From the day we brought Lauren home a question has lingered. Usually it's a quiet question hovering just out of reach, surfacing to consciousness in moments of solitude or half sleep, "Why me?"
Not in the self pitying, morbid sort of way but in the "Why has Lauren been given to me? What am I supposed to be doing? How am I intended to improve the world because of her presence?" way. Though not so elegantly worded.
Sometimes I believe the purpose has been to teach me patience. Waiting for time to pass, for her to grow, the ubiquitous "Wait and see..." mentality of so many specialists. Testing testing testing to see how much waiting I can actually survive.
This week a new purpose has finally come to the forefront and the pieces are fitting together perfectly.
I am building a website. I won't get into the convoluted details of how it's coming about but it is and good friends have stepped up to complete the design and coding for me. I am blessed. We are blessed.
To set the record straight, I can build websites. I can manage website development from nothing to glorious and manage the people who want them combined with those that build them. I cannot, however, make them look gorgeous. Not even close. Functional yes. Elegant? Like an elephant in a pink leisure suit.
TheSweetOne.ca will include relevant information, things we've been through, links that are important and, hopefully, get people talking and visiting. It will also link to a localized (Ontario based) support group environment. It will be a celebration of the successes in our family, our friends and the research community. It will, I hope, be a place people can find encouragement and the information they need especially with a new diagnosis. It will be the site I wish I found when we had Lauren's diagnosis.
I am so excited about this development. I am energized by the potential and the purpose it has given me. I know that this is something key to understanding why Lauren has been given to us.
It is a step and the dreams are growing...
Tuesday, June 30, 2009
Sunday, June 28, 2009
Things are climbing
Heat, rain, the threat of hail.. and that's just with Roman.
We covered the heirloom tomatoes for a few hours this week when the weather network posted a warning for golf ball sized hail. Of course this meant there was lots of gentle rain but we'll take it.
The beans are finally getting leaves tall enough to escape the slugs and 7 of my 9 red potato plants are showing leaves. The russets are still contemplating and I'm not sure when to give up hope. I could use the space to grow more lettuce if I knew they weren't ever going to come up.
The carrots that have been reseeded are also hiding. Maybe they ended up too deep? Learning for next year I guess.
My garden helper is always ready to go with me to see where things are at. He loves the lettuce and will be happier when the spicy mix is gone. I think he's looking forward to harvesting pretty much anything. Today he helped shell peas we bought at a local market though I had to get the pods open for him.
He's been more adventurous with food lately. He'll have a bite of something I'm having or, if he sees me feed it to Lauren, insist on having his own portion. He ate everything as a baby and toddler but became more selective when wanting to take more personal control. One of his current things is to say that he'll have his own 'next time' we have it. We try to remember to have that food again the next week just in case. Things like tacos, burritos, pasta casseroles, pancakes... things he used to eat without question.
Every once in a while he does truly sweet things. He tried a fresh pea then picked a nice one out of the bowl and fed it to Lauren. If it wouldn't have caused her a horrendous amount of gas pains later tonight I'd have let her have it. As it was she spit it back out unchewed - probably too foreign a texture. Roman said if he liked it, maybe Lauren would too. Of course he then proceeds to knock her over or do something equally obnoxious just to push my buttons.
One has to give him credit though. He's doing great with potty training! Today he went three times on his own. We've implemented a new penny programme - every time he goes to the bathroom on his own and finishes with washing his hands, he gets a penny. When he gets a certain amount, we'll go buy a new piece for his Thomas trains. Night time he does well if he doesn't drink too much. He can do it... he just needs to choose too.
We covered the heirloom tomatoes for a few hours this week when the weather network posted a warning for golf ball sized hail. Of course this meant there was lots of gentle rain but we'll take it.
The beans are finally getting leaves tall enough to escape the slugs and 7 of my 9 red potato plants are showing leaves. The russets are still contemplating and I'm not sure when to give up hope. I could use the space to grow more lettuce if I knew they weren't ever going to come up.
