Tuesday, January 12, 2010
A Fun New Game
Fortunately, for every "I can't believe I drive 2.5 hours for THIS!" AV therapy session, there are a number of good, beneficial sessions. This week we played an awesome game called "Look Who's Listening!". Noah really rocked the discrimination tasks as always and the auditory memory tasks were good practice without him noticing that he was learning. If only every thereapy session could go that well. I guess when you're dealing with kids more good that bad is probably a better goal. Anyway, check out that game!
Wednesday, January 6, 2010
A dishonorable discharge?
Miss Carol says there's nothing else she can do.
Noah's making good progress with self-feeding - generalizing the skill could take months. He'll eventually learn to "scoop and lift" with his spoon. It'll just take time.
Noah's just not ready to chew. He is still at basically the same place he was back when he started the day program almost 3 years ago. We failed. Prematurity sucks.
We have made lots of progress in the last 3 years. Noah has gained 15 lbs and is on the charts for both height and weight. He used to vomit 10-15x/day, now it's just a few times a week. His reflux is finally under control.
When Noah started the day program in March of 2007 he drank 2.5-3 oz of formula 7 times a day (half of that was dreamfed). Now he drinks 4.5 oz of formula and eats 6 oz of pureed table foods 5 times a day. He has favorite foods! That's not something I ever thought would happen.
But he just won't chew. Can't chew? Who knows. We failed.
She says we're just taking a break. Give him a few months/years. When he's ready we'll come back and pick up right where we left off. I don't believe her. She's been saying "if" he chews instead of "when" for a long time now. She cried and hugged me when we left today. I don't think she believes he'll ever chew. I don't think I believe it either.
Prematurity sucks.
Noah's making good progress with self-feeding - generalizing the skill could take months. He'll eventually learn to "scoop and lift" with his spoon. It'll just take time.
Noah's just not ready to chew. He is still at basically the same place he was back when he started the day program almost 3 years ago. We failed. Prematurity sucks.
We have made lots of progress in the last 3 years. Noah has gained 15 lbs and is on the charts for both height and weight. He used to vomit 10-15x/day, now it's just a few times a week. His reflux is finally under control.
When Noah started the day program in March of 2007 he drank 2.5-3 oz of formula 7 times a day (half of that was dreamfed). Now he drinks 4.5 oz of formula and eats 6 oz of pureed table foods 5 times a day. He has favorite foods! That's not something I ever thought would happen.
But he just won't chew. Can't chew? Who knows. We failed.
She says we're just taking a break. Give him a few months/years. When he's ready we'll come back and pick up right where we left off. I don't believe her. She's been saying "if" he chews instead of "when" for a long time now. She cried and hugged me when we left today. I don't think she believes he'll ever chew. I don't think I believe it either.
Prematurity sucks.
Monday, January 4, 2010
AV Therapy (aka banging my head against a wall)
Overheard in AV Therapy today...
Therapist: "Look at all these hats for Mr. Potato head." [lets Noah hold each hat and then puts them just out of reach] "Mommy, which hat do you want?"
Mommy: "I want the red hat with the flower."
Therapist: "Noah, which hat would you like?"
Noah: "The blue cowboy hat"
Therapist: "Tell me in a sentence please."
Noah: "Do you want the blue cowboy hat?"
Therapist: "No thank you. Which hat do you want?"
Noah: "You [points to self] wants the blue cowboy hat. That one. [points to blue cowboy hat]
Mommy (modeling): "I want the blue cowboy hat, Miss Sarah." [Miss Sarah hands the correct hat to Mommy and then Sarah/Mommy takes turns modeling the expected script for a few minutes]
Therapist: "Which hat do you want, Noah?"
Noah: "Do you want the blue cowboy hat?"
Therapist: "No, thank you."
Noah (obviously frustrated): "Noah [points to self] wants the blue cowboy hat on Mommy's potato [points to blue cowboy hat that Mommy's potato is wearing] on Noah's potato." [points to still empty spot on his potato]
Therapist: "Noah, why don't you try to start your sentence with 'I want...'
Noah: "...the blue cowboy hat"
Therapist: "Use a complete sentence. 'I want...'"
Noah: "...the blue cowboy hat."
Therapist: "Say the whole thing. 'I want the blue cowboy hat.'"
Noah. "Yes! That one!" [points to hat]
Mommy: "Noah, if you want the blue cowboy hat, what do you need to say?"
Noah: "I want the blue cowboy hat."
(A similar conversation occured for each item that Mr. Potato head wears)
Getting this child to speak correctly is going to be the death of me.
Therapist: "Look at all these hats for Mr. Potato head." [lets Noah hold each hat and then puts them just out of reach] "Mommy, which hat do you want?"
