It's official. The potatoes are done. The plants have all died back so tomorrow, if the weather holds, we'll dig them up. From what we've gotten so far, I don't expect a stellar yield. VERY disappointing. Makes me very glad we don't have to rely on what we've grown to make it through the winter.
The onions too have met a terrible demise. I wonder sometimes if we planted everything just a hair too early. The yellow onions all toppled over and started to rot from the ground surface upwards. The bulbs are fine but not very large. The red onions went to seed and the bulbs have ALL been dismal. More like the tiny ones you throw whole into soup than the large kind we love to grill.
The beans however are coming on strong and beautiful. We did two plantings in June and both are now coming in. Our first harvest last week was small but grilled beautifully. Now I have a large enough supply for a salad, more grilling, a frittata, you name it, we can make it.
The zucchini are still prolific so next to try is zucchini vinaigrette.
The grape tomatoes are finally starting to ripen and I've had one "big boy" who was not so big but tasty on toast. Not big enough to share so I snarfed it down when no one was looking.
The peas are definitely done but we did a late planting just to see if we could get a fall crop. Could be interesting. Of course it's going to depend on the the groundhog. If he keeps eating the tops off, we'll never get anywhere.
Given our empty spaces this year (mostly from having moved the potatoes and from limiting our attempts at tomatoes to the few plants in pots) we've done another planting of beets (the first three have been eaten but animals other than us) greens, spinach and beans. Having pulled up all the yellow onions already, I have room for another planting next week... or perhaps tomorrow - a couple square feet of cilantro would be good for salsa canning time. Plus I plan to harvest all the roots this year to freeze for thai curries.
This time we've fenced the growing grounds in an attempt to actually see the beets. I'm sure the fence is not entirely rabbit proof as they can certainly hop. And it may not be groundhog resistant as he's a pretty burly fellow and could likely plow it over it he tried. And I KNOW it's not deer proof as it's only 2 feet high BUT, at least we're giving it another go.
Notes for next year: more potatoes, potatoes, potatoes, more onions, (get them somewhere else next time), no shallots (failing twice is enough), no fennel (it bolts too easily to waste my limited garden space) and more carrots with a lighter fence.
This year's carrot fence is some dark shade screen left over from gensing farm owned by a family friend. It was free and I had it on hand. Thought it would work great - which it did for keeping out large rodents and hopping mammals. It also kept out the sun except at high noon. Since I'm not looking for a shoot-out, I best find a way to protect the seedlings without decreasing sunlight.
But on the really good side, the corn/squash/bean garden seems to be recovering from the elephant nap. The squash anyways is perking up significantly and I see a few more bean plants. The corn stalks are showing a few ears but it'll be hit and miss whether the toppled plants make any discernible recovery. If not, our favourite market has started harvesting their crop so we'll be making a weekly run.
If Roman had his way, we'd be there daily...
Saturday, July 31, 2010
Rain, Waves and Happy Kids
Camping at Port Burwell Provincial Park
Wave jumping.
Bike riding. The training wheels get raised a little bit each day...
Road building at the beach.
Puddle duck. Glad someone's having fun the fourth day it rains.
Looking so grown up.
Wave jumping.
Bike riding. The training wheels get raised a little bit each day...
Road building at the beach.
Puddle duck. Glad someone's having fun the fourth day it rains.
Looking so grown up.
Speeking of Speech...
The last of our three July appointments was a follow up with the speech therapist.
Previously, at speech therapy, Lauren said next to nothing. If you recall, we were part of a small group with three other children plus parents. I felt Lauren didn't really fit in and that the tight quarters and high volume made it hard for her to hear let alone participate.
Either way, Lauren started talking when she wanted to and has progressed to multi-line statements and John Madden like ramblings.
Catching up with Veronique was important. She presented Lauren with some puzzles and was able to get one word answers out of her. Each word had purpose - dog, cat, barn, pig, monkey, etc - showing Veronique the range of Lauren's vocabulary and her pronunciation tendencies.
For the most part, Lauren's consonant substitutions are consistent with a child her age - W for pretty much everything, dropping "s" off of blends, dropping a syllable, etc. She also highlighted some less standard issues - Lauren being inconsistent with her use of B, P, and M specifically. These sounds are made by putting your lips together and are called bi-labial sounds. Having trouble with these sounds and replacing them with something else (in Lauren's case, W or Y as in Yonkey instead of Monkey) is inconsistent with her age. It is common for children with a high palette and narrow jaw.
Any one reading this raising a child with Noonan Syndrome is probably nodding knowingly here.
Veronique also pointed out how Lauren had saliva pooling at the edges of her mouth which is also consistent with mouth structure issues also supporting the reason behind her B/P/M issues.