The carrots that have been reseeded are also hiding. Maybe they ended up too deep? Learning for next year I guess.
My garden helper is always ready to go with me to see where things are at. He loves the lettuce and will be happier when the spicy mix is gone. I think he's looking forward to harvesting pretty much anything. Today he helped shell peas we bought at a local market though I had to get the pods open for him.
He's been more adventurous with food lately. He'll have a bite of something I'm having or, if he sees me feed it to Lauren, insist on having his own portion. He ate everything as a baby and toddler but became more selective when wanting to take more personal control. One of his current things is to say that he'll have his own 'next time' we have it. We try to remember to have that food again the next week just in case. Things like tacos, burritos, pasta casseroles, pancakes... things he used to eat without question.
Every once in a while he does truly sweet things. He tried a fresh pea then picked a nice one out of the bowl and fed it to Lauren. If it wouldn't have caused her a horrendous amount of gas pains later tonight I'd have let her have it. As it was she spit it back out unchewed - probably too foreign a texture. Roman said if he liked it, maybe Lauren would too. Of course he then proceeds to knock her over or do something equally obnoxious just to push my buttons.
One has to give him credit though. He's doing great with potty training! Today he went three times on his own. We've implemented a new penny programme - every time he goes to the bathroom on his own and finishes with washing his hands, he gets a penny. When he gets a certain amount, we'll go buy a new piece for his Thomas trains. Night time he does well if he doesn't drink too much. He can do it... he just needs to choose too.
The evolution of friendship
I find myself pondering the relationships I currently hold. The ones closest to me, the ones I hold most important, the ones of convenience. I have come to the conclusion that one may have reached its end.
When Roman was 18 months old I tried joining a mommy group only to determine quickly that it wasn't something I could relate too. Most of the other moms were either too young in age or too young in life experience to relate to. The exception was one mother who was closer in age to me, had a boy the same age as mine and really didn't meld with the "younger" moms either.
We saw each other often and our boys actually played together - not just side by side - from a very early age.
With the addition of Lauren, things began to change. She loves Lauren dearly. Wishes she was her own sometimes. But there is a but. Sometimes she doesn't see past Lauren's syndrome. Little comments sneak in challenging Lauren's intelligence with a subtle, "well, if she's even able to..." or "but you don't know what you're going to get..."
But I do. I know what I have. A joy, a challenge, a strong willed little girl. Lauren has more spoken words now I ever expected for her age. She picked up a new one yesterday (ketchup) and another today ("all done") plus the sign for "help". She walks with barely a tumble now unless helped by her brother and is bright and smiley. She's beautiful even with 'her ears' as the friend will slide in. "I don't even notice them much any more..."
I also struggle with how the relationship between the boys is developing. Roman isn't a strong leader. He follows his buddy's every lead and how they are together now doesn't impress me at all. He becomes a child I never see when he's on his own or with gentler boys. He ends up wild and miserable.
On the flip side, I've recently met some wonderful families. Some in person, some by email, some soon to be in person. They all have two children around the same ages as mine. As parents we're all around the same "life" age also. And, they're all living with Noonan Syndrome. How can I pass this up? How can I not enrich our lives with more time spent with these families? The mothers are wonderful. The children are amazing and we all know the challenges of two children, one with specific unique needs.
In addition, I've also had a few opportunities to revisit friends with whom the passage of time goes unnoticed. Those few true souls you can see every few months or even years and know that it will be as if you'd never left. The people to be cherished.
These two groups of people I need to turn to. These people whom I hope read this blog and know our daughter is progressing in leaps and bounds and celebrate with us even from remote places.
Whether we've met in person, shared a meal or simply similar experiences, thank you for evolving with me and for loving my daughter just as she is.
