Thursday brought another appointment with Amy, the physiotherapist. Roman's preschool was closed for March Break so he came along too and was an absolute angel thank goodness!
In addition to PT, Lauren is now seeing Paula, the Occupational Therapist. It's great that the wait for her services wasn't as long as we expected.
For this appointment, because it's the first time Paula has had with Lauren since the initial assessment, most of the time was spent showing Lauren's tricks and assessing what areas need attention with respect to her fine motor skills. Paula was thrilled with Lauren's progress. Amy and I are too. It was reaffirming to have a professional who saw Lauren just 6 weeks ago give us unbiased feedback.
Lauren spent the time showing how she can pull herself up, cruise, walk with help, get to standing from sitting on my lap and from squatting (so long as I support her calves) and take some steps with me lightly holding her hips. She can also get to sitting from her belly though hasn't quite figured out that if she's on her back she can roll over and then sit up. Given the hyper-extensible joints and low muscle tone common with Noonan Syndrome, she's progressing really quickly.
OT wise, we need to work having her look way up tilting her head back as far as she can. This strengthens the upper back/neck muscles to hold her head up when crawling. We also need to work on having her lean way out to the side, put down a hand and rock out to grap things with the opposite hand. This will build her shoulder strength and develop the muscles in her hands. Seems like gross motor skill on the outside but Paula explained the hand muscle development is crucial for holding crayons and utensils properly. We can also spend time with Lauren sitting on a big ball and rocking from side to side to further develop her trunk muscles.
Since I fully expect Lauren to go straight to walking, I asked Amy and Paula about the research linking this skipped stage and reading difficulties later. There is research linking the two however both Amy and Paula said the work is not statistically sound. We discussed also how it's possible that whatever creates the reading problem causes the skip to walking rather than the skip causing the later reading issues. Amy clarified there is strong research into the physical value of crawling building the shoulder muscles which helps with other tasks associated with learning, sitting and writing, writing at the blackboard, etc. but that there is no way to truly prove that progressing straight to walking will cause reading difficulties later on.
This is encouraging. Lauren really wants to move and is building her vertical skills very quickly. She's looking up and out and doesn't seem to have an interest in staying close to the ground. Our goal of having her walking for her next appointment with the Developmental Pediatrician is realistic and I'm very excited about helping Lauren make it happen!
Sunday, March 22, 2009
Tuesday, March 10, 2009
The Tale of the Three Little Ists
We have now had two appointments with the physiotherapist. Lauren has taken to Amy quite easily and is learning very quickly. It has been a huge help for me simply knowing how to teach Lauren how to move. Until Amy showed me how to position Lauren's feet and help her shift her balance, it would never have occurred to me to do it at all. It's amazing what we take for granted - sitting up, getting up, rolling over - all the things we probably taught ourselves or learned by trying.
Roman learned to put himself into a sitting position after he learned to crawl. He would get onto all fours then back himself to sitting. I figured Lauren would be the same. Turns out Lauren should be able to get into a seated position from her side or her belly. And now I know how to help her. AND she's starting to do it on her own! Just tonight she flopped onto her belly when reaching for a toy then pushed herself up and over a leg to get back onto her bum. She is so proud of herself - you can see it in her face.
We'll see Amy every week for the next few and see how things go. Amy thinks Lauren is ready to be on all fours so Thursday will bring interesting challenges!
Yesterday we had an appointment with an audiologist. At our development assessment at the beginning of February Lauren wasn't responding to her name when called quietly from her left side. We were referred to an audiologist with plans for an annual checkup. Lynn, the audiologist, confirmed for me that Noonan Syndrome doesn't cause neurological hearing loss but because of the altered ear positioning, chronic ear infections can be a problem with serious complications.
The appointment went well enough but results are inconclusive. Lauren didn't respond in the anticipated manner for noises played separately in each ear nor did she startle to a very loud noise. With Lauren's ear position and small ear canals, it was also hard for Lynn to get echo test results or drum movement results. It's possible that Lauren's developmental stage is impacting her reactions, or lack thereof, and, since she's had colds recently, she could have fluid build up preventing the drums from moving properly.
Lynn says it's obvious she's hearing as she responds to me and, since she passed her infant screening tests, all should be well. Lauren is also starting to build a vocabulary which further confirms she is hearing. We've booked another appointment for May and will have the doctor check her ears for fluid build up in the meantime. As it is, we're in the midst of yet another cold so it might as well wait till this one clears.
Today we saw the cardiologist for what is to be a routine visit and Lauren was amazing! All through the ECG she was quiet and still. She was lounging against my chest holding an index finger in each hand watching the ultrasound monitor. Not a peep for about 15 minutes. Next she had 8 or 10 monitor strips on her body all with wires to obtain a record of her rhythm. She was not happy about all the sticky patches but once they were in place she settled, watched the Dr. tell a little story to keep her quiet and poof! test number 2 was done.