I was impressed. I don't think I've ever mentioned the potential for mouth shape to be an issue for Lauren as part of NS. I was reminded again why it is that I continue to take Lauren to Veronique and not another therapist.
If I haven't mentioned it before, I sometimes find myself uncomfortable with Veronique but quickly realized that it was her candor and professionalism that did it. She never hesitates to tell me what's going on, what I need to do differently and why it's important that I do what she tells me to. I didn't like to pushed and needed to be. So even though I know I could see someone else if I wanted to, I made the conscious decision to stick with Veronique even if it makes me squirm.
And, as I said, I'm reminded why.
She's really good.
Next steps are a) see what time brings. As Lauren grows, she may learn to compensate for herself. b) see the ENT and audiologist and keep trying to get a proper reading on Lauren's hearing. If she's not hearing everything clearly, it's going to be hard to self correct. c) ask the ENT if we should see a specialist about the shape of Lauren's mouth. I'm not sure what the long term implications of that would be but it's an option. d) read lots of books with B / P / M sounds.
Regardless of all the options, we really do simply have to wait and see what time brings. She's too young for intensive therapy of any kind. Mom therapy will have to do. I try to help her be aware of her B / P / Ms but not intensively.
Next on the list is the ENT, then the audiologist (convenient that these were already scheduled given b) above. ) then her 30 month followup with KidsAbility.
I'm looking forward to the 30 month appointment. I'm concerned a bit about her gross motor and muscle strength. There's been lots of chatter on the ListServ about kids with low muscle tone well into their teens and how tired they get. I want to nip that one in the bud if possible and build a strong capable child...
Previously, at speech therapy, Lauren said next to nothing. If you recall, we were part of a small group with three other children plus parents. I felt Lauren didn't really fit in and that the tight quarters and high volume made it hard for her to hear let alone participate.
Either way, Lauren started talking when she wanted to and has progressed to multi-line statements and John Madden like ramblings.
Catching up with Veronique was important. She presented Lauren with some puzzles and was able to get one word answers out of her. Each word had purpose - dog, cat, barn, pig, monkey, etc - showing Veronique the range of Lauren's vocabulary and her pronunciation tendencies.
For the most part, Lauren's consonant substitutions are consistent with a child her age - W for pretty much everything, dropping "s" off of blends, dropping a syllable, etc. She also highlighted some less standard issues - Lauren being inconsistent with her use of B, P, and M specifically. These sounds are made by putting your lips together and are called bi-labial sounds. Having trouble with these sounds and replacing them with something else (in Lauren's case, W or Y as in Yonkey instead of Monkey) is inconsistent with her age. It is common for children with a high palette and narrow jaw.
Any one reading this raising a child with Noonan Syndrome is probably nodding knowingly here.
Veronique also pointed out how Lauren had saliva pooling at the edges of her mouth which is also consistent with mouth structure issues also supporting the reason behind her B/P/M issues.
I was impressed. I don't think I've ever mentioned the potential for mouth shape to be an issue for Lauren as part of NS. I was reminded again why it is that I continue to take Lauren to Veronique and not another therapist.
If I haven't mentioned it before, I sometimes find myself uncomfortable with Veronique but quickly realized that it was her candor and professionalism that did it. She never hesitates to tell me what's going on, what I need to do differently and why it's important that I do what she tells me to. I didn't like to pushed and needed to be. So even though I know I could see someone else if I wanted to, I made the conscious decision to stick with Veronique even if it makes me squirm.
And, as I said, I'm reminded why.
She's really good.
Next steps are a) see what time brings. As Lauren grows, she may learn to compensate for herself. b) see the ENT and audiologist and keep trying to get a proper reading on Lauren's hearing. If she's not hearing everything clearly, it's going to be hard to self correct. c) ask the ENT if we should see a specialist about the shape of Lauren's mouth. I'm not sure what the long term implications of that would be but it's an option. d) read lots of books with B / P / M sounds.
Regardless of all the options, we really do simply have to wait and see what time brings. She's too young for intensive therapy of any kind. Mom therapy will have to do. I try to help her be aware of her B / P / Ms but not intensively.
Next on the list is the ENT, then the audiologist (convenient that these were already scheduled given b) above. ) then her 30 month followup with KidsAbility.
I'm looking forward to the 30 month appointment. I'm concerned a bit about her gross motor and muscle strength. There's been lots of chatter on the ListServ about kids with low muscle tone well into their teens and how tired they get. I want to nip that one in the bud if possible and build a strong capable child...
Tuesday, July 20, 2010
Wanting to be big
Lauren really wants to be just like her big brother.