When Roman was 18 months old I tried joining a mommy group only to determine quickly that it wasn't something I could relate too. Most of the other moms were either too young in age or too young in life experience to relate to. The exception was one mother who was closer in age to me, had a boy the same age as mine and really didn't meld with the "younger" moms either.
We saw each other often and our boys actually played together - not just side by side - from a very early age.
With the addition of Lauren, things began to change. She loves Lauren dearly. Wishes she was her own sometimes. But there is a but. Sometimes she doesn't see past Lauren's syndrome. Little comments sneak in challenging Lauren's intelligence with a subtle, "well, if she's even able to..." or "but you don't know what you're going to get..."
But I do. I know what I have. A joy, a challenge, a strong willed little girl. Lauren has more spoken words now I ever expected for her age. She picked up a new one yesterday (ketchup) and another today ("all done") plus the sign for "help". She walks with barely a tumble now unless helped by her brother and is bright and smiley. She's beautiful even with 'her ears' as the friend will slide in. "I don't even notice them much any more..."
I also struggle with how the relationship between the boys is developing. Roman isn't a strong leader. He follows his buddy's every lead and how they are together now doesn't impress me at all. He becomes a child I never see when he's on his own or with gentler boys. He ends up wild and miserable.
On the flip side, I've recently met some wonderful families. Some in person, some by email, some soon to be in person. They all have two children around the same ages as mine. As parents we're all around the same "life" age also. And, they're all living with Noonan Syndrome. How can I pass this up? How can I not enrich our lives with more time spent with these families? The mothers are wonderful. The children are amazing and we all know the challenges of two children, one with specific unique needs.
In addition, I've also had a few opportunities to revisit friends with whom the passage of time goes unnoticed. Those few true souls you can see every few months or even years and know that it will be as if you'd never left. The people to be cherished.
These two groups of people I need to turn to. These people whom I hope read this blog and know our daughter is progressing in leaps and bounds and celebrate with us even from remote places.
Whether we've met in person, shared a meal or simply similar experiences, thank you for evolving with me and for loving my daughter just as she is.
Friday, June 19, 2009
Bigger vs Older?
Lately I've become more aware of the phrase "When you're bigger...". It's a natural statement. For most people it's interchangeable with "when you're older".
It became even more apparent when Roman said, "When Lauren's bigger she can have [insert food here] to eat!"
I realized that the words we use needed to change as the phrases aren't interchangeable for us. Lauren will never be as big as Roman. Who knows when she'll be as big as he is now.
So there is now a conscious effort in this household to be very specific and Roman's a quick learner. He's probably not even aware of the difference but since I've switched, he's been using the proper terms too. He now says things like, "When Lauren is older, she'll sleep by herself." or "When Lauren is older she can have hot dogs too!"
Of course there are still appropriate uses of "bigger". When Lauren gets bigger, she's going to wallop her brother a good one...
It became even more apparent when Roman said, "When Lauren's bigger she can have [insert food here] to eat!"
I realized that the words we use needed to change as the phrases aren't interchangeable for us. Lauren will never be as big as Roman. Who knows when she'll be as big as he is now.
So there is now a conscious effort in this household to be very specific and Roman's a quick learner. He's probably not even aware of the difference but since I've switched, he's been using the proper terms too. He now says things like, "When Lauren is older, she'll sleep by herself." or "When Lauren is older she can have hot dogs too!"
Of course there are still appropriate uses of "bigger". When Lauren gets bigger, she's going to wallop her brother a good one...
Thursday, June 18, 2009
Busy busy bee
This has been a very busy and very exciting week for Roman. Our garden is moving along nicely though something is eating the bean leaves. Monday I spread straw over every bare patch to help control the weeds and keep the ground moist and cool. Roman spent most of the time playing in his sand box but when it came time to water, he was right in there. There's something about hoses and spraying water that my son can't resist.