This appointment gave us some great news in that nothing has changed. Some might think it odd that I consider no change as "good" but it means that her heart is still functioning the way it should. Nothing has gotten worse. Nothing needs to be watched more closely and nothing needs to be surgically altered. Nothing, in this instance, is all good. What we anticipated to be semi-annual checkups from now until infinity are now only annual. This too is good news though severely cuts into my Red Lobster consumption. Since the doctor's office is an hour away and we need to avoid Toronto rush hour traffic, our appointments are generally late morning. This makes lunch at Red Lobster, just down the road, the perfect indulgence. Only going once per year means lunch out is less likely at least until Lauren is old enough to enjoy it herself. It seems a bit silly to anticipate but I look forward to having mom-daughter days whenever we have the appointments.
Roman learned to put himself into a sitting position after he learned to crawl. He would get onto all fours then back himself to sitting. I figured Lauren would be the same. Turns out Lauren should be able to get into a seated position from her side or her belly. And now I know how to help her. AND she's starting to do it on her own! Just tonight she flopped onto her belly when reaching for a toy then pushed herself up and over a leg to get back onto her bum. She is so proud of herself - you can see it in her face.
We'll see Amy every week for the next few and see how things go. Amy thinks Lauren is ready to be on all fours so Thursday will bring interesting challenges!
Yesterday we had an appointment with an audiologist. At our development assessment at the beginning of February Lauren wasn't responding to her name when called quietly from her left side. We were referred to an audiologist with plans for an annual checkup. Lynn, the audiologist, confirmed for me that Noonan Syndrome doesn't cause neurological hearing loss but because of the altered ear positioning, chronic ear infections can be a problem with serious complications.
The appointment went well enough but results are inconclusive. Lauren didn't respond in the anticipated manner for noises played separately in each ear nor did she startle to a very loud noise. With Lauren's ear position and small ear canals, it was also hard for Lynn to get echo test results or drum movement results. It's possible that Lauren's developmental stage is impacting her reactions, or lack thereof, and, since she's had colds recently, she could have fluid build up preventing the drums from moving properly.
Lynn says it's obvious she's hearing as she responds to me and, since she passed her infant screening tests, all should be well. Lauren is also starting to build a vocabulary which further confirms she is hearing. We've booked another appointment for May and will have the doctor check her ears for fluid build up in the meantime. As it is, we're in the midst of yet another cold so it might as well wait till this one clears.
Today we saw the cardiologist for what is to be a routine visit and Lauren was amazing! All through the ECG she was quiet and still. She was lounging against my chest holding an index finger in each hand watching the ultrasound monitor. Not a peep for about 15 minutes. Next she had 8 or 10 monitor strips on her body all with wires to obtain a record of her rhythm. She was not happy about all the sticky patches but once they were in place she settled, watched the Dr. tell a little story to keep her quiet and poof! test number 2 was done.
This appointment gave us some great news in that nothing has changed. Some might think it odd that I consider no change as "good" but it means that her heart is still functioning the way it should. Nothing has gotten worse. Nothing needs to be watched more closely and nothing needs to be surgically altered. Nothing, in this instance, is all good. What we anticipated to be semi-annual checkups from now until infinity are now only annual. This too is good news though severely cuts into my Red Lobster consumption. Since the doctor's office is an hour away and we need to avoid Toronto rush hour traffic, our appointments are generally late morning. This makes lunch at Red Lobster, just down the road, the perfect indulgence. Only going once per year means lunch out is less likely at least until Lauren is old enough to enjoy it herself. It seems a bit silly to anticipate but I look forward to having mom-daughter days whenever we have the appointments.
Wednesday, March 4, 2009
In Like a Lamb in the Freezer
I'm not sure why January and February are in the calendar. Seriously. January is all about 'coming down' and recovering from the chaos of Christmas. It's cold. Miserable. Snow covered. Did I mention cold?
February isn't any better. It teased us with a spring-like thaw and jacket optional weather. Now we can see where the lawn should be and simultaneously slip and crack something open where that which was thawed promptly froze over again. Think "The Day After Tomorrow".
I propose we remove both months from the calendar and see how things improve.
But it's not just the weather that gets me down these days.
The approach to Lauren's birthday was difficult and frustrating. We have friends with children the same age as our two. It was exciting to think about all of us growing together. Parents visiting, kids having playmates they've known for years...They, of course, were celebrating 1 year birthdays too. As much as I love my friends, I was happy to NOT witness any of the joyous events.
It's been hard enough seeing people in general when they have children, especially girls, the same age as Lauren. To see the children walking, chattering, laughing, eating anything and everything... and to hear about children who sleep, actually sleep, significant periods of time, is demoralizing.
When I keep to my tight little world or in Roman's 3 year old world of pre-school and library programme, I do okay. When we visit with families whose youngest is a few month older than Lauren, we have a pretty good time too. I know it sounds ridiculous but any child who's a few months older than Lauren is supposed to be ahead of her in every way and so we can rejoice in seeing them grow. Those that are really close to her age though simply remind me of all the things she isn't doing yet.