One of Roman's jobs is to take his dishes to the counter when he's done his meal. This morning he took his cereal bowl just like he's expected to.
About 10 minutes later, after Lauren had finished her breakfast, Kevin had stepped away for the moment. Lauren climbed down from her chair and when Kevin came back to the table he found her stretching stretching streeeeetchhhing to put her cereal bowl up on the counter.
I turned to see her just as the bowl almost crested the counter edge but being an inch too short, the bowl tipped back and dumped all over her face.
She was so upset. I think more for not getting the bowl up and second for having spilled all over herself.
We tried to cheer her up and praised her for trying so hard.
She was so cute just trying to be a big girl.
One of Roman's jobs is to take his dishes to the counter when he's done his meal. This morning he took his cereal bowl just like he's expected to.
About 10 minutes later, after Lauren had finished her breakfast, Kevin had stepped away for the moment. Lauren climbed down from her chair and when Kevin came back to the table he found her stretching stretching streeeeetchhhing to put her cereal bowl up on the counter.
I turned to see her just as the bowl almost crested the counter edge but being an inch too short, the bowl tipped back and dumped all over her face.
She was so upset. I think more for not getting the bowl up and second for having spilled all over herself.
We tried to cheer her up and praised her for trying so hard.
She was so cute just trying to be a big girl.
Sunday, July 18, 2010
Garden update
Sigh. The weeds have officially taken over the greens section of the garden.
The sweet peas are pretty well done though I did a third planting anticipating (hoping for?) a cool summer. We'll see what happens with those.
The zucchini is rocking along. Who knew four zucchini was way too many for this family!
Meanwhile, those two random squash I mentioned? Well, they're not squash. I should've known by how aggressively they've grown and spread and taken over absolutely everything they can climb on. I finally clued in when the pole beans blossomed. I finally paid attention to why my subconscious was telling me and actually LOOKED at the plants. There are tiny blossoms every where. Neither squash nor beans have prolific tiny white flowers.
Uh oh.
One random "squash" was easy to contain and uproot. The other was in with the corn, squash, pumpkins and beans. Nightmare. Here I was thinking the garden plan of squash with corn and beans together was the mistake when REALLY the mistake was not pulling that "squash" plant in the first place.
All I could think was how much longer it would be growing and therefore how much bigger the fruits would be.
HA! All I got out of it was a corn-squash-pumpkin-bean patch that looks like an elephant slept in it. If only I'd taken before and after pictures. I think I'm too embarrassed to share them though.
The weeds is all out but it'll be hit and miss whether the plants in that part of the garden will recover.
That, combined with the onions, shallots and potatoes that are failing or non existent have made me really wish we could start this entire season over again.
So.. lessons learned:
1) Don't buy my potato and onion sets at TSC - my grocery store produce potatoes last year were more productive.
and
2) If we didn't plant it there, it has to go!
Hopefully the corn will recover enough for a couple ears though. Roman is still really excited about it...
The sweet peas are pretty well done though I did a third planting anticipating (hoping for?) a cool summer. We'll see what happens with those.
The zucchini is rocking along. Who knew four zucchini was way too many for this family!
Meanwhile, those two random squash I mentioned? Well, they're not squash. I should've known by how aggressively they've grown and spread and taken over absolutely everything they can climb on. I finally clued in when the pole beans blossomed. I finally paid attention to why my subconscious was telling me and actually LOOKED at the plants. There are tiny blossoms every where. Neither squash nor beans have prolific tiny white flowers.
Uh oh.
One random "squash" was easy to contain and uproot. The other was in with the corn, squash, pumpkins and beans. Nightmare. Here I was thinking the garden plan of squash with corn and beans together was the mistake when REALLY the mistake was not pulling that "squash" plant in the first place.
All I could think was how much longer it would be growing and therefore how much bigger the fruits would be.
HA! All I got out of it was a corn-squash-pumpkin-bean patch that looks like an elephant slept in it. If only I'd taken before and after pictures. I think I'm too embarrassed to share them though.
The weeds is all out but it'll be hit and miss whether the plants in that part of the garden will recover.
That, combined with the onions, shallots and potatoes that are failing or non existent have made me really wish we could start this entire season over again.
So.. lessons learned:
1) Don't buy my potato and onion sets at TSC - my grocery store produce potatoes last year were more productive.
and
2) If we didn't plant it there, it has to go!
Hopefully the corn will recover enough for a couple ears though. Roman is still really excited about it...
Photo diary
Remember how I said we ran out of things to do while waiting for the GI guy so I taught Lauren how to use my digital camera?
Here's some of her work. Most of it included blurred too close shots of the chairs, floor, my legs or feet and a few random shots of the ceiling, etc. These are some of the keepers. I especially like this one of her feet...
