Last Wednesday we welcomed Liz the Dietitian into our home. Somehow when we were initially referred to CCAC, we ended up on a waiting list.
I know. Liz was very apologetic and a bit confused as to how it happened but, as Lauren is "well rounded", we weren't too concerned with the why, just happy to be moving forward.
We reviewed Lauren's average daily diet which is pretty consistent for a week or two at a time. Right now she eats Special K for breakfast, something leftover (usually noodles of some sort) for second breakfast, fish/leftovers/bagel/cheese for 11sies, yogurt for snack, and whatever we're having for dinner chopped to smithereens.
Overall, Liz's concerns centered around whether she was getting enough dairy and protein. She'd love to see Lauren have more fruits and veggies but completely understands our hesitations given the gas pain issues. We have been giving Lauren more fruits since they're in season - raspberries and blueberries are a favourite with strawberries as an occasional snack. For whatever reason, these don't seem (knock on wood) to cause the problems we would expect. Nuclear purple poo but limited gas issues. ??
Under normal circumstances, Liz would close our file as satisfactory. Lauren is following the Noonan Syndrome height to weight ratio pretty consistently around 75%. For this, we are content. We do, however, have a GI consultation in the works. Liz would like to keep us on her case load until we see the specialist. If it turns out that Lauren has some dietary restrictions or larger issues to be dealt with, we're then already in the system and Liz can jump right in.
For this, we are also content.
Thursday, July 30, 2009
GI Go!
Last Monday I finally plucked up the courage and found the right words to request a consultation with a GI specialist for Lauren.
She'd been having a lot of rough evenings lately and we decided to retry antacids to see if reflux was responsible. Lauren would wake up an hour or so after falling asleep, howl, drink a lot of water then drop back into sleep for a while (usually). Sometimes this routine would repeat frequently over a few hours. I recalled my heartburn episodes during pregnancy and thought perhaps she was in the same boat. Sometimes a drink would work, sometimes it wouldn't.
Off we go to the pediatrician for a new prescription. While we were there, I asked for a height and weight check since we'd be seeing the dietitian on Wednesday - best to have all the info available on hand!
We finished her height and while the doctor was issuing the paperwork, I plucked up the courage and said, "We're still struggling with her gas issues. I wondered if you could get us in to talk to your GI guy. There's probably something I don't know I need to tell you that might help figure this out..."
And he said he would. He even confirmed on his way out of the exam room that he would make the referral for us.
Phew. Hooray for courage. And I didn't even wear my power shoes.
She'd been having a lot of rough evenings lately and we decided to retry antacids to see if reflux was responsible. Lauren would wake up an hour or so after falling asleep, howl, drink a lot of water then drop back into sleep for a while (usually). Sometimes this routine would repeat frequently over a few hours. I recalled my heartburn episodes during pregnancy and thought perhaps she was in the same boat. Sometimes a drink would work, sometimes it wouldn't.
Off we go to the pediatrician for a new prescription. While we were there, I asked for a height and weight check since we'd be seeing the dietitian on Wednesday - best to have all the info available on hand!
We finished her height and while the doctor was issuing the paperwork, I plucked up the courage and said, "We're still struggling with her gas issues. I wondered if you could get us in to talk to your GI guy. There's probably something I don't know I need to tell you that might help figure this out..."
And he said he would. He even confirmed on his way out of the exam room that he would make the referral for us.
Phew. Hooray for courage. And I didn't even wear my power shoes.
Thursday, July 16, 2009
Tid bits [note: not TiM bits...]
Tonight is an opportunity to catch up on a few random threads.
First, we had an appointment with OT and PT today. Both ladies had no concerns about Lauren's development right now. We definitely have things to work on but I guess in the big picture, she's doing well. As I think about it while writing, I find their choice of words interesting - they "have no real concerns". Not, "happy with what they're seeing" or "thrilled by her progress" but "have no concerns". Regardless, we have another appointment next month with the entire team from KidsAbility including the developmental pediatrician. If we don't have any success seeing a GI specialist before then, I'll discuss it with the DP. Her specialty gives her more indepth knowledge about Noonan Syndrome so perhaps she'll have a better insight into what we're experiencing.
Seems fate is also intervening in this relationship. Roman will be going to school on Mondays, Wednesdays and random Fridays. Originally, friend's child was expected to be M/W also. Turns out she never specified this to their school, which is different from ours anyways, so son will be going Tuesday-Thursday, PLUS she's signed him up at the preschool for M/W afternoons.
