First post to be finished is from December of 2013, the update (finally) from my November post. The update on test results. I need to heavily edit it because there have been a LOT more updates in the last 8 months, and the irony is that even once the post in finished, the topic is actually far from. But I will do my best,
And tonight I bring you "No News is Good News... Almost"
***
I've always hated that phrase. I've hated to say it as a nurse, and I've hated to hear it as a patient. No news isn't always good news. No news can mean that the results are normal, or it could mean that the ball has been dropped (as it has on me more than once). No news could mean no news yet, or bad news once we get the proper consultations or specialists in place. I understand that a busy doctor's office can't call people with the results of all tests all the time, but I think that when it's a specific diagnostic test, then it would be nice to get a call regardless.b
It has been a long, hard, frustrating road since November, when the rest of us got tested for Celiac disease. Hubbyman and Princess came back negative in their bloodwork (only once I called the doctor, and fought with the receptionist, which was the original rant of this post). While we are GF at home, they enjoy gluten when we're out and about with no issue (other than the practical implications so as not to contaminate Tobes). It turns out that my test results weren't so straightforward. Apparently I am deficient in the component of the blood that they test for in the Celiac bloodwork, meaning my negative result meant nothing. I started getting some pretty gnarly symptoms in January, which led to the decision for me to get an endoscopy in May. I got some answers (negative for Celiac disease), but a whole lot more "wait and see", and "we'll call you"s that didn't happen. I barely saw the specialist (and only after I harassed the nurse. Apparently they thought I'd be fine with a printout, and wouldn't have any questions), and then got conflicting information from the pharmacist when my prescription changed. It's a good thing I'm a nurse, and know how to play the system...
I'm hoping more answers will come next week, when I actually meet the gastroenterologist who did the procedure in May for longer than 2 minutes while I'm still groggy. I'm hoping to hear more about my results from 3 months ago, and more about what I can/cannot do to help me feel better (my symptoms have started to appear and worsen again in the last few weeks).
The discussion of what drives me to get these answers can be saved for another day. For now what matters is that the whole "no news is good news" thing is a load of crock, and the waiting game sucks.
Sunday, August 17, 2014
Saturday, August 16, 2014
Summer Blog Challenge
I have not blogged since last November. It's not for lack of trying - my draft queue is filled with half-written ideas, little starts and random thoughts. A whole bunch of cool friends (who also blog) are doing a Summer Blog Challenge, and I feel like it's as good a time as any to catch up, to finish some of those thoughts, and to explore some new ideas.
My biggest goal from this challenge is to learn how to finish a post. I have a tenancy to start one topic, link it to another one, and then leave both expertly unfinished. Then they both get banished to my "draft list", never to be seen again, I curse the whole notion of "blogging" in general, and go rot my brain on bad reality TV.
Take this post for example. It's taken me 2 hours to write this. Why? Because I've started at least 4 new topics in this post in the last 2 hours, none of which have anything to do with the Summer Blog Challenge (other than the fact that they are blog posts, posts that I might write during the challenge. This summer).
So before I start my 5th topic (it's a toss-up between "I'm not really a dance mom", and "I like helping people"), I will end this here. Look at me finishing a thought, and then hitting publish before everything is muddled!
Small victories, my friends ;)
My biggest goal from this challenge is to learn how to finish a post. I have a tenancy to start one topic, link it to another one, and then leave both expertly unfinished. Then they both get banished to my "draft list", never to be seen again, I curse the whole notion of "blogging" in general, and go rot my brain on bad reality TV.
Take this post for example. It's taken me 2 hours to write this. Why? Because I've started at least 4 new topics in this post in the last 2 hours, none of which have anything to do with the Summer Blog Challenge (other than the fact that they are blog posts, posts that I might write during the challenge. This summer).
So before I start my 5th topic (it's a toss-up between "I'm not really a dance mom", and "I like helping people"), I will end this here. Look at me finishing a thought, and then hitting publish before everything is muddled!