Tuesday was Roman's last day at pre-school. It's a co-op school and our day to bring snack. Bringing the snack means you're also the busy bee. I'm sure it was more significant to me than to Roman to be the busy bee on the last day. The teachers loved his Show and Tell scrapbook page about the garden. They didn't realize we lived in the country and had lots of space for such things. Even more fun for the kids though was gym time outside where they could see the garbage truck empty four giant recycling bins. To clarify, the class has 8 boys in it. You can imagine the excitement over a garbage truck!
Yesterday was Roman's "No More Diapers" day party. We were having trouble transitioning into underwear. One day while encouraging Roman to take a potty break I was told, "No. I'm just going to pee in my diaper." Ah ha! So. Convenience is the issue. I suggested that his last day of school would be his last day of diapers and he agreed. A week later interest started to wane so I suggested a party on his first day of no diapers. This was a hit. The first thing he asked was whether we could have cupcakes and put bumble bees and ladybugs on them (which his sister had for her birthday in February). We finally decided on bumble bees and dragonflies...
The party was a success with just a few important guests and included throwing out his remaining pull-ups. We still have to work on nighttime dryness but he has been amazing. In the last two days he's really made the connection and has asked for potty time almost as often as I've suggested it. Hooray!!
Today was yet another busy day with the pre-school year end party at a local park. The park has a carousel and train which the school booked for one hour. Roman loves trains. He's pretty excited about horses too but the train topped the carousel. Three rides on one and two on the other.
Harvest wise, we had greens from our garden tonight for supper. Very nice to have them fresh - just cut and eat! Note for next year though, we don't need to plant the Spicy Italian Blend of mesclin mix. Phew! That stuff is peppery. I love flavour but it gets a might overwhelming. We were careful to give Roman only the mildest leaves and he ate all he could, dipping each leaf liberally in ranch dressing.
Tuesday was Roman's last day at pre-school. It's a co-op school and our day to bring snack. Bringing the snack means you're also the busy bee. I'm sure it was more significant to me than to Roman to be the busy bee on the last day. The teachers loved his Show and Tell scrapbook page about the garden. They didn't realize we lived in the country and had lots of space for such things. Even more fun for the kids though was gym time outside where they could see the garbage truck empty four giant recycling bins. To clarify, the class has 8 boys in it. You can imagine the excitement over a garbage truck!
Yesterday was Roman's "No More Diapers" day party. We were having trouble transitioning into underwear. One day while encouraging Roman to take a potty break I was told, "No. I'm just going to pee in my diaper." Ah ha! So. Convenience is the issue. I suggested that his last day of school would be his last day of diapers and he agreed. A week later interest started to wane so I suggested a party on his first day of no diapers. This was a hit. The first thing he asked was whether we could have cupcakes and put bumble bees and ladybugs on them (which his sister had for her birthday in February). We finally decided on bumble bees and dragonflies...
The party was a success with just a few important guests and included throwing out his remaining pull-ups. We still have to work on nighttime dryness but he has been amazing. In the last two days he's really made the connection and has asked for potty time almost as often as I've suggested it. Hooray!!
Today was yet another busy day with the pre-school year end party at a local park. The park has a carousel and train which the school booked for one hour. Roman loves trains. He's pretty excited about horses too but the train topped the carousel. Three rides on one and two on the other.
Harvest wise, we had greens from our garden tonight for supper. Very nice to have them fresh - just cut and eat! Note for next year though, we don't need to plant the Spicy Italian Blend of mesclin mix. Phew! That stuff is peppery. I love flavour but it gets a might overwhelming. We were careful to give Roman only the mildest leaves and he ate all he could, dipping each leaf liberally in ranch dressing.
Tuesday, June 16, 2009
Battle or War?
I'm exhausted. There are days, like today, when I'm simply tired of the fight. Tired of wrangling a preschooler. Tired of coddling a toddler. Tired of the constant noise and trail of disaster that is my house. Tired of feeling like and dressing like a mom. You know what I mean - if the pants don't have holes, they have stains. If they don't have stains, they definitely have food residue of some sort.