Even if I was looking to rebuild or continue the relationship, the very nature of our life paths is changing dramatically.
'tis all good.
First, we had an appointment with OT and PT today. Both ladies had no concerns about Lauren's development right now. We definitely have things to work on but I guess in the big picture, she's doing well. As I think about it while writing, I find their choice of words interesting - they "have no real concerns". Not, "happy with what they're seeing" or "thrilled by her progress" but "have no concerns". Regardless, we have another appointment next month with the entire team from KidsAbility including the developmental pediatrician. If we don't have any success seeing a GI specialist before then, I'll discuss it with the DP. Her specialty gives her more indepth knowledge about Noonan Syndrome so perhaps she'll have a better insight into what we're experiencing.
– — –
Linguistically, Lauren has a new phrase, "Uh oh!" This goes well with "All done", "All gone", ketchup, down, truck, HEY! (when you do something she doesn't like) and the constant favourite, "dog-gie!". As well, ask what a kittie says and you get a drawn out whiny meow indistinguishable from the real cats in our house. Ask what a dog says and she pants, complete with tongue hanging out.– — –
Roman is getting better at sharing, not pushing her over and generally being an okay big brother. The threat of the timeout chair seems to be working. At least for now. Lauren yelling "HEY!" whenever he gets within a foot of her certainly is a strong deterent as well. A "Hey" from Lauren generally draws a "hey!" or a stern "What's going on..." from a parental type.– — –
Friendwise, ( see the Evolution of Friendship ) summertime has lead to a natural limiting of contact. We see both mom and child at a gym programme once a week and the boys love it. I talk with mom and we've chatted a few times on the phone. No effort has been made to get together. She mentioned on the phone a week or so ago about how we haven't been in touch. My response centered around how our circles have been different lately. In a later conversation she asked how things were with the kids. I truthfully answered that they had improved since preschool had ended for the summer. Now that Roman's contact with the kids that set him off is reduced, the carryover into our family has reduced significantly. "You mean like my kid" she joked. "Well, yeah. Like your kid." I reponded lightly. This garnered a week without talking and no push for visits, to the extent that this week, at the gym, when child asked to have Roman over, she told her boy that they had other things to do. Usually I had to come up with an excuse (thank you nap time!)Seems fate is also intervening in this relationship. Roman will be going to school on Mondays, Wednesdays and random Fridays. Originally, friend's child was expected to be M/W also. Turns out she never specified this to their school, which is different from ours anyways, so son will be going Tuesday-Thursday, PLUS she's signed him up at the preschool for M/W afternoons.
Even if I was looking to rebuild or continue the relationship, the very nature of our life paths is changing dramatically.
– — –
Lifewise, things are going well. The children are getting older, Roman is growing taller, Lauren is getting more vocal.'tis all good.
Progress... finally some progress!
We are very excited to report that the last big rain we had influenced a great deal of growth in our garden.
Yesterday we discovered tomatoes starting - one on our 'surprise me' plant and one on the plum. The green onions are almost ready for their first harvest and we've finally had a few snap peas. Unfortunately they were overcooked at dinner time but at least there are more on the way!
For reference, the 'surprise me' plant mentioned above is one my mother picked out for me. I wasn't going to make it to our preferred greenhouse for plants so Mom was wonderful and took my list, and my sister out to get what I needed. Included in the list were plum tomatoes, globe tomatoes, heirloom tomatoes and one "Surprise Me" which she could have her pick. I had her take out the tag and but to let me know if it would need to be staked. Hooray for the mystery plant coming to fruit first!
Meanwhile, there are also tomatilloes coming on in droves. Phew! I despaired while the plants remained so small. No need now.
In Roman's words, "Hey! We can eat them soon!!" Hope he's not too disappointed that soon is probably three or four weeks away at the earliest.
I'm not sure what happened with the carrots though. Hardly any have come up in either the second or third planting. Sigh. We are simply going to have to savour the few we have.
Notes for next year: more tomato plants. They look like too many on paper but when it comes to canning time I'm going to wish it was the only thing we planted in the garden!
Yesterday we discovered tomatoes starting - one on our 'surprise me' plant and one on the plum. The green onions are almost ready for their first harvest and we've finally had a few snap peas. Unfortunately they were overcooked at dinner time but at least there are more on the way!
For reference, the 'surprise me' plant mentioned above is one my mother picked out for me. I wasn't going to make it to our preferred greenhouse for plants so Mom was wonderful and took my list, and my sister out to get what I needed. Included in the list were plum tomatoes, globe tomatoes, heirloom tomatoes and one "Surprise Me" which she could have her pick. I had her take out the tag and but to let me know if it would need to be staked. Hooray for the mystery plant coming to fruit first!