Small victories, my friends ;)
Tuesday, November 26, 2013
The Story.
I have eluded to it on facebook, but it's an awkward conversation to have. When people ask me "what's new", where do I begin? It has been a long, long journey, and it's one many people don't really know the details about. So when I tell them Tobes has Celiac Disease, it's often met with blank stares, or comments like "how did you even think to check for that??" He never seemed "sick" or was hospitalized, his symptoms weren't easy to see, or readily talked about.
I am writing this post for 2 reasons: I am writing to answer the questions from people I know who are surprised by the news. I am also writing because it was the personal experience of others (both in-person and expressed on blogs) that helped me connect the dots for Tobes. I am not saying that everyone should be tested for Celiac Disease, I'm not saying everyone has Celiac Disease, but maybe someone else out there will read Tobes' story, and maybe it will connect some dots for them.
It mostly started just over a year ago, though looking back there were signs long before that. Tobes always had a bloaty belly, ever since he was a baby. It was chub to begin with, but at some point that chub turned into bloat. It came out from below his ribs, and it's size varied day-to-day. He was gassy, he was colicky, but so was his sister. She grew out of it, he didn't exactly. He was never an excellent sleeper, but neither was Princess. As they say, hindsight is 20/20.
Just over a year ago, Princess started school, and while I assumed that the routine would help with a nap schedule and rest, Tobes just wasn't sleeping. He had bags under his eyes, and that lack of sleep permeated everything. He was irritable, clingy, and sad. When he did get rest, it was riddled with night terrors and nightmares, sometimes 7-8 times a night. Words cannot describe the feeling of having my little boy in my arms, stuck in a twilight, unable to wake up or fall back into deeper sleep, and screaming and crying all the while. Sometimes it was downright scary. There was a lot of crying. From all of us. We were impatient, irritable, and we just hoped he would grow out of it eventually.
It was by chance that I found a pamphlet in my office at work for mental health support services for young children. I filled out the 7-page intake, participated in a half-hour phone interview, and got an appointment for him. Through that we learned awesome coping techniques for him and better ways to parent our exhausted, anxious toddler. Tobes had separation anxiety that was made worse when Princess started school (they had never been apart otherwise) but through bloodwork we also learned he was severely iron-deficient, which was causing to Restless Leg Syndrome, which was thought to be related to the night-terrors. He was started on iron, and between that and the coping techniques, we were on an upswing. He started to sleep longer stretches, and he was happier more often. His tantrums and meltdowns lessened in frequency, and they started to get easier to manage.
This fall, however, things started to fall apart again. His iron levels weren't coming up the way they were expected to, his sleep was regressing again, and the GI side-effects of the iron medication reared their ugly head (despite the first 4 months of the supplements going along just fine). He stopped eating as well, and started to complain about tummy aches. He was hungry all the time, but after 2-3 bites, he was "full". And if we pressed him to eat more, he was often sick to the point of vomiting after.
All this time, I had been researching and reading and gathering information. I read about different causes of iron deficiencies in small children, I read about RLS, nightterrors, and about mental health in toddlers and preschoolers. At the start of this whole process, I had also talked to the friends I knew who had gone GF without a diagnosis, but in hopes it would help their children with behavioral or other issues (and it did for many of them). I read up on Celiac disease, along with a myriad of other things, and some boxes started to tick that I couldn't ignore. His iron deficiency, belly bloat, anxiety, and even his weakened tooth enamel (which we just assumed was genetic and from me) were on list after list of symptoms.
Tobes' doctor wanted to explore the iron issue deeper, and I asked if he could add on the "Celiac blood test" while we were at it. He was skeptical, asked a bunch of questions, and finally relented. He had never seen the worst of the bloat. He didn't understand the depth of the sleep issues. But he added it to the req and we got him tested.