And tired of pushing Lauren's pediatrician.
Today I piggy-backed an appointment for Lauren onto Roman's follow up for his recent ear infection. He's fine which is good. Lauren continues to have a heavy juicy cough and, since we were going anyways, I asked them to check to make sure it's not settling into her chest. It's not. It's likely the residue of the latest virus plus the never-ending fluids of yet another molar coming through.
The conversation about Lauren returned to her digestive issues. The resident currently working with our regular doctor is very compassionate and listened to my concerns, discussed some options or theories then went to review with the doctor. They both returned and the discussion quickly returned to the same broken record. "Noonan syndrome digestive issues are about swallowing and reflux" and "she's just gassy" "maybe it's like everyone if they eat too much [insert food item here] they get gas or constipation". "The GI specialist I talked to says he doesn't know what would cause it..."
ARGH!!!
How many times do I have to clarify? Yes I know you talked to your GI guy. Yes. I understand everyone gets gas. Yes. I know Noonan Syndrome digestive issues don't include this (at least, not in the medical manual you keep consulting) but I KNOW what she's going through. I live with it. She lives with it. Don't tell me it's normal.
Once again I resorted to 'what if she didn't have Noonan's?' which resulted in stiffened spines. I promptly ended the conversation with a polite, "well, I've taken enough of your time for today. Thank you for your help."
If we need to continue to manage her diet like this - processing all her foods, limiting what she eats of any one thing, omitting legumes etc, - then fine. I'll do it but enough of theories. It's time for answers not more "it could be..."
I left the appointment weary with little will to continue the battle.
However, I am the only one who can fight for her the way it needs to be done.
Tonight I lick my wounds for tomorrow I wade back into battle, sword drawn to carry on the war.
And tired of pushing Lauren's pediatrician.
Today I piggy-backed an appointment for Lauren onto Roman's follow up for his recent ear infection. He's fine which is good. Lauren continues to have a heavy juicy cough and, since we were going anyways, I asked them to check to make sure it's not settling into her chest. It's not. It's likely the residue of the latest virus plus the never-ending fluids of yet another molar coming through.
The conversation about Lauren returned to her digestive issues. The resident currently working with our regular doctor is very compassionate and listened to my concerns, discussed some options or theories then went to review with the doctor. They both returned and the discussion quickly returned to the same broken record. "Noonan syndrome digestive issues are about swallowing and reflux" and "she's just gassy" "maybe it's like everyone if they eat too much [insert food item here] they get gas or constipation". "The GI specialist I talked to says he doesn't know what would cause it..."
ARGH!!!
How many times do I have to clarify? Yes I know you talked to your GI guy. Yes. I understand everyone gets gas. Yes. I know Noonan Syndrome digestive issues don't include this (at least, not in the medical manual you keep consulting) but I KNOW what she's going through. I live with it. She lives with it. Don't tell me it's normal.
Once again I resorted to 'what if she didn't have Noonan's?' which resulted in stiffened spines. I promptly ended the conversation with a polite, "well, I've taken enough of your time for today. Thank you for your help."
If we need to continue to manage her diet like this - processing all her foods, limiting what she eats of any one thing, omitting legumes etc, - then fine. I'll do it but enough of theories. It's time for answers not more "it could be..."
I left the appointment weary with little will to continue the battle.
However, I am the only one who can fight for her the way it needs to be done.
Tonight I lick my wounds for tomorrow I wade back into battle, sword drawn to carry on the war.
Sunday, June 14, 2009
Potato Patch
They're there! Today there are finally potato plants showing - three of them. This leaves at least another 12 russet plants to show their little green heads and another 8 or 9 red potato plants but hooray for the promise of something more!
Everything else is doing well too though the carrots continue to struggle having been eaten last week. The fence is holding and new rows have been seeded.