Here's some of her work. Most of it included blurred too close shots of the chairs, floor, my legs or feet and a few random shots of the ceiling, etc. These are some of the keepers. I especially like this one of her feet...
Thursday, July 15, 2010
GI Guy
It was trip number 2 to Mac this week. I'm not sure if it's the summer season or cut backs but the parking attendants have been non existent and today I really could've used one. We would've been right on time had we been able to park three deep and leave our keys. Instead we ended up deeper into the bowels of the parking garage. Does anyone else catch the irony there?
There's no sense being anxious about tardiness with the GI guy though. Seriously people. If I'm scheduled for a 1:15 appointment don't you think it would be nice to at least be seen within the clock hour? It was after 2 before we were even in to chat with the latest resident.
From experience I knew to pack a bag of toys to keep Little Miss entertained but even that was insufficient.
Lauren now knows how to use my digital camera.
We were well on our way to 3pm when we finally met with the Dr. He seemed genuinely excited that we've worked out Lauren's gas issues and truly interested to know what we were doing to make it work.
"Dairy free, limited fructose and PEG every day"
We discussed the long term implications. As a parent, I want my child off these medications but at the same time I want to know that she's thriving and not in pain.
With respect to the PEG / Lax-a-day / mild laxative, there aren't any dependence issues and we had a light conversation about his recent realization. He commented, with a hint of disdain, about this parental concern about dependence but then realized that a) the bottle says not to use it for more than 5 days and b) the pharmacists say not to use it for more than 5 days so what else are we supposed to think?
The reality is that until Lauren's muscle strength builds naturally, which will happen with growth and time, she's going to need something to help push things along in her small intestines to eliminate the fermentation time. We can manage as much as possible with her diet but until her body can move things along on its own, it's going to need help. Dr. I's estimated time frame is 1 to 2 years more but that the PEG is really mild and generally inert. In our case, the benefits - no gas pains, better sleep, happier girl - far outweigh my parental heebee geebees about continued medicating.
Same for her reflux meds. He expects she need them for at least another year while her muscles grow and strengthen and learn the coordination needed to keep the stomach fluids where they belong. These meds do carry some weight of dependence but the transition off can be managed. He's caution was that with adults, they generally need something to cover the 'as needed episodes' so we would likely need the same for Lauren. It takes a few days for the body to react to the absence of meds and 2 to 3 weeks for the stomach acid levels to return to 'normal'. In this regard, we've decided to keep her on the Nexium (prevacid) for the foreseeable future as she can't really tell us if she's having reflux. We'll make her "coffee" each morning and not worry if she skips a dose here and there. When she's old enough to tell us the source of her pain, we can move her off the daily meds and maintain an as needed supply of Ranitidine.
For the PEG, when it comes time to ween her, we gradually reduce her daily dose. Skipping days is a recipe for disaster according to the doctor but as it's a couple years away, we'll keep on it and with heads in the sand, carry on a while.
It has been refreshing to get a bit more consistent sleep so for now, no meddling. Just sleeping and enjoying.
An interesting bit about fructose, he commented - as much to the new resident as to me - that our bodies aren't designed to handle juice. We're meant to consume the fruit which takes longer to digest and releases the sugars more slowly. Consuming quantities of juice requires the body to digest it all much more quickly and, in our case, results in Lauren's system being literally and figuratively flooded with a sugar it can't handle. This is why she can have a few grapes or some raisins but not a juice box or whole apple.
Overall, as much as it was once again a looong appointment with little gain, it is encouraging to know Lauren is doing well, that we're stable for a while and don't have to go through this type of appointment again until next summer.
So here's to us figuring out Lauren's digestive issue and persevering.
Now let's celebrate and get ready for the next thing...
PS: Hang in there Sam! We're thinking of you. Hugs to you and the whole family. Love from your new friends in Ontario...
There's no sense being anxious about tardiness with the GI guy though. Seriously people. If I'm scheduled for a 1:15 appointment don't you think it would be nice to at least be seen within the clock hour? It was after 2 before we were even in to chat with the latest resident.
From experience I knew to pack a bag of toys to keep Little Miss entertained but even that was insufficient.
Lauren now knows how to use my digital camera.
We were well on our way to 3pm when we finally met with the Dr. He seemed genuinely excited that we've worked out Lauren's gas issues and truly interested to know what we were doing to make it work.
"Dairy free, limited fructose and PEG every day"
We discussed the long term implications. As a parent, I want my child off these medications but at the same time I want to know that she's thriving and not in pain.
