It makes me smile to see Lauren prove "you go where you look". She looks down then she sits down...
Wednesday, April 29, 2009
We caught it on tape!
Last week I took the video camera with me to Lauren's PT appointment. No one else has gone with us so part of my intent was to capture a bit of what happens during our hour. To my joy, Lauren decided this was a great day to show off her walking. In the movie, Lauren starts with Amy, our PT and ends in front of Renee who is a student on placement with Amy at KidsAbility.
It makes me smile to see Lauren prove "you go where you look". She looks down then she sits down...
It makes me smile to see Lauren prove "you go where you look". She looks down then she sits down...
Tuesday, April 28, 2009
And the (my) world rejoices!
Hooray for Lauren!
Our Infant Development support worker, Bonnie, was here this morning. She completed an assessment of Lauren's abilities and created a few 'tests' for her most of which she passed with flying colours. We went through a number of task oriented questions like: "Does Lauren follow instructions such as 'go to your room and get such-and-such'?" which is a resounding "No." I clarified, "She's not mobile. It would take her so long to get there, she would forget the original task."
As well, Lauren is expected to have eight words in addition to "Mommy" and "Daddy". First of all, she doesn't say "Mommy" or "Daddy" (plus we're Mama and Papa) so that takes us down a couple. She does however sign "More" and "Finished" which I think should count for something significant.
In the end Bonnie said the test results have Lauren delayed for language and gross motor skills but fine for everything else. Gee. Behind for gross motor development. Really? And language? No. You don't say... oops. Sorry about the sarcasm dripping off the page...
When I was filing the paperwork later in the day, I reread the notes which included a reference to 'completing the 16 month assessment test'. Um... Hello? Lauren is only 14 months old. Does that mean she's two months ahead on the 'everything else'?
Our really huge celebration honours her "delay" in gross motor development.Tonight while Kevin and Roman were watching TV before bed, I came into the living room to find Lauren standing in the walk way facing away from anything she might have used pull herself up. She then took two stork-like steps and fell-sat down. She promptly put her forehead on the floor between her hands, hoisted her butt in the air, planted her feet and stood up with the most amazing look of accomplishment on her face. She then took more steps, sat down and repeated it all again. Three times in total. I am so impressed!
There's a part of me that doesn't want to share the news knowing how hard it is for our friends whose children also have Noonan Syndrome to hear. But I also know that each of you are the first ones to do the happy dance with us knowing first hand how hard Lauren has worked to get here. Lauren and I send big hugs to all as we jump up and down with joy. I am very excited and just a weeeeee bit terrified.
Our Infant Development support worker, Bonnie, was here this morning. She completed an assessment of Lauren's abilities and created a few 'tests' for her most of which she passed with flying colours. We went through a number of task oriented questions like: "Does Lauren follow instructions such as 'go to your room and get such-and-such'?" which is a resounding "No." I clarified, "She's not mobile. It would take her so long to get there, she would forget the original task."
As well, Lauren is expected to have eight words in addition to "Mommy" and "Daddy". First of all, she doesn't say "Mommy" or "Daddy" (plus we're Mama and Papa) so that takes us down a couple. She does however sign "More" and "Finished" which I think should count for something significant.
In the end Bonnie said the test results have Lauren delayed for language and gross motor skills but fine for everything else. Gee. Behind for gross motor development. Really? And language? No. You don't say... oops. Sorry about the sarcasm dripping off the page...
When I was filing the paperwork later in the day, I reread the notes which included a reference to 'completing the 16 month assessment test'. Um... Hello? Lauren is only 14 months old. Does that mean she's two months ahead on the 'everything else'?
Our really huge celebration honours her "delay" in gross motor development.Tonight while Kevin and Roman were watching TV before bed, I came into the living room to find Lauren standing in the walk way facing away from anything she might have used pull herself up. She then took two stork-like steps and fell-sat down. She promptly put her forehead on the floor between her hands, hoisted her butt in the air, planted her feet and stood up with the most amazing look of accomplishment on her face. She then took more steps, sat down and repeated it all again. Three times in total. I am so impressed!
There's a part of me that doesn't want to share the news knowing how hard it is for our friends whose children also have Noonan Syndrome to hear. But I also know that each of you are the first ones to do the happy dance with us knowing first hand how hard Lauren has worked to get here. Lauren and I send big hugs to all as we jump up and down with joy. I am very excited and just a weeeeee bit terrified.
Thursday, April 23, 2009
Finally!
The living room window faces West North-West. Billie has been waiting through a very long, very cold winter for this moment...
Tuesday, April 21, 2009
Saturday, April 18, 2009
Hooray for Spring!
We've had some beautiful days lately. Finally we get to play outside without parkas!
This week Lauren's regular physiotherapy appointment included time with Paula the Occupational Therapist. Paula saw Lauren about a month ago and gave us some specific activities to work on to build Lauren's shoulder strength and hand structure.