Meanwhile, there are also tomatilloes coming on in droves. Phew! I despaired while the plants remained so small. No need now.
In Roman's words, "Hey! We can eat them soon!!" Hope he's not too disappointed that soon is probably three or four weeks away at the earliest.
I'm not sure what happened with the carrots though. Hardly any have come up in either the second or third planting. Sigh. We are simply going to have to savour the few we have.
Notes for next year: more tomato plants. They look like too many on paper but when it comes to canning time I'm going to wish it was the only thing we planted in the garden!
Thursday, July 9, 2009
Show me the money
In May we applied for the Disability Tax Credit Certificate for Lauren. It came up in discussion during a small group meeting at KidsAbility. All the other moms have children with Down Syndrome and based on that alone were approved for the tax credit.
We struggled with the decision to apply from a moral stand point - the sense of abusing the system. There's a family history that taints it for my generation. Wise words from others suggested this is not in the same category as our previous experience since we've been paying taxes in the first place and our time and money is taken up with so many things in caring for Lauren.
Turns out our moral dilemma was irrelevant as we were denied the credit. The government's reasoning is sound enough. Essentially they've stated the delays and complications our pediatrician outlined in the form could be due to her syndrome or they could be a factor of her age.
This is true. We can't say anything for certain.
On one hand, we are very thankful that she's not currently experiencing some of the severe complications that can come with Noonan Syndrome. On the other, we're disappointed because the money was going to be invested to pay for growth hormone therapy in the not too distant future.
We can and will reapply in the future, annually even, especially if things change for Lauren but for now we add it to the long list of things we have to "wait and see".
I feel much better about it today. Really, nothing has changed from the previous day. If we need to find funding for GHT, we find funding. If we qualify for the credit some day in the future then hooray. We can still use the money for GHT or invest it for Lauren's education. The rate she's going we're going to need a huge education fund to cover her many years of university...post doc... PhD...
We struggled with the decision to apply from a moral stand point - the sense of abusing the system. There's a family history that taints it for my generation. Wise words from others suggested this is not in the same category as our previous experience since we've been paying taxes in the first place and our time and money is taken up with so many things in caring for Lauren.
Turns out our moral dilemma was irrelevant as we were denied the credit. The government's reasoning is sound enough. Essentially they've stated the delays and complications our pediatrician outlined in the form could be due to her syndrome or they could be a factor of her age.
This is true. We can't say anything for certain.
On one hand, we are very thankful that she's not currently experiencing some of the severe complications that can come with Noonan Syndrome. On the other, we're disappointed because the money was going to be invested to pay for growth hormone therapy in the not too distant future.
We can and will reapply in the future, annually even, especially if things change for Lauren but for now we add it to the long list of things we have to "wait and see".
I feel much better about it today. Really, nothing has changed from the previous day. If we need to find funding for GHT, we find funding. If we qualify for the credit some day in the future then hooray. We can still use the money for GHT or invest it for Lauren's education. The rate she's going we're going to need a huge education fund to cover her many years of university...post doc... PhD...
Sunday, July 5, 2009
Oh Chute!
We're starting to plan for our family camping trip. This generally involves me making list upon list of things to take, eat, do, etc. Friday night Kevin and I discussed the idea of taking some board games for those moments when sitting still for a while might be good for all of us.
Saturday thus included a trip to Walmart, or "All-mart" as Kevin calls it, to consider the offerings. Home we come with Chutes and Ladders. Gone are the serpents of yesteryear, enter the chutes. Still the same premise only now funky blue ladders and zippy bright slides. Roman recognized what they were right away. Guess that's part of the appeal.
And Roman LOVES it. Loves it loves it loves it. He waits his turn, spins the spinner, counts the squares and we all celebrate whomever wins.
The funniest part is how he just can't sit still while he plays. He does hand stands and hops around like a frog, and all the while he's facing the board with his back end and legs flying around like an old truck on gravel.
He's happy. Deliriously happy.
Me too.
Saturday thus included a trip to Walmart, or "All-mart" as Kevin calls it, to consider the offerings. Home we come with Chutes and Ladders. Gone are the serpents of yesteryear, enter the chutes. Still the same premise only now funky blue ladders and zippy bright slides. Roman recognized what they were right away. Guess that's part of the appeal.