With respect to the PEG / Lax-a-day / mild laxative, there aren't any dependence issues and we had a light conversation about his recent realization. He commented, with a hint of disdain, about this parental concern about dependence but then realized that a) the bottle says not to use it for more than 5 days and b) the pharmacists say not to use it for more than 5 days so what else are we supposed to think?
The reality is that until Lauren's muscle strength builds naturally, which will happen with growth and time, she's going to need something to help push things along in her small intestines to eliminate the fermentation time. We can manage as much as possible with her diet but until her body can move things along on its own, it's going to need help. Dr. I's estimated time frame is 1 to 2 years more but that the PEG is really mild and generally inert. In our case, the benefits - no gas pains, better sleep, happier girl - far outweigh my parental heebee geebees about continued medicating.
Same for her reflux meds. He expects she need them for at least another year while her muscles grow and strengthen and learn the coordination needed to keep the stomach fluids where they belong. These meds do carry some weight of dependence but the transition off can be managed. He's caution was that with adults, they generally need something to cover the 'as needed episodes' so we would likely need the same for Lauren. It takes a few days for the body to react to the absence of meds and 2 to 3 weeks for the stomach acid levels to return to 'normal'. In this regard, we've decided to keep her on the Nexium (prevacid) for the foreseeable future as she can't really tell us if she's having reflux. We'll make her "coffee" each morning and not worry if she skips a dose here and there. When she's old enough to tell us the source of her pain, we can move her off the daily meds and maintain an as needed supply of Ranitidine.
For the PEG, when it comes time to ween her, we gradually reduce her daily dose. Skipping days is a recipe for disaster according to the doctor but as it's a couple years away, we'll keep on it and with heads in the sand, carry on a while.
It has been refreshing to get a bit more consistent sleep so for now, no meddling. Just sleeping and enjoying.
An interesting bit about fructose, he commented - as much to the new resident as to me - that our bodies aren't designed to handle juice. We're meant to consume the fruit which takes longer to digest and releases the sugars more slowly. Consuming quantities of juice requires the body to digest it all much more quickly and, in our case, results in Lauren's system being literally and figuratively flooded with a sugar it can't handle. This is why she can have a few grapes or some raisins but not a juice box or whole apple.
Overall, as much as it was once again a looong appointment with little gain, it is encouraging to know Lauren is doing well, that we're stable for a while and don't have to go through this type of appointment again until next summer.
So here's to us figuring out Lauren's digestive issue and persevering.
Now let's celebrate and get ready for the next thing...
PS: Hang in there Sam! We're thinking of you. Hugs to you and the whole family. Love from your new friends in Ontario...
Monday, July 12, 2010
Strike Two
Don't you just love going to a party when all the guests show up except the person of honor? Once again, Lauren`s veins were a no show for growth hormone testing.
We left home by 6:30 knowing the sooner we arrive at Mac, the better chance we have of getting an IV nurse in before noon. After a brief pause at the Starbuck's drive thru, we had a smooth, beautiful drive. Even the parking garage at Mac was relatively empty.
The medical nursery was empty except for two nurses and the office coordinator - two of which remembered Lauren from last time. I guess my little one with disappearing veins not crying when being poked and prodded is memorable?
This time around, the nurse was actually able to find a vein in Lauren's left arm. But only long enough to get two tiny vials. Everyone apologized profusely for having lost the access and promptly called the IV nurse for the next go around.
When the IV nurse, and an assistant, arrived after only a short wait, I thought it was in the bag.
Not so much.
Two tries and a lot of shrugging later, everything was put on hold yet again. Lauren, the whole time, was a trouper. She did some mighty howling but it was not usually the needle causing the issue but the restraint. Because her veins like to hide deep in her chubby little arms, they were holding her arm (and later, leg) extra tight and extra stretched to try and make things easier to find. This caused quite an uproar. As much as Lauren loves to snuggle, being restrained is not something any of us like to endure.
At this time, the medical nursery nurse clarified to the IV nurse that we needed a line in so they could draw blood every 30 minutes over 4 hours. The look on the IV nurse's face was enough even if I hadn't been able to hear the conversation. There was no way that was going to happen with my little pin cushion regardless of how good any of the staff members are.
It made me wonder. What if it was an emergency situation? Would they give up? Or is it different because we're wanting to draw blood rather than be able to put fluids in?
In the end it doesn't matter. By 9am we were back on the road heading home. Possibly one of the shortest trips we've EVER had to McMaster. Completely useless trip but definitely the shortest.
I should clarify. It wasn't completely useless. It has solidified for Kevin and I that growth hormone testing and the potential of treatment is very far from a priority for us. We won't be rescheduling the test any time soon if ever. Unless the endocrinologist suggests there is a significant need for Lauren to have GHT, we're going to leave things as they are. I'm not willing to risk her heart for the sake of height. I'm sure no matter what we chose for her it will, at some point in the teenage years, be the be wrong decision but it's the one we're making today.
