Lauren and I made the trek to McMaster today for her 6 month growth check up.
I find it amazing that we can have the first appointment of the afternoon and still have to wait 20 minutes before we even get into an exam room let alone see the specialist. As usual we were greeted by a resident. Thankfully she was more competent than the last few.
Either this resident is nearing the end of her residency or she is exceptionally capable. I'll even go with "both". P actually took the time to read through the notes on file and ask me questions along the way instead of having me recite Lauren's complete medical history. Again. She also asked questions regarding the practical aspects of Lauren's growth - has she outgrown any clothes or changed shoe sizes and when. It was interesting to have her think as a parent, not as a med student. It's not like I measure Lauren regularly...
What didn't change was how long the appointment took and having the endo pop in, stay for 5 minutes then declare, "well, see you in 6 months..."
The official news hasn't changed. Lauren's current stats: 84.8cm tall and 14.1kg which is 33.4 inches and 31 lbs. She's gained 1.4 inches and one pound in 6 months. She's still hovering under the 25 percentile on the Noonan Syndrome growth charts giving her an expected final height of 4' 8". Quite a bit shy of the 5' they originally forecast. The endocrinologist is happy though. She restated that as long as Lauren is staying on her curve, she's doing well and not urgent intervention is needed.
The doctor's notes on file stated we would be looking at trying another growth hormone stim test but given the limited change to Lauren's size, finding a vein suitable for the repeated blood draws is still going to be difficult. The endo has decided it can wait another year. At that point - when Lauren is 4 1/2 - we'll need to make a decision about what we want for Lauren. Hopefully by then we'll also have a better picture of her heart development and whether HCM (hypertrophic cardiomypathy) is in the works.
For anyone that's counting, being below the 25 percentile on the NS chart means she's not even on the standard charts.
but then we do love being unique in this family.
Saturday, June 25, 2011
Wednesday, June 22, 2011
Two very happy children
Another appropriate title would be "Customer Service is NOT Completely Dead..."
At the beginning of May we began our search for a SpringFree trampoline with tremendously frustrating results (read: NOT bouncing off the walls). The short version: found used trampoline, ordered parts, didn't get trampoline due to insurance snafu by seller, tried to return parts, parts delayed in transit, finally get refund for parts but not shipping and STILL have no trampoline.
Insert a multitude of calls to Megan at SpringFree and the picture is complete though the blog post tells it with much more drama.
The weeks that followed included daily Kijiji searches, emails to sellers, another almost purchase (involving a friend picking it up in Collingwood) that fell through and plenty of time wondering if this was ever going to be something we would have for our kids.
Finally, in my incessant web trolling, I found a listing for a trampoline "bought at Costco..." but no brand listed. Cue angel choirs! The seller confirmed that it was indeed the exact model we were looking for AND it was only 2 years old AND in great shape AND an amazing price.
Having seen so many SFTs snapped up so quickly, I was scrambling to find a way to get all four of us through an hour drive, an hour to disassemble and an hour home again amidst all the rest of our crazy weekend schedule. Cue new angel choir - I offered the seller (a very nice business man with two older kids) an extra cash incentive to disassemble the unit for us. Turned out his schedule was just as crazy as ours so if we could wait a week, all the better and he'd be happy to take it apart for us under those generous circumstances.
The next heavenly sign? Kevin needed to be in Toronto on the following Friday. The selling family would be home when Kevin would be in that area and there would be plenty of time for the seller to take it apart for us.
The week of waiting was tough but when the storms ripped through on Tuesday night taking out many of the neighbour's trees, we finally knew exactly why we didn't yet have our trampoline (or the new deck partly built...). How incredibly frustrating would it have been to have it then promptly have the wind whisk it off to Kansas?
The morning Kevin started to set it up, Roman looked out the window and nonchalantly declared, "Papa's putting together the trampoline." We hadn't said anything about a trampoline least things go madly awry again. "What makes you think it's a trampoline?" I asked.
"What makes you think it's not?" he replies. Smart ass.
We made a video for our favourite SpringFree sales Rep who in turn shared the love with Roman and Lauren, sending a package just for them - accessories for the trampoline, t-shirts and colouring pages.
Seriously! Who does that in business any more? I am still in awe. Okay. So yes. I spent a lot of time with Megan on the phone and on email but they were my problems, not hers and yet I knew she was pulling for us. Guess she really loved the video!
I'm also so happy with the trampoline. Lauren can get in an out herself and I know the kids are safe. I don't worry about them falling, twisting something, getting ripped up in a spring or crashing into a pole. I am in awe of Megan's generousity and support and in how well built this thing is!