Roman has his last day of preschool this week. He's the 'busy-bee' which means it's a special day for him and he's to bring something for show-and-tell. We took pictures of him in the garden and created a scrapbook page including these photos. It's amazing how much he loves to help. When we were planting he would dig holds, insert seedlings, broadcast seeds for the lettuces and pop pea and bean seeds into their little holes. The squash was fun too having him count out 6 seeds for each hill.
He is such a cutie. It's so hard to believe he's only 3 1/2...
Roman with our garden sign
Our main garden - tomatoes, tomatillos, peas, onions, carrots, peppers, celeriac, beans, greens, squash and potatoes!
Everything else is doing well too though the carrots continue to struggle having been eaten last week. The fence is holding and new rows have been seeded.
Roman has his last day of preschool this week. He's the 'busy-bee' which means it's a special day for him and he's to bring something for show-and-tell. We took pictures of him in the garden and created a scrapbook page including these photos. It's amazing how much he loves to help. When we were planting he would dig holds, insert seedlings, broadcast seeds for the lettuces and pop pea and bean seeds into their little holes. The squash was fun too having him count out 6 seeds for each hill.
He is such a cutie. It's so hard to believe he's only 3 1/2...
Roman with our garden sign
Our main garden - tomatoes, tomatillos, peas, onions, carrots, peppers, celeriac, beans, greens, squash and potatoes!
Stepping Up
Lauren loves to stand at the top of the stairs with her nose pressed against the panel of the safety gate. With a few moments of Mama-Lauren time available, I decided to give her a try at going down. I quickly found that I had no idea how to teach her to climb down or up with her stubby little penguin legs.
So Tuesday we went to see Amy the Physiotherapist. Lauren doesn't crawl and she hates to put weight on her knees. Gets quite mad if we force her into it and will only stay for a moment if she does it herself. Unfortunately, going down the stairs at her age generally means using your knees.
Turns out down the stairs is going to have to start with Lauren spending time kneeling and playing on her knees to get used to the idea. Next we're to spend time sliding down a step or two on her belly before giving it a more serious try. We can also have her practice climbing on and off the mattress on the floor that is her bed.
Going up the stairs is going to be a free-for-all. Amy tried forcing Lauren to climb up the traditional toddler fashion and met with limited success. When Lauren is left to her own devices, she 'steps' up by extending her leg up and planting a foot as best she can. She then hauls the rest of herself up to the platform. She's surprisingly nibble in this way. She'll need support going up to avoid the backward tumble but collectively, Amy and I have decided that this just might be the best and indeed, only way for her to tackle it. With her legs so short, it actually looks as if Lauren can't get a knee on the next step and still have length left for leverage.
So, while stairs are our next step, I think it'll be a little while before we give it an intensive effort. When Lauren starts to be more determined about climbing up or wanting down then we'll deal with it. For now, I think we'll let her grow a bit and give her little legs a bit of time to catch up to the task. It certainly helps that she's still so small and light.
So Tuesday we went to see Amy the Physiotherapist. Lauren doesn't crawl and she hates to put weight on her knees. Gets quite mad if we force her into it and will only stay for a moment if she does it herself. Unfortunately, going down the stairs at her age generally means using your knees.
Turns out down the stairs is going to have to start with Lauren spending time kneeling and playing on her knees to get used to the idea. Next we're to spend time sliding down a step or two on her belly before giving it a more serious try. We can also have her practice climbing on and off the mattress on the floor that is her bed.
Going up the stairs is going to be a free-for-all. Amy tried forcing Lauren to climb up the traditional toddler fashion and met with limited success. When Lauren is left to her own devices, she 'steps' up by extending her leg up and planting a foot as best she can. She then hauls the rest of herself up to the platform. She's surprisingly nibble in this way. She'll need support going up to avoid the backward tumble but collectively, Amy and I have decided that this just might be the best and indeed, only way for her to tackle it. With her legs so short, it actually looks as if Lauren can't get a knee on the next step and still have length left for leverage.