I actually find myself questioning a lot of the appointments we have scheduled. We're to see the GI specialist on Thursday. Given our 'rocky' relationship, I hate the waste of time it becomes to see him. Unfortunately Lauren is on two different medications, both related to her digestive system so we need this guy to help us get through the next while and work through transitioning her off the meds - if possible.
But all the little things - the milestone tracking tests for example - make me cringe. It's not that she can't do things, or that I'm concerned about the speed at which she acquires new skills. Not at all. It's the underlying judgment that comes along with it. As if, when she doesn't make a milestone, it's a reflection of my parenting abilities. When she does make a milestone it's how brilliant she is.
But if she didn't have a label, no one would question any of it.
If she didn't have Noonan Syndrome, all these things we deal with would just be childhood issues and unique to her personality
And she's not really behind on anything, not missing anything and generally a happy girl.
So why put her or us through all this over and over?
We'll see how things go Thursday regarding Lauren's long term intestinal care but it might be time for us to put all the extra curricular appointments on hold and just enjoy our girl for a while.
We left home by 6:30 knowing the sooner we arrive at Mac, the better chance we have of getting an IV nurse in before noon. After a brief pause at the Starbuck's drive thru, we had a smooth, beautiful drive. Even the parking garage at Mac was relatively empty.
The medical nursery was empty except for two nurses and the office coordinator - two of which remembered Lauren from last time. I guess my little one with disappearing veins not crying when being poked and prodded is memorable?
This time around, the nurse was actually able to find a vein in Lauren's left arm. But only long enough to get two tiny vials. Everyone apologized profusely for having lost the access and promptly called the IV nurse for the next go around.
When the IV nurse, and an assistant, arrived after only a short wait, I thought it was in the bag.
Not so much.
Two tries and a lot of shrugging later, everything was put on hold yet again. Lauren, the whole time, was a trouper. She did some mighty howling but it was not usually the needle causing the issue but the restraint. Because her veins like to hide deep in her chubby little arms, they were holding her arm (and later, leg) extra tight and extra stretched to try and make things easier to find. This caused quite an uproar. As much as Lauren loves to snuggle, being restrained is not something any of us like to endure.
At this time, the medical nursery nurse clarified to the IV nurse that we needed a line in so they could draw blood every 30 minutes over 4 hours. The look on the IV nurse's face was enough even if I hadn't been able to hear the conversation. There was no way that was going to happen with my little pin cushion regardless of how good any of the staff members are.
It made me wonder. What if it was an emergency situation? Would they give up? Or is it different because we're wanting to draw blood rather than be able to put fluids in?
In the end it doesn't matter. By 9am we were back on the road heading home. Possibly one of the shortest trips we've EVER had to McMaster. Completely useless trip but definitely the shortest.
I should clarify. It wasn't completely useless. It has solidified for Kevin and I that growth hormone testing and the potential of treatment is very far from a priority for us. We won't be rescheduling the test any time soon if ever. Unless the endocrinologist suggests there is a significant need for Lauren to have GHT, we're going to leave things as they are. I'm not willing to risk her heart for the sake of height. I'm sure no matter what we chose for her it will, at some point in the teenage years, be the be wrong decision but it's the one we're making today.
I actually find myself questioning a lot of the appointments we have scheduled. We're to see the GI specialist on Thursday. Given our 'rocky' relationship, I hate the waste of time it becomes to see him. Unfortunately Lauren is on two different medications, both related to her digestive system so we need this guy to help us get through the next while and work through transitioning her off the meds - if possible.
But all the little things - the milestone tracking tests for example - make me cringe. It's not that she can't do things, or that I'm concerned about the speed at which she acquires new skills. Not at all. It's the underlying judgment that comes along with it. As if, when she doesn't make a milestone, it's a reflection of my parenting abilities. When she does make a milestone it's how brilliant she is.
But if she didn't have a label, no one would question any of it.
If she didn't have Noonan Syndrome, all these things we deal with would just be childhood issues and unique to her personality
And she's not really behind on anything, not missing anything and generally a happy girl.
So why put her or us through all this over and over?
We'll see how things go Thursday regarding Lauren's long term intestinal care but it might be time for us to put all the extra curricular appointments on hold and just enjoy our girl for a while.
Sunday, July 11, 2010
Wee Wee Wii!!
"You're doin' great! Papa! You're doin' great! Keep it up!
Stay on the board! Stay on the boooarrrd!
Woah. That was hard!"