And Roman LOVES it. Loves it loves it loves it. He waits his turn, spins the spinner, counts the squares and we all celebrate whomever wins.
The funniest part is how he just can't sit still while he plays. He does hand stands and hops around like a frog, and all the while he's facing the board with his back end and legs flying around like an old truck on gravel.
He's happy. Deliriously happy.
Me too.
Wednesday, July 1, 2009
Opa's little girl
I'm the middle daughter of three girls. We love(d) getting dirty, playing with trucks and hanging around Dad's shop.
Looks like Lauren does too.
Looks like Lauren does too.
Opa's little girl
I am the second of three girls. We grew up in the country and love getting dirty, playing with trucks and hanging around Dad's shop.
Seems Lauren can follow along. Cute little dress loving the dump truck.
Seems Lauren can follow along. Cute little dress loving the dump truck.
Everything's coming up... potatoes!
Phew! Finally more potatoes! All but one red potato spud is showing its green and I expect that last one will pop up soon too. The russets are more reluctant but the original three are big enough for hilling up and three more are finally showing leaves above their little mounds.
Roman calls them french fry potatoes. Good to know he has his priorities.
Now that the beans have additional sets of leaves they're looking more promising
and my tomatilloes, though shorter than previous years, are starting to bloom.
Even an onion has a seed head. Not ideal but at least its growing vigorously.
The pear tree seems to be in trouble with a lot of the fruits shriveling to blackened nubs. We've only lived here four years and until last summer, I didn't care about the pear tree. Couldn't figure it out - when to harvest, what they were, and so on. Last year we mastered it knowing its a Clapp's Favourite made a difference. Now that we've canned some and been able to enjoy them on and off season, I'm anxious to see how many survive whatever this is. I'm sure we'll figure it out and I'm sure it's nothing we could've prevented...
Roman loves to see the pears growing and often explains how the pears grow from the flowers after the bees have eaten them.
Roman however had a bit of a tough day today. I think he misses the routine of school two afternoons a week. We've started a Tuesday morning gym programme though and he loves it! Laughing, giggling, running, jumping, smiling for an hour. It was amazing to watch.
He's changed so much this year and preschool has been instrumental. He's not as hesitant in new situations or quite as fearful of meeting new people so long as I send him off with a kiss and a reassuring, "I'll be right here..."
I'm looking forward to September and getting him to JK. He already talks about his new school, new friends and new toys to play with. He loves to learn and we're working through phonics. I'm sure it's the fear every parent has but I really hope he finds good new friends quickly. I'm not worried about him academically - besides, it's only JK - but I do ponder what kind of boy he'll become. Will he be a leader? Be strong in his opinions or remain a follower. Be kind and gentle or become a bully to children smaller than he is like he is with his sister. Guess we wait and see and do our best to shape him into a strong, gentle, smart boy.
Roman calls them french fry potatoes. Good to know he has his priorities.
Now that the beans have additional sets of leaves they're looking more promising
and my tomatilloes, though shorter than previous years, are starting to bloom.
Even an onion has a seed head. Not ideal but at least its growing vigorously.
The pear tree seems to be in trouble with a lot of the fruits shriveling to blackened nubs. We've only lived here four years and until last summer, I didn't care about the pear tree. Couldn't figure it out - when to harvest, what they were, and so on. Last year we mastered it knowing its a Clapp's Favourite made a difference. Now that we've canned some and been able to enjoy them on and off season, I'm anxious to see how many survive whatever this is. I'm sure we'll figure it out and I'm sure it's nothing we could've prevented...
Roman loves to see the pears growing and often explains how the pears grow from the flowers after the bees have eaten them.
Roman however had a bit of a tough day today. I think he misses the routine of school two afternoons a week. We've started a Tuesday morning gym programme though and he loves it! Laughing, giggling, running, jumping, smiling for an hour. It was amazing to watch.
He's changed so much this year and preschool has been instrumental. He's not as hesitant in new situations or quite as fearful of meeting new people so long as I send him off with a kiss and a reassuring, "I'll be right here..."
I'm looking forward to September and getting him to JK. He already talks about his new school, new friends and new toys to play with. He loves to learn and we're working through phonics. I'm sure it's the fear every parent has but I really hope he finds good new friends quickly. I'm not worried about him academically - besides, it's only JK - but I do ponder what kind of boy he'll become. Will he be a leader? Be strong in his opinions or remain a follower. Be kind and gentle or become a bully to children smaller than he is like he is with his sister. Guess we wait and see and do our best to shape him into a strong, gentle, smart boy.
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