I ponder repeatedly, "Is it because she's a second child and doesn't get the same focused attention Roman did? Is it because of Noonan Syndrome? Is it just who she is?"
I had a counseling session with my NP last week. From her perspective, everything I'm struggling with is consistent with all mothers of two (or more) children and that to her eyes, Lauren is doing great. She stands well enough with support and is starting to cruise. Her recommendation was for me to find a mommy/playgroup with children the same age as mine to find other moms with shared experiences.
I know she means well. I know as well that she has two children of her own so has some perspective on the matter.
Yes. I am a mom of two young children. I'm happy to relate to other moms on that point. It would however be helpful if they were also SAHMs whose second child has a genetic condition causing physical and developmental delays.
Lauren is doing great. She's beautiful and she is still within 'normal' range for development - someone has to be at the tail end to make averages. I have to wonder though. If all is 'normal', why are we seeing the physical therapist weekly. And the occupational therapist... and the language pathologist.. and the ophthalmologist, endocrinologist, audiologist and cardiologist? Perhaps I should simply refer to them as the 'ists'?
As for another play group... I haven't quite decided this one yet. I spent some time trying to form one to connect with other moms in the same situation. I met with limited success. I'm also reluctant to add another activity to our already busy schedule. Coincidentally though we were invited to a drop-in playgroup that is managed by one of the library moms. It's at the community centre of a hamlet not far from us (Maryhill for those familiar with the area) and has moms with children of all ages. Some of the other library moms and kids are there too which would make it a good socialization option for Roman. For this alone I am tempted. Roman is quite reserved in new environments but he opens up more quickly when he knows other people.
At this point I expect we'll give it a try and see what happens. Since it's drop-in there's no commitment. If it doesn't work out we haven't lost anything. If it does, maybe I'll find some new moms that are worth sharing time with.
And there we are. It's now March and things are looking up at least a little.
But I still think January and February are a waste of paper...
February isn't any better. It teased us with a spring-like thaw and jacket optional weather. Now we can see where the lawn should be and simultaneously slip and crack something open where that which was thawed promptly froze over again. Think "The Day After Tomorrow".
I propose we remove both months from the calendar and see how things improve.
But it's not just the weather that gets me down these days.
The approach to Lauren's birthday was difficult and frustrating. We have friends with children the same age as our two. It was exciting to think about all of us growing together. Parents visiting, kids having playmates they've known for years...They, of course, were celebrating 1 year birthdays too. As much as I love my friends, I was happy to NOT witness any of the joyous events.
It's been hard enough seeing people in general when they have children, especially girls, the same age as Lauren. To see the children walking, chattering, laughing, eating anything and everything... and to hear about children who sleep, actually sleep, significant periods of time, is demoralizing.
When I keep to my tight little world or in Roman's 3 year old world of pre-school and library programme, I do okay. When we visit with families whose youngest is a few month older than Lauren, we have a pretty good time too. I know it sounds ridiculous but any child who's a few months older than Lauren is supposed to be ahead of her in every way and so we can rejoice in seeing them grow. Those that are really close to her age though simply remind me of all the things she isn't doing yet.
I ponder repeatedly, "Is it because she's a second child and doesn't get the same focused attention Roman did? Is it because of Noonan Syndrome? Is it just who she is?"
I had a counseling session with my NP last week. From her perspective, everything I'm struggling with is consistent with all mothers of two (or more) children and that to her eyes, Lauren is doing great. She stands well enough with support and is starting to cruise. Her recommendation was for me to find a mommy/playgroup with children the same age as mine to find other moms with shared experiences.
I know she means well. I know as well that she has two children of her own so has some perspective on the matter.
Yes. I am a mom of two young children. I'm happy to relate to other moms on that point. It would however be helpful if they were also SAHMs whose second child has a genetic condition causing physical and developmental delays.
Lauren is doing great. She's beautiful and she is still within 'normal' range for development - someone has to be at the tail end to make averages. I have to wonder though. If all is 'normal', why are we seeing the physical therapist weekly. And the occupational therapist... and the language pathologist.. and the ophthalmologist, endocrinologist, audiologist and cardiologist? Perhaps I should simply refer to them as the 'ists'?
As for another play group... I haven't quite decided this one yet. I spent some time trying to form one to connect with other moms in the same situation. I met with limited success. I'm also reluctant to add another activity to our already busy schedule. Coincidentally though we were invited to a drop-in playgroup that is managed by one of the library moms. It's at the community centre of a hamlet not far from us (Maryhill for those familiar with the area) and has moms with children of all ages. Some of the other library moms and kids are there too which would make it a good socialization option for Roman. For this alone I am tempted. Roman is quite reserved in new environments but he opens up more quickly when he knows other people.
At this point I expect we'll give it a try and see what happens. Since it's drop-in there's no commitment. If it doesn't work out we haven't lost anything. If it does, maybe I'll find some new moms that are worth sharing time with.
And there we are. It's now March and things are looking up at least a little.
But I still think January and February are a waste of paper...
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