I'm upstairs and this is what I hear from the basement. It's stinky hot out so the kids are downstairs watching Papa play games on the Wii (picked it up used for a sweet sweet deal!). Technically Papa is trying to find games the kids can play but Monkey Ball Blaster is still a bit beyond their abilities.
But they love cheering him on!
"I just love to watch" Roman just said.
Occasionally I hear, "Stay board! stay board! Woaah!" from Lauren too.
Even if this was it, it was totally worth it.
Stay on the board! Stay on the boooarrrd!
Woah. That was hard!"
I'm upstairs and this is what I hear from the basement. It's stinky hot out so the kids are downstairs watching Papa play games on the Wii (picked it up used for a sweet sweet deal!). Technically Papa is trying to find games the kids can play but Monkey Ball Blaster is still a bit beyond their abilities.
But they love cheering him on!
"I just love to watch" Roman just said.
Occasionally I hear, "Stay board! stay board! Woaah!" from Lauren too.
Even if this was it, it was totally worth it.
Yard sales, gym memberships and hunting trips
I realized yesterday just how easy it is to let things slide. If I don't blog about life when it happens, it simply carries on and the next thing comes and goes.
Shortly after the last post, we had a yard sale. A very soggy, moderately disastrous yard sale. It started with the local paper, where we ran an ad, putting our map location on the opposite end of town. We watched the weather all week finally taking the plunge Saturday morning, setting everything up only to have it drizzle then pour. To their credit, some people did stop and peer under the tarps and some did make purchases but not nearly the clearance I was hoping for.
Perhaps later in the summer we'll do something spur of the moment.
Since then we've started a new session at The Little Gym. Lauren LOVES it. I find I'm enjoying it too. We've had two classes so far and they've had a parachute both times. Yesterday, at home, we set up our new patio shelter including a wrap-around wind screen. Its texture is similar to the parachute so, next thing you know, Lauren's grabbed hold and ready to shake it.
We've also given Roman a digital camera of his own. For the next four days he carried it everywhere taking some very artistic pictures of "nothing". Since he doesn't seem to have an interest in anything other than the computer and cars, we thought we'd do whatever we can to encourage other pursuits. We'll see if interest picks back up again when we go on a trip.
Last week Roman went to summer camp in the mornings. He loved going which was encouraging. They spent one morning at a splash pad which was another new experience and it also received rave reviews. The next day he came home with some other child's transformers in his backpack. Turns out Aidan had given them to him for a week neither of them realizing they only had one more morning together. This was a huge deal! Here, my cautious, reserved guy had made a friend in only a few days. Hooray!
Lauren's been doing well overall. She's in a proper bed now instead of a mattress on the floor and has moved from a double to a twin. So far so good on not falling out in the night. She's also be waking a lot less and settling better - so long as Papa tucks her back in not Mama. The price we pay is a wake up time paralleling that of the sun. We're trying to shift the bedtime schedule for both kids to be a bit later. It means giving up part of our evenings but I'm getting used to the idea just to be able to stay in bed until 7am.
Can't explain why but somehow getting up before 7am just seems uncivilized.
Which means tomorrow is destined to be uncivilized.
Lauren is scheduled for growth hormone stimulus testing again meaning an early start and an empty stomach. Technically the appointment starts at 8am but I've convinced the administrator that an earlier start would be better since she won't have eaten anything since about 5:30 the night before. Thankfully for me, the Starbucks drive through is open at 5:30am and is "on the way".
Fingers crossed this trip will be more successful than the last!
Shortly after the last post, we had a yard sale. A very soggy, moderately disastrous yard sale. It started with the local paper, where we ran an ad, putting our map location on the opposite end of town. We watched the weather all week finally taking the plunge Saturday morning, setting everything up only to have it drizzle then pour. To their credit, some people did stop and peer under the tarps and some did make purchases but not nearly the clearance I was hoping for.
Perhaps later in the summer we'll do something spur of the moment.
Since then we've started a new session at The Little Gym. Lauren LOVES it. I find I'm enjoying it too. We've had two classes so far and they've had a parachute both times. Yesterday, at home, we set up our new patio shelter including a wrap-around wind screen. Its texture is similar to the parachute so, next thing you know, Lauren's grabbed hold and ready to shake it.
We've also given Roman a digital camera of his own. For the next four days he carried it everywhere taking some very artistic pictures of "nothing". Since he doesn't seem to have an interest in anything other than the computer and cars, we thought we'd do whatever we can to encourage other pursuits. We'll see if interest picks back up again when we go on a trip.