I got the call mid-October to come in for the results. My doctor was dumfounded. Tobes' results for the test were astronomically high (in the THOUSANDS, where a positive is considered anything greater than ten), and we were given a referral to the pediatric clinic at the local children's hospital. It was the end of October when we saw the pediatric GI specialist, who was almost prepared to diagnose Tobes based on the initial bloodwork alone (the Celiac blood test is not the sole diagnostic test for the disease in Canada, but the chances of him having a false negative with that high a number were apparently incredibly low). The rest of the tests were done and it's confirmed, Tobes has Celiac disease.
We are now just over 2 weeks of him being gluten-free, and the rest of us have been tested for it as well (waiting on results). It hasn't been easy, but that is for another post. It will be worth it. Celiac disease is an autoimmune disorder. He is battling with potentially 3 years of intestinal damage - every molecule of gluten Tobes has consumed has caused his body to attack his gut. It will potentially take years for the damage to be repaired, but it will be repaired. But in just the last 2 weeks, Tobes has started to transform. We have been prepared for the withdrawal symptoms many have warned us about, but his cheeks have pinked up (my translucent toddler had colour), he generally handles change and transition better, his sleep has overall started to improve again, and the GI issues that plagued him seem to be a thing of the past (he has been off medication for that since 2 days after he went GF). It will be a lifelong journey for him, but we are starting the first few steps.
I am writing this post for 2 reasons: I am writing to answer the questions from people I know who are surprised by the news. I am also writing because it was the personal experience of others (both in-person and expressed on blogs) that helped me connect the dots for Tobes. I am not saying that everyone should be tested for Celiac Disease, I'm not saying everyone has Celiac Disease, but maybe someone else out there will read Tobes' story, and maybe it will connect some dots for them.
It mostly started just over a year ago, though looking back there were signs long before that. Tobes always had a bloaty belly, ever since he was a baby. It was chub to begin with, but at some point that chub turned into bloat. It came out from below his ribs, and it's size varied day-to-day. He was gassy, he was colicky, but so was his sister. She grew out of it, he didn't exactly. He was never an excellent sleeper, but neither was Princess. As they say, hindsight is 20/20.
Just over a year ago, Princess started school, and while I assumed that the routine would help with a nap schedule and rest, Tobes just wasn't sleeping. He had bags under his eyes, and that lack of sleep permeated everything. He was irritable, clingy, and sad. When he did get rest, it was riddled with night terrors and nightmares, sometimes 7-8 times a night. Words cannot describe the feeling of having my little boy in my arms, stuck in a twilight, unable to wake up or fall back into deeper sleep, and screaming and crying all the while. Sometimes it was downright scary. There was a lot of crying. From all of us. We were impatient, irritable, and we just hoped he would grow out of it eventually.
It was by chance that I found a pamphlet in my office at work for mental health support services for young children. I filled out the 7-page intake, participated in a half-hour phone interview, and got an appointment for him. Through that we learned awesome coping techniques for him and better ways to parent our exhausted, anxious toddler. Tobes had separation anxiety that was made worse when Princess started school (they had never been apart otherwise) but through bloodwork we also learned he was severely iron-deficient, which was causing to Restless Leg Syndrome, which was thought to be related to the night-terrors. He was started on iron, and between that and the coping techniques, we were on an upswing. He started to sleep longer stretches, and he was happier more often. His tantrums and meltdowns lessened in frequency, and they started to get easier to manage.
This fall, however, things started to fall apart again. His iron levels weren't coming up the way they were expected to, his sleep was regressing again, and the GI side-effects of the iron medication reared their ugly head (despite the first 4 months of the supplements going along just fine). He stopped eating as well, and started to complain about tummy aches. He was hungry all the time, but after 2-3 bites, he was "full". And if we pressed him to eat more, he was often sick to the point of vomiting after.
