of starting maybe the Monday after April break? 4/23?
Starting to shift his sleep/wake/eat schedule earlier & earlier. With traffic on the pike, guessing he'll need to leave by 7:00 for an 8:30 start.
7-year DOE (dept of education) review @ Mercy Centre this week, so I'll be there today before going to teach tonight.
Monday, April 02, 2007
meeting went well
Meeting this morning went very well. Emphasis on 'we don't have the TVI Lars needs & no real hopes of getting one.' Set up an interim schedule- OT & PT only, Tuesdays, Wednesdays, & Thursdays. Left open possibility of circle/classroom time Tuesday mornings before OT.
Packets mailed to collaborative & Perkins today. Official collaborative visit 9:30 Friday morning. Principal & team leader know the likelihood of us choosing that program is about 0%; trying to get as much 'pre-admission' paperwork done at Perkins as we can this week.
*boing* *boing* *bounce* *bounce* happy mama happy
Packets mailed to collaborative & Perkins today. Official collaborative visit 9:30 Friday morning. Principal & team leader know the likelihood of us choosing that program is about 0%; trying to get as much 'pre-admission' paperwork done at Perkins as we can this week.
*boing* *boing* *bounce* *bounce* happy mama happy
Sunday, April 01, 2007
Marlborough wrap-up meeting tomorrow
Out of town Wednesday night through yesterday evening at the regional music therapy conference in Newport. Andey & boys joined me Friday & Saturday. I basically bounced around like tigger all of Wednesday after we found out Marlborough said "uncle." Popped champagne with Lisa & John Wednesday night & with Carylbeth, Michele & Laurie Thursday night. Highly important to acknowledge the best news we've had in three years.
Joa had a great weekend, relishing in his brother's good fortune & his moms' energy & joy. He co-MC'd the traditional conference cabaret in his white tuxedo, with tails. Stunningly handsome. Lars has been up & down: bad day Friday, then high-maintenance interspersed with pain Saturday & this morning. By this afternoon he was pain-free & charming again. Lars was so miserable upon arrival in Newport Friday it took him nearly an hour to calm enough to recognize I was there with him.
Tomorrow is wrap-up meeting with Marlborough schools wherein they approve Lars' referral to an outside placement. I believe they have to send packets to different schools & we may have to go observe several as a formality. They already called Perkins last week: "if we should have to make a referral on Monday, would you have space for a three-year-old?" We have a message detailing what they'll need from us, and we hope to get the process rolling quickly. No idea how long transportation will take to arrange.
When I think about the reality of it, I'm truly so excited I can hardly contain myself. Such a dramatic turn-around. Three weeks ago I kept thinking, "No matter what I do, it seems I can't keep him comfortable/out of pain-free & I can't get him the right educational placement." It was devastating. Now we're down to an occasional bad day (even a bad day now isn't as bad as it was) & the best educational placement we could hope for. It's downright thrilling.
My take on the combination of factors that turned the school tide:
-no TVI
-saw him in person & how he didn't fit their classroom; witnessed pain & fussiness
-having observed Lars in the classroom, we could give many specific examples of how & why its not the right place
-the applesauce story
-no TVI
-Suzie calling principal after we felt slimed by team leader
-above call led to meeting with principal & team leader together wherein principal was warm & easy to talk with & listened & understood & showed her true mensch colors
-overall civility of our approach & our advocate's too
-no TVI
-keeping my"'I've-worked-in-special-ed-for-a-number-of-years" and my 'I'm-in-the-TVI-program-@-UMass" cards in my pocket until last week's meeting, and then playing them
-no TVI
-advocate then calling principal the morning after the meeting & saying she's recommending to us that we go to hearing if the team doesn't come to consensus that an outside placement is in his best interest
-no TVI
Joa had a great weekend, relishing in his brother's good fortune & his moms' energy & joy. He co-MC'd the traditional conference cabaret in his white tuxedo, with tails. Stunningly handsome. Lars has been up & down: bad day Friday, then high-maintenance interspersed with pain Saturday & this morning. By this afternoon he was pain-free & charming again. Lars was so miserable upon arrival in Newport Friday it took him nearly an hour to calm enough to recognize I was there with him.
Tomorrow is wrap-up meeting with Marlborough schools wherein they approve Lars' referral to an outside placement. I believe they have to send packets to different schools & we may have to go observe several as a formality. They already called Perkins last week: "if we should have to make a referral on Monday, would you have space for a three-year-old?" We have a message detailing what they'll need from us, and we hope to get the process rolling quickly. No idea how long transportation will take to arrange.
When I think about the reality of it, I'm truly so excited I can hardly contain myself. Such a dramatic turn-around. Three weeks ago I kept thinking, "No matter what I do, it seems I can't keep him comfortable/out of pain-free & I can't get him the right educational placement." It was devastating. Now we're down to an occasional bad day (even a bad day now isn't as bad as it was) & the best educational placement we could hope for. It's downright thrilling.
My take on the combination of factors that turned the school tide:
-no TVI
-saw him in person & how he didn't fit their classroom; witnessed pain & fussiness
-having observed Lars in the classroom, we could give many specific examples of how & why its not the right place
-the applesauce story
-no TVI
-Suzie calling principal after we felt slimed by team leader
-above call led to meeting with principal & team leader together wherein principal was warm & easy to talk with & listened & understood & showed her true mensch colors
-overall civility of our approach & our advocate's too
-no TVI
-keeping my"'I've-worked-in-special-ed-for-a-number-of-years" and my 'I'm-in-the-TVI-program-@-UMass" cards in my pocket until last week's meeting, and then playing them
-no TVI
-advocate then calling principal the morning after the meeting & saying she's recommending to us that we go to hearing if the team doesn't come to consensus that an outside placement is in his best interest
-no TVI
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