So there it is. We're a happy hopping bouncing family. Finally!
At the beginning of May we began our search for a SpringFree trampoline with tremendously frustrating results (read: NOT bouncing off the walls). The short version: found used trampoline, ordered parts, didn't get trampoline due to insurance snafu by seller, tried to return parts, parts delayed in transit, finally get refund for parts but not shipping and STILL have no trampoline.
Insert a multitude of calls to Megan at SpringFree and the picture is complete though the blog post tells it with much more drama.
The weeks that followed included daily Kijiji searches, emails to sellers, another almost purchase (involving a friend picking it up in Collingwood) that fell through and plenty of time wondering if this was ever going to be something we would have for our kids.
Finally, in my incessant web trolling, I found a listing for a trampoline "bought at Costco..." but no brand listed. Cue angel choirs! The seller confirmed that it was indeed the exact model we were looking for AND it was only 2 years old AND in great shape AND an amazing price.
Having seen so many SFTs snapped up so quickly, I was scrambling to find a way to get all four of us through an hour drive, an hour to disassemble and an hour home again amidst all the rest of our crazy weekend schedule. Cue new angel choir - I offered the seller (a very nice business man with two older kids) an extra cash incentive to disassemble the unit for us. Turned out his schedule was just as crazy as ours so if we could wait a week, all the better and he'd be happy to take it apart for us under those generous circumstances.
The next heavenly sign? Kevin needed to be in Toronto on the following Friday. The selling family would be home when Kevin would be in that area and there would be plenty of time for the seller to take it apart for us.
The week of waiting was tough but when the storms ripped through on Tuesday night taking out many of the neighbour's trees, we finally knew exactly why we didn't yet have our trampoline (or the new deck partly built...). How incredibly frustrating would it have been to have it then promptly have the wind whisk it off to Kansas?
The morning Kevin started to set it up, Roman looked out the window and nonchalantly declared, "Papa's putting together the trampoline." We hadn't said anything about a trampoline least things go madly awry again. "What makes you think it's a trampoline?" I asked.
"What makes you think it's not?" he replies. Smart ass.
We made a video for our favourite SpringFree sales Rep who in turn shared the love with Roman and Lauren, sending a package just for them - accessories for the trampoline, t-shirts and colouring pages.
Seriously! Who does that in business any more? I am still in awe. Okay. So yes. I spent a lot of time with Megan on the phone and on email but they were my problems, not hers and yet I knew she was pulling for us. Guess she really loved the video!
I'm also so happy with the trampoline. Lauren can get in an out herself and I know the kids are safe. I don't worry about them falling, twisting something, getting ripped up in a spring or crashing into a pole. I am in awe of Megan's generousity and support and in how well built this thing is!
So there it is. We're a happy hopping bouncing family. Finally!
Monday, June 20, 2011
Trike Lesson
Friday we met with the PT to help Lauren learn to ride her tricycle. It seemed to be taking Lauren a long time to figure it out but we weren`t sure if it was a learning issue or a physical issue.
Turns out it is a driveway issue - both kids.
We took her trike (a sweet little red Radio Flyer) and set her up in the KidsAbility parking lot. Roman was off school as well so we took his bike along. For the first little while, Roman was content to follow along and help Lauren whenever she got stuck - which was fairly often. When Lauren's pedals are in balance, she doesn't have the strength to push forward. Given she has to push both the weight of the tricycle AND herself, I'm not surprised it's so tricky. With the huge parking lot being so flat, she soon learned how to give it a little "rock" and get going on her own. If we can keep her pedaling, her momentum keeps her going.
Once again, how proud am I? I felt a little bad "wasting" our PTs time but she was happy and able to confirm the best ways for us to help keep Lauren going. When she gets stuck, it's best to push on her toes to help reinforce where to put pressure to keep going.
For me, the highlight of the morning was Roman. He was an amazing big brother - the kind of big brother I wish he was ALL the time. Eventually I convinced him to give his bike a ride too. He still has training wheels on but in the big lot was able to get up enough speed, and enough space, to actually balance and keep both support wheels off the ground. He and I were SO proud of his accomplishment. I'm not sure who had the bigger smile. A few more sessions in a big parking lot and I think he'll have it all figured out!
We finished the morning with a stop at Mosborough Market for fresh, local hoophouse tomatoes and some local strawberries. They were divine! Roman and Lauren also discovered the fun play paintings at the market:
The weather was beautiful that afternoon and we joyfully spent it outside, playing and bouncing.... yes! Bouncing!
Turns out it is a driveway issue - both kids.