She was thrilled with Lauren's progress. Lauren showed off all her party tricks - getting goldfish out of her SnackTrap, "walking" three steps to get her favourite cars off the bench, chugging back lots of water from her sippy cup and weight bearing on her hands.
Paula noticed that Lauren seems to favour one side over the other but neither Amy nor Paula could figure out why. Amy tried having Lauren stand like a flamingo - one foot firmly planted, the other bent at the knee so her toes touched the opposite knee. No matter which foot was down, Lauren seemed to handle the balancing just fine. This meant that any favouritism isn't caused by muscle issues. This is good. If she's choosing to use one leg more frequently or to roll a certain way but her strength is still developing equally then all is good. Or at least, that's my understanding.
We now need to work on wrist twisting motions for turning knobs or, in her case, orienting puzzle pieces to fit their assigned spaces. She can already match up the animals, now she just need to get them facing the right way to slide in properly.
We also saw the eye doctor this week and there's no change there. At our next visit in three months we'll do the full dilation exam again to be sure nothings developing behind the scenes.
Over all Lauren hasn't been sleeping or napping well at all (only one 30 minute nap at 11am this morning.... argh.). Lately I've been pondering whether sleep apnea is an issue for her. Ironically a few other friends who have children Lauren's age also with Noonan Syndrome have said similar things or have had their doctors consider it. We see the pediatrician in May so will leave it til then. We've gone this long with poor sleep, what's another month?
On the plus side, she did take three or four steps on her own to get from me to the stool where the cat was sitting... Kitty was much less impressed than we were!
This week Lauren's regular physiotherapy appointment included time with Paula the Occupational Therapist. Paula saw Lauren about a month ago and gave us some specific activities to work on to build Lauren's shoulder strength and hand structure.
She was thrilled with Lauren's progress. Lauren showed off all her party tricks - getting goldfish out of her SnackTrap, "walking" three steps to get her favourite cars off the bench, chugging back lots of water from her sippy cup and weight bearing on her hands.
Paula noticed that Lauren seems to favour one side over the other but neither Amy nor Paula could figure out why. Amy tried having Lauren stand like a flamingo - one foot firmly planted, the other bent at the knee so her toes touched the opposite knee. No matter which foot was down, Lauren seemed to handle the balancing just fine. This meant that any favouritism isn't caused by muscle issues. This is good. If she's choosing to use one leg more frequently or to roll a certain way but her strength is still developing equally then all is good. Or at least, that's my understanding.
We now need to work on wrist twisting motions for turning knobs or, in her case, orienting puzzle pieces to fit their assigned spaces. She can already match up the animals, now she just need to get them facing the right way to slide in properly.
We also saw the eye doctor this week and there's no change there. At our next visit in three months we'll do the full dilation exam again to be sure nothings developing behind the scenes.
Over all Lauren hasn't been sleeping or napping well at all (only one 30 minute nap at 11am this morning.... argh.). Lately I've been pondering whether sleep apnea is an issue for her. Ironically a few other friends who have children Lauren's age also with Noonan Syndrome have said similar things or have had their doctors consider it. We see the pediatrician in May so will leave it til then. We've gone this long with poor sleep, what's another month?
On the plus side, she did take three or four steps on her own to get from me to the stool where the cat was sitting... Kitty was much less impressed than we were!
Wednesday, April 8, 2009
The Beat Goes On
On Saturday we attended a one hour African drumming workshop hosted by KidsAbility which is where Lauren's PT and OT services for Noonan Syndrome are covered. It was reasonably priced and it was a whole family event.Lauren loves making music. She has a little drum of her own, maracas and a tambourine and plays with the drum at least once a day. She often bangs the sticks together before drumming as if 'counting in'. I decided the workshop would be a blast for her regardless of how hesitant Roman is the face of new things.
Lauren LOVED it. Loved loved loved it!
The drums, djembes, were almost as tall as she is but right away she knew to slap the skin with her palms. I held her up a bit so she could easily put her weight behind her taps and she was having a fabulous time.
The instructor, Fule Badoe, was compelling and enthusiastic. For the first 20 to 25 minutes he taught us how to utilize the different tones and sounds of the drum, taught some specific rhythms and then worked it all into a full sound that everyone was participating in. As soon as the final 10 minute, full room drumming ended - and I mean INSTANTLY - Lauren popped her hands up and signed "MORE!".
On so many levels it was an amazing experience, not the least of which was Lauren's joy and my knowledge that she truly does know what "More" means and when to ask for it!
Friday, April 3, 2009
Up-Down
It has been an up-down kind of week, just like it's been an up-down kind of winter.
Things have improved dramatically in many ways, meanwhile, sleep has descended into the third realm off hell. It's no one's fault unless we can hold the Tooth Fairy accountable. I'm pretty sure s/he'd hold us liable if we started spreading that rumour around.