So, while stairs are our next step, I think it'll be a little while before we give it an intensive effort. When Lauren starts to be more determined about climbing up or wanting down then we'll deal with it. For now, I think we'll let her grow a bit and give her little legs a bit of time to catch up to the task. It certainly helps that she's still so small and light.
Friday, June 12, 2009
The Grass Really is Greener...
We started our garden gradually - peas in one day, onions the next, spinach and lettuce soon after.
Now we have tomatoes, tomatillos and peppers growing plus celeriac, beans, squash and carrots.
Our potatoes though have yet to show a peep. Our neighbour's potatoes are coming up green and promising. Taunting me.
Turns out it's not actually the grass that's greener, it's the potato patch!
Now we have tomatoes, tomatillos and peppers growing plus celeriac, beans, squash and carrots.
Our potatoes though have yet to show a peep. Our neighbour's potatoes are coming up green and promising. Taunting me.
Turns out it's not actually the grass that's greener, it's the potato patch!
Sunday, June 7, 2009
The Endocrinologist - Take II
Thursday was our first trip to Mac in a while. We were scheduled for our first follow up with Lauren's endocrinologist at 10:30.
Imagine our surprise when we walked out of the elevator to nearly empty hallways. In 15 months, it's never been so quiet. We go into the clinic and it too is quiet. Within minutes of registering with the receptionist, we're already in to the exam room. Moments after that the nurse has Lauren weighed and measured.
Now we settle in expecting a bit of a wait but no! Lauren has barely had time to access where she is when Poof! here's Dr. M!
We have some good news, some okay news, some not surprising news and some answers I tried to get a while ago.
First, the answers:
Infants who are growth hormone (GH) deficient grow as a result of whatever is left from development in the womb. By 2 years of age, that's pretty much gone and growth slows to a crawl or stops completely.
GH development is a range. Different children produce different amounts to achieve the same effect. We may find that Lauren's body produces what's considered a 'normal' amount but her body needs to be producing more to achieve what is intended. Other kids might produce the same amount as Lauren and grow normally.
In addition to height, growth hormone helps with heart health, muscle strength and development and in some studies is linked to brain development and therefore intelligence. Dr. M admits to not putting a lot of faith in the intelligence studies. I can concur. Who's to say what mental development would've been without the therapy?
The good news: Lauren's thyroid is likely fine.
The okay news: She's settling into her own rhythm and her 50% height to weight ratio on the Noonan Syndrome chart is exactly where we want her to be.
The not surprising news: her growth is very slow. While her 50% ratio is exactly what we want, we need to help her maintain that. At her current height progression and weight to height ratio, all is good and without growth hormone therapy (GHT), she'll likely achieve a height of 5'.
Next steps for us: still meet with the nutritionist. It can't hurt and will probably help us ensure Lauren continues to eat well and grow as her body wants. Return to the endocrinologist in 6 months for the next follow up. At that point we will likely schedule a hormone stimulation test to fall around Lauren's 2nd birthday. The results of that test will establish the basis for our next set of decisions and actions.
For reference, based on my and hubby's heights, Lauren could have expected to be 5' 5". GHT, on average, adds 1-2 cm of growth per year or about 1/2". Starting Lauren on GHT when she's between 2 and 5 years old will likely net her the 5" she wouldn't attain on her own. Therapy would continue through puberty.
If Lauren's GH levels don't fall within the range for government funding, there are places we can apply to for coverage as well as appealing to the pharmaceutical company for support on compassionate grounds.
I asked about drug trials as an option however there aren't any currently running in Canada that Dr. M. is aware of. We could however, try through the US as, in Dr. M's words, the companies have a lot of money to invest depending on how much you're willing to travel. I asked, half joking, if perhaps Dr. M might wish to start one...
So we wait.