We took her trike (a sweet little red Radio Flyer) and set her up in the KidsAbility parking lot. Roman was off school as well so we took his bike along. For the first little while, Roman was content to follow along and help Lauren whenever she got stuck - which was fairly often. When Lauren's pedals are in balance, she doesn't have the strength to push forward. Given she has to push both the weight of the tricycle AND herself, I'm not surprised it's so tricky. With the huge parking lot being so flat, she soon learned how to give it a little "rock" and get going on her own. If we can keep her pedaling, her momentum keeps her going.
Once again, how proud am I? I felt a little bad "wasting" our PTs time but she was happy and able to confirm the best ways for us to help keep Lauren going. When she gets stuck, it's best to push on her toes to help reinforce where to put pressure to keep going.
For me, the highlight of the morning was Roman. He was an amazing big brother - the kind of big brother I wish he was ALL the time. Eventually I convinced him to give his bike a ride too. He still has training wheels on but in the big lot was able to get up enough speed, and enough space, to actually balance and keep both support wheels off the ground. He and I were SO proud of his accomplishment. I'm not sure who had the bigger smile. A few more sessions in a big parking lot and I think he'll have it all figured out!
We finished the morning with a stop at Mosborough Market for fresh, local hoophouse tomatoes and some local strawberries. They were divine! Roman and Lauren also discovered the fun play paintings at the market:
The weather was beautiful that afternoon and we joyfully spent it outside, playing and bouncing.... yes! Bouncing!
Sunday, June 19, 2011
Garden update
Spring weather was far from conducive to gardening forcing us to wait longer than usual to start seeding. Seems the garden has made up for it by accelerating germination and growth since.
The beets are showing a dusting of dirt from all the soil tossed up by the rains and sprinklers:
The peas sprouts were eaten by our resident rabbit, or the groundhog we've (not so) affectionately named "Chuck". The snap and snow peas were promptly fenced in and reseeded. The snow peas have since taken off again and our hopes are high the snap peas will recover just as quickly.
The tomatillos, as always, are thriving despite our unwanted and frisky guests:
The sweet peppers have been eaten which seals their fate in our garden - future gardens will be sweet pepper free. The growing season is rarely long enough to be successful and the local market gets flooded with gorgeous fruits for reasonable prices. Same with shallots and potentially tomatoes. We've planted a number of tomato seedlings we started ourselves but this is their last chance. If they succumb to blight again this year we'll allot the space to something else next year.
The carrots, onions and potatoes are beautiful as is the corn interplanted with pole beans, squash and potatoes.
Now we need to find some serious time for weeding.
Thankfully the elderberry bush doesn't care about weeds:
Our last bit of produce joy, the pear tree is gorgeous after its spring pruning and the fruit will be plentiful. Funny I'd never noticed until this spring that the pears grow upwards until they're big enough for gravity to pull them down.
This summer both kids have been "helping" and Roman has asked us to change the sign to include Lauren and Papa...
The beets are showing a dusting of dirt from all the soil tossed up by the rains and sprinklers:
The peas sprouts were eaten by our resident rabbit, or the groundhog we've (not so) affectionately named "Chuck". The snap and snow peas were promptly fenced in and reseeded. The snow peas have since taken off again and our hopes are high the snap peas will recover just as quickly.
The tomatillos, as always, are thriving despite our unwanted and frisky guests:
The carrots, onions and potatoes are beautiful as is the corn interplanted with pole beans, squash and potatoes.
Now we need to find some serious time for weeding.
Thankfully the elderberry bush doesn't care about weeds:
Our last bit of produce joy, the pear tree is gorgeous after its spring pruning and the fruit will be plentiful. Funny I'd never noticed until this spring that the pears grow upwards until they're big enough for gravity to pull them down.
This summer both kids have been "helping" and Roman has asked us to change the sign to include Lauren and Papa...
Sunday, June 5, 2011
Officially official
After two and a half years of testing, we finally have an official read on Lauren's hearing after our Friday appointment with the audiologist. To date, we've consistently had indications that Lauren has a mild hearing loss but have never been able to reliably determine the cause. I don't think we ever had all three (or four depending on how we count) tests fully completed and often there were obstructions - wax, fluid, colds, child temperament...
This time finished them all. We knew Lauren's ears canals were clear. We knew her ear drums were responding and that there was no fluid build up. She's also at an age where her responses are pretty reliable. Really reliable actually so we were all thrilled. Lauren learns very quickly and within a few tries on each conditioned response we started, she had it completely figured out. Lynne plays a sound, Lauren does a task, Mama cheers.
All good.