The improvements have been in Lauren's diet, mobility and general attitude.
Foodwise, we're slowing moving into more solids, less mushy foods. She LOVES cheese (I think it's her third word!) and cinnamon-raisin bread with butter. She's also big on carrot-pineapple muffins and bits of pizza crust with sauce. She's no longer nursing which has been a mixed blessing. I think it was a bit harder for me to give up than Lauren but it has made an improvement to her sleep pattern. It's been two and a half weeks and she's only been up in the night with gas pains two, maybe three times. She's been up for other reasons but at least it hasn't been abdominal pain!
Movement wise, physiotherapy continues to make a HUGE improvement on her strength and mobility. She can and does pull herself up on just about anything - the couch, toys, toy baskets, me, Roman... I'm pretty sure she even tried to use the cat as leverage one day last week. Billie was not impressed.
We, Amy-the-physiotherapist and I, have collectively agreed that Lauren is going to skip the crawling stage and we are both fine and even happy with that. Lauren is determined to walk. She's borderline on solo, unsupported steps. Getting her onto hands and knees includes wails of anger and frustration along with her forehead resting on the floor. Her pumpkin noggin is just too heavy for her to keep up when in that position. More room for brain matter but tough on the neck muscles.
The importance of crawling for the development of hand physiology and shoulder strength will have to be compensated for some other way. And we're fine with that. You should see Lauren's face when she gets up to standing and is able to stay there for a few seconds without holding on. This week she's starting to stand up and throw her hands in the air as if saying "TA DA!"
She also puts her hands on her head as if to say, "Oh my goodness!" which is what I do say. Now she puts her hands on her head when I say it as well as to get me to say it. The accompanying smiles make it all worthwhile.
Today's 'milestone' was doing a puzzle. We have a M&D puzzle with block style safari animals. Lauren had the zebra in her hand. When I asked her where it goes she put it on the place where the zebra should go. She hasn't figured out how to orient the pieces to fit into the pockets yet but she knows where to put all of them. When Roman tried to help her by putting the crocodile in, she barked, pushed him away, took it out and did it herself. When she was putting that same crocodile in another time, it was face down. She stopped, turned it over in her hands and tried again.
How proud am I?!?
It's like all the lights have been turned on and the party's getting started!
Things have improved dramatically in many ways, meanwhile, sleep has descended into the third realm off hell. It's no one's fault unless we can hold the Tooth Fairy accountable. I'm pretty sure s/he'd hold us liable if we started spreading that rumour around.
The improvements have been in Lauren's diet, mobility and general attitude.
Foodwise, we're slowing moving into more solids, less mushy foods. She LOVES cheese (I think it's her third word!) and cinnamon-raisin bread with butter. She's also big on carrot-pineapple muffins and bits of pizza crust with sauce. She's no longer nursing which has been a mixed blessing. I think it was a bit harder for me to give up than Lauren but it has made an improvement to her sleep pattern. It's been two and a half weeks and she's only been up in the night with gas pains two, maybe three times. She's been up for other reasons but at least it hasn't been abdominal pain!
Movement wise, physiotherapy continues to make a HUGE improvement on her strength and mobility. She can and does pull herself up on just about anything - the couch, toys, toy baskets, me, Roman... I'm pretty sure she even tried to use the cat as leverage one day last week. Billie was not impressed.
We, Amy-the-physiotherapist and I, have collectively agreed that Lauren is going to skip the crawling stage and we are both fine and even happy with that. Lauren is determined to walk. She's borderline on solo, unsupported steps. Getting her onto hands and knees includes wails of anger and frustration along with her forehead resting on the floor. Her pumpkin noggin is just too heavy for her to keep up when in that position. More room for brain matter but tough on the neck muscles.
The importance of crawling for the development of hand physiology and shoulder strength will have to be compensated for some other way. And we're fine with that. You should see Lauren's face when she gets up to standing and is able to stay there for a few seconds without holding on. This week she's starting to stand up and throw her hands in the air as if saying "TA DA!"
She also puts her hands on her head as if to say, "Oh my goodness!" which is what I do say. Now she puts her hands on her head when I say it as well as to get me to say it. The accompanying smiles make it all worthwhile.
Today's 'milestone' was doing a puzzle. We have a M&D puzzle with block style safari animals. Lauren had the zebra in her hand. When I asked her where it goes she put it on the place where the zebra should go. She hasn't figured out how to orient the pieces to fit into the pockets yet but she knows where to put all of them. When Roman tried to help her by putting the crocodile in, she barked, pushed him away, took it out and did it herself. When she was putting that same crocodile in another time, it was face down. She stopped, turned it over in her hands and tried again.
How proud am I?!?
It's like all the lights have been turned on and the party's getting started!
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