Last week Roman went to summer camp in the mornings. He loved going which was encouraging. They spent one morning at a splash pad which was another new experience and it also received rave reviews. The next day he came home with some other child's transformers in his backpack. Turns out Aidan had given them to him for a week neither of them realizing they only had one more morning together. This was a huge deal! Here, my cautious, reserved guy had made a friend in only a few days. Hooray!
Lauren's been doing well overall. She's in a proper bed now instead of a mattress on the floor and has moved from a double to a twin. So far so good on not falling out in the night. She's also be waking a lot less and settling better - so long as Papa tucks her back in not Mama. The price we pay is a wake up time paralleling that of the sun. We're trying to shift the bedtime schedule for both kids to be a bit later. It means giving up part of our evenings but I'm getting used to the idea just to be able to stay in bed until 7am.
Can't explain why but somehow getting up before 7am just seems uncivilized.
Which means tomorrow is destined to be uncivilized.
Lauren is scheduled for growth hormone stimulus testing again meaning an early start and an empty stomach. Technically the appointment starts at 8am but I've convinced the administrator that an earlier start would be better since she won't have eaten anything since about 5:30 the night before. Thankfully for me, the Starbucks drive through is open at 5:30am and is "on the way".
Fingers crossed this trip will be more successful than the last!
Friday, July 2, 2010
Growing up
Some days I look forward to my kids getting a bit bigger but not today. Usually it's so they can be a bit more independent, be able to play for half an hour without being abruptly velcroed to my leg for one reason or another. But not today.
Today, I'm pretty sure Roman is having his first migraine headache.
The day started out great. He woke up cheerful, there was very little obnoxious behaviour towards Lauren, he played, had a good breakfast and settled in for his chunk of computer time while I did some business banking.
It all started just after he deposited his third chip. He has three 20 minute chips to be used whenever he wishes throughout the day - within reason of course - knowing that when the third one is done, that's it for today and he'll have to wait til tomorrow for more. It's working really well for us. There's no fighting about getting off the computer or ending early. There's no negotiating when he can start. He asks, and if it's an okay time (such as not when we're about to go out the door or sit down for a meal) he can play. Simple.
Today he put his third chip in the cup and let out a huge yawn. I suggested perhaps he save the last for later but he insisted now was the time.
About 10 minutes later, he's off the computer, sitting having some juice. A few minutes after that he's in my arms shivering so off we go to bed. My statement of "if you're that cold you should snuggle in some blankets. Do you want to snuggle on the couch or in your bed?" was met with a quiet "in bed" and off we went. I tucked him in, and asked if anything hurt. "My tummy." "Where does it hurt?" "All over!" with a contorted tear filled face.
15 minutes later he was deep asleep.
That was 10 am this morning. It's now 3:20 and he's been up once to pee, had a couple scoops of cereal, two tylenol, a bit of juice and has been pretty sound asleep ever since.
There's no headache - he says his head is great but everything else is screaming migraine to me.
Fingers crossed it passes soon. We'll have to keep an eye on the frequency. Maybe this will be it but somehow, from personal experience, I doubt it.
Poor guy. He looks so sad and little tucked into his bed all day long.
Today, I'm pretty sure Roman is having his first migraine headache.
The day started out great. He woke up cheerful, there was very little obnoxious behaviour towards Lauren, he played, had a good breakfast and settled in for his chunk of computer time while I did some business banking.
It all started just after he deposited his third chip. He has three 20 minute chips to be used whenever he wishes throughout the day - within reason of course - knowing that when the third one is done, that's it for today and he'll have to wait til tomorrow for more. It's working really well for us. There's no fighting about getting off the computer or ending early. There's no negotiating when he can start. He asks, and if it's an okay time (such as not when we're about to go out the door or sit down for a meal) he can play. Simple.
Today he put his third chip in the cup and let out a huge yawn. I suggested perhaps he save the last for later but he insisted now was the time.
About 10 minutes later, he's off the computer, sitting having some juice. A few minutes after that he's in my arms shivering so off we go to bed. My statement of "if you're that cold you should snuggle in some blankets. Do you want to snuggle on the couch or in your bed?" was met with a quiet "in bed" and off we went. I tucked him in, and asked if anything hurt. "My tummy." "Where does it hurt?" "All over!" with a contorted tear filled face.
15 minutes later he was deep asleep.
That was 10 am this morning. It's now 3:20 and he's been up once to pee, had a couple scoops of cereal, two tylenol, a bit of juice and has been pretty sound asleep ever since.
There's no headache - he says his head is great but everything else is screaming migraine to me.
Fingers crossed it passes soon. We'll have to keep an eye on the frequency. Maybe this will be it but somehow, from personal experience, I doubt it.
Poor guy. He looks so sad and little tucked into his bed all day long.
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