And the results are in. Lauren does have a mild hearing loss - or as I prefer to call it, a hearing deficiency. How can you lose what you never had? In her right ear, she doesn't hear anything lower than 20db. In her left, it's 10- 20 db depending on the frequency. (db is the volume, frequency is the pitch. At higher pitch she can hear more reliably in both ears.)
We also did a test that involves passing the sound through her skull bones, bypassing the inner ear and going straight to the cochlea. This resulted in better results - Lauren could hear these sounds at less than 10db for most frequencies.
But what does it all mean?
The bone conduction results suggest that her cochlia - responsible for getting the signals to her brain - are working fine. The problem is therefore in her inner ear. Since it's not fluid (as we can see by the ear drum colour and tension) it must be the three bones of the inner ear. Given the presence of a genetic syndrome, it is within the realm of possibility that there is a mild deformation of those bones interfering with the proper transfer of audio information.
Without an MRI or other more invasive test, there's no way to know for sure. And really, it doesn't matter.
In a practical sense, it confirms what we've already seen - that Lauren has trouble hearing things in noisy environments - is going to continue. It means that when she goes to school, we need to ensure she sits close to the teacher and that Lynne's recommendation to implement an FM sound field system is carried out, at least for Lauren's primary school years. A sound field system is for the whole room, not a personal system that only benefits Lauren. It's something the school would have to implement and it would follow her to each classroom as she advances.
In a way, it's good to finally know what the status is and have it be without question. It's good too to know that hearing aids aren't an issue. The loss is not significant enough to warrant intervention on that level and would interfere with some of the sounds she already hears.
We can't know if Lauren's level of hearing loss will change. While it's not likely to get better, it could get worse and will need to be followed, at least until Lauren is old enough to compensate on her own. We're scheduled to see Lynne again in January with the intention of having a formal report to attach to Lauren's kindergarten registration.
All the agencies involved with Lauren submit paperwork to the school boards at the time of registration. I know the school boards aren't looking for it on MY paperwork, but they're going to get it anyways! It's the only way I know of to make sure things like an audio system are actually in place for the day Lauren starts.
For me, it ensures she'll be learning what she's supposed to be learning, not struggling to cope with the environment AND learning at the same time.
This time finished them all. We knew Lauren's ears canals were clear. We knew her ear drums were responding and that there was no fluid build up. She's also at an age where her responses are pretty reliable. Really reliable actually so we were all thrilled. Lauren learns very quickly and within a few tries on each conditioned response we started, she had it completely figured out. Lynne plays a sound, Lauren does a task, Mama cheers.
All good.
And the results are in. Lauren does have a mild hearing loss - or as I prefer to call it, a hearing deficiency. How can you lose what you never had? In her right ear, she doesn't hear anything lower than 20db. In her left, it's 10- 20 db depending on the frequency. (db is the volume, frequency is the pitch. At higher pitch she can hear more reliably in both ears.)
We also did a test that involves passing the sound through her skull bones, bypassing the inner ear and going straight to the cochlea. This resulted in better results - Lauren could hear these sounds at less than 10db for most frequencies.
But what does it all mean?
The bone conduction results suggest that her cochlia - responsible for getting the signals to her brain - are working fine. The problem is therefore in her inner ear. Since it's not fluid (as we can see by the ear drum colour and tension) it must be the three bones of the inner ear. Given the presence of a genetic syndrome, it is within the realm of possibility that there is a mild deformation of those bones interfering with the proper transfer of audio information.
Without an MRI or other more invasive test, there's no way to know for sure. And really, it doesn't matter.
In a practical sense, it confirms what we've already seen - that Lauren has trouble hearing things in noisy environments - is going to continue. It means that when she goes to school, we need to ensure she sits close to the teacher and that Lynne's recommendation to implement an FM sound field system is carried out, at least for Lauren's primary school years. A sound field system is for the whole room, not a personal system that only benefits Lauren. It's something the school would have to implement and it would follow her to each classroom as she advances.
In a way, it's good to finally know what the status is and have it be without question. It's good too to know that hearing aids aren't an issue. The loss is not significant enough to warrant intervention on that level and would interfere with some of the sounds she already hears.
We can't know if Lauren's level of hearing loss will change. While it's not likely to get better, it could get worse and will need to be followed, at least until Lauren is old enough to compensate on her own. We're scheduled to see Lynne again in January with the intention of having a formal report to attach to Lauren's kindergarten registration.
All the agencies involved with Lauren submit paperwork to the school boards at the time of registration. I know the school boards aren't looking for it on MY paperwork, but they're going to get it anyways! It's the only way I know of to make sure things like an audio system are actually in place for the day Lauren starts.
For me, it ensures she'll be learning what she's supposed to be learning, not struggling to cope with the environment AND learning at the same time.
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