Ironically, this is the first time at Mac we haven't had to wait. For the first, and possibly only time, we left having paid less than $10 in parking.
Imagine our surprise when we walked out of the elevator to nearly empty hallways. In 15 months, it's never been so quiet. We go into the clinic and it too is quiet. Within minutes of registering with the receptionist, we're already in to the exam room. Moments after that the nurse has Lauren weighed and measured.
Now we settle in expecting a bit of a wait but no! Lauren has barely had time to access where she is when Poof! here's Dr. M!
We have some good news, some okay news, some not surprising news and some answers I tried to get a while ago.
First, the answers:
Infants who are growth hormone (GH) deficient grow as a result of whatever is left from development in the womb. By 2 years of age, that's pretty much gone and growth slows to a crawl or stops completely.
GH development is a range. Different children produce different amounts to achieve the same effect. We may find that Lauren's body produces what's considered a 'normal' amount but her body needs to be producing more to achieve what is intended. Other kids might produce the same amount as Lauren and grow normally.
In addition to height, growth hormone helps with heart health, muscle strength and development and in some studies is linked to brain development and therefore intelligence. Dr. M admits to not putting a lot of faith in the intelligence studies. I can concur. Who's to say what mental development would've been without the therapy?
The good news: Lauren's thyroid is likely fine.
The okay news: She's settling into her own rhythm and her 50% height to weight ratio on the Noonan Syndrome chart is exactly where we want her to be.
The not surprising news: her growth is very slow. While her 50% ratio is exactly what we want, we need to help her maintain that. At her current height progression and weight to height ratio, all is good and without growth hormone therapy (GHT), she'll likely achieve a height of 5'.
Next steps for us: still meet with the nutritionist. It can't hurt and will probably help us ensure Lauren continues to eat well and grow as her body wants. Return to the endocrinologist in 6 months for the next follow up. At that point we will likely schedule a hormone stimulation test to fall around Lauren's 2nd birthday. The results of that test will establish the basis for our next set of decisions and actions.
For reference, based on my and hubby's heights, Lauren could have expected to be 5' 5". GHT, on average, adds 1-2 cm of growth per year or about 1/2". Starting Lauren on GHT when she's between 2 and 5 years old will likely net her the 5" she wouldn't attain on her own. Therapy would continue through puberty.
If Lauren's GH levels don't fall within the range for government funding, there are places we can apply to for coverage as well as appealing to the pharmaceutical company for support on compassionate grounds.
I asked about drug trials as an option however there aren't any currently running in Canada that Dr. M. is aware of. We could however, try through the US as, in Dr. M's words, the companies have a lot of money to invest depending on how much you're willing to travel. I asked, half joking, if perhaps Dr. M might wish to start one...
So we wait.
Ironically, this is the first time at Mac we haven't had to wait. For the first, and possibly only time, we left having paid less than $10 in parking.
Wednesday, June 3, 2009
Uh oh! My daughter thinks she's a boy!
Lauren loves things with wheels, she hits things with her head and she pees standing up.
Tonight after I stripped her down for bath time, I sat her on the potty. She shook her head and squiggled to get down. I stood her back beside the tub while it filled and she promptly wandered naked to the full size toilet.
Lauren looked at the toilet, held onto the shoulder height seat with one hand on each side, centered herself, looked at me with that innocent yet troublemaker face she has and let 'er rip.
Yep. Puddle. And such a look of accomplishment on her face.
Now maybe she can teach Roman.
Tonight after I stripped her down for bath time, I sat her on the potty. She shook her head and squiggled to get down. I stood her back beside the tub while it filled and she promptly wandered naked to the full size toilet.
Lauren looked at the toilet, held onto the shoulder height seat with one hand on each side, centered herself, looked at me with that innocent yet troublemaker face she has and let 'er rip.
Yep. Puddle. And such a look of accomplishment on her face.
Now maybe she can teach Roman.
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