Mommy: "I want the red hat with the flower."
Therapist: "Noah, which hat would you like?"
Noah: "The blue cowboy hat"
Therapist: "Tell me in a sentence please."
Noah: "Do you want the blue cowboy hat?"
Therapist: "No thank you. Which hat do you want?"
Noah: "You [points to self] wants the blue cowboy hat. That one. [points to blue cowboy hat]
Mommy (modeling): "I want the blue cowboy hat, Miss Sarah." [Miss Sarah hands the correct hat to Mommy and then Sarah/Mommy takes turns modeling the expected script for a few minutes]
Therapist: "Which hat do you want, Noah?"
Noah: "Do you want the blue cowboy hat?"
Therapist: "No, thank you."
Noah (obviously frustrated): "Noah [points to self] wants the blue cowboy hat on Mommy's potato [points to blue cowboy hat that Mommy's potato is wearing] on Noah's potato." [points to still empty spot on his potato]
Therapist: "Noah, why don't you try to start your sentence with 'I want...'
Noah: "...the blue cowboy hat"
Therapist: "Use a complete sentence. 'I want...'"
Noah: "...the blue cowboy hat."
Therapist: "Say the whole thing. 'I want the blue cowboy hat.'"
Noah. "Yes! That one!" [points to hat]
Mommy: "Noah, if you want the blue cowboy hat, what do you need to say?"
Noah: "I want the blue cowboy hat."
(A similar conversation occured for each item that Mr. Potato head wears)
Getting this child to speak correctly is going to be the death of me.
Friday, January 1, 2010
The End of a Decade
As we begin a new decade I find myself reminiscing about the last 10 years. In January of 2000 I was living in West Seneca, NY about to start my student teaching in Buffalo while my (future) husband was doing a semester abroad in London. I tried to find a picture from that time, but
I don't have anything that old scanned on this computer.
In 2003 I got married to my best friend and less than 2 years later (although it should've been a bit more) we became parents. I left my career as a school teacher to be a stay at home teacher to one very special little boy.
Way back in 2000 my dream was to teach in an inner city school for a few years while I got my masters and then go on to get a doctorate and do lots of fun educational research. Higher education dreams made room for a bit of real life, but I think my little research project is turning out well so far.
Maybe someday I'll revisit those dreams, but they don't seem as important to me as they once were. Funny how things change, isn't it?
Friday, November 27, 2009
Feeding: We'll Get There Someday!
November 2008
November 2009
I look at these videos and think "Wow, he's made so much progress!". He really has worked hard this year. But then I remember that the difference between being able to take one bite semi-independently and taking 3 in a row with minimal prompting* takes no time at all for a normal kid, and happens a whole lot sooner than 4.5. Next year: chewing (I hope).
*minimal prompting for Noah = turning off the TV rather than a verbal cue.
Tuesday, November 17, 2009
November 17
Today is Prematurity Awareness Day.
Four years ago today Noah had recently been transferred to HSC Pediatric Center's "Preemie Express" unit. He was on one liter of O2, having recently graduated from Vapotherm, and a Kangaroo pump fed him through his NG tube at 10 CCs/hour. Noah screamed constantly due to his uncontrolled reflux and Methidone and Ativan weaning. He was only calm when I was able to drive the 3 hours each day to be with him. Noah's hearing loss had progressed to the point that the only sound he responded to was the loud, low beep of an unhappy monitor, and his exotropia and nystagmus made it nearly impossible for him to focus his eyes. Months of heavy ventilator tubing weighing him down left Noah unable to turn his head from side to side. Noah was nearly 6 months old, but the only time he had been out of a hospital was for 1 medflight and 1 ambulance ride.
Although some preemies have an easier time than Noah, prematurity is never easy.
Four years ago today Noah had recently been transferred to HSC Pediatric Center's "Preemie Express" unit. He was on one liter of O2, having recently graduated from Vapotherm, and a Kangaroo pump fed him through his NG tube at 10 CCs/hour. Noah screamed constantly due to his uncontrolled reflux and Methidone and Ativan weaning. He was only calm when I was able to drive the 3 hours each day to be with him. Noah's hearing loss had progressed to the point that the only sound he responded to was the loud, low beep of an unhappy monitor, and his exotropia and nystagmus made it nearly impossible for him to focus his eyes. Months of heavy ventilator tubing weighing him down left Noah unable to turn his head from side to side. Noah was nearly 6 months old, but the only time he had been out of a hospital was for 1 medflight and 1 ambulance ride.
Although some preemies have an easier time than Noah, prematurity is never easy.
November 17, 2005
Tuesday, November 10, 2009
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