All this time, I had been researching and reading and gathering information. I read about different causes of iron deficiencies in small children, I read about RLS, nightterrors, and about mental health in toddlers and preschoolers. At the start of this whole process, I had also talked to the friends I knew who had gone GF without a diagnosis, but in hopes it would help their children with behavioral or other issues (and it did for many of them). I read up on Celiac disease, along with a myriad of other things, and some boxes started to tick that I couldn't ignore. His iron deficiency, belly bloat, anxiety, and even his weakened tooth enamel (which we just assumed was genetic and from me) were on list after list of symptoms.
Tobes' doctor wanted to explore the iron issue deeper, and I asked if he could add on the "Celiac blood test" while we were at it. He was skeptical, asked a bunch of questions, and finally relented. He had never seen the worst of the bloat. He didn't understand the depth of the sleep issues. But he added it to the req and we got him tested.
I got the call mid-October to come in for the results. My doctor was dumfounded. Tobes' results for the test were astronomically high (in the THOUSANDS, where a positive is considered anything greater than ten), and we were given a referral to the pediatric clinic at the local children's hospital. It was the end of October when we saw the pediatric GI specialist, who was almost prepared to diagnose Tobes based on the initial bloodwork alone (the Celiac blood test is not the sole diagnostic test for the disease in Canada, but the chances of him having a false negative with that high a number were apparently incredibly low). The rest of the tests were done and it's confirmed, Tobes has Celiac disease.
We are now just over 2 weeks of him being gluten-free, and the rest of us have been tested for it as well (waiting on results). It hasn't been easy, but that is for another post. It will be worth it. Celiac disease is an autoimmune disorder. He is battling with potentially 3 years of intestinal damage - every molecule of gluten Tobes has consumed has caused his body to attack his gut. It will potentially take years for the damage to be repaired, but it will be repaired. But in just the last 2 weeks, Tobes has started to transform. We have been prepared for the withdrawal symptoms many have warned us about, but his cheeks have pinked up (my translucent toddler had colour), he generally handles change and transition better, his sleep has overall started to improve again, and the GI issues that plagued him seem to be a thing of the past (he has been off medication for that since 2 days after he went GF). It will be a lifelong journey for him, but we are starting the first few steps.
Friday, November 1, 2013
An Update
Hi everyone! I'm not sure how, but 4 months have passed since I last updated!! Many, MANY things have happened since then... We took an awesome family vacation out to the west coast, Princess started grade 1, she won another big trophy in Calgary for dance (and we head to Vancouver in just under a week for another competition!), and Tobes is back to doing gymnastics, and just started Irish Dance too (and giving both his coach and his dance teacher a run for their money!)
Biggest news though is the result of over a year of private struggle. Through many doctors and specialists and appointments we have come to the point that Tobes has been diagnosed with Celiac Disease. The news is terrifying but also comes as somewhat of a relief - a major diet change and he should be "Ok". I am in the process of writing it all out to share eventually - first to help to explain to everyone what drew us to this conclusion (not many people know the whole story), but also because of how much help it was for me to read the stories from others. The diagnosis was a bit of a struggle for us - we had people accuse me of jumping on the gluten-free bandwagon (which, if anyone actually knows me, knows how much I am DREADING going gluten-free), and our own doctor was dubious before he saw the bloodwork. Toby has been clinically diagnosed with the disease, and we have a fantastic specialist at the local children's hospital who has already provided us with so many resources!
I hope to have other updates soon, including the backstory to all this.
Happy Fall!
Biggest news though is the result of over a year of private struggle. Through many doctors and specialists and appointments we have come to the point that Tobes has been diagnosed with Celiac Disease. The news is terrifying but also comes as somewhat of a relief - a major diet change and he should be "Ok". I am in the process of writing it all out to share eventually - first to help to explain to everyone what drew us to this conclusion (not many people know the whole story), but also because of how much help it was for me to read the stories from others. The diagnosis was a bit of a struggle for us - we had people accuse me of jumping on the gluten-free bandwagon (which, if anyone actually knows me, knows how much I am DREADING going gluten-free), and our own doctor was dubious before he saw the bloodwork. Toby has been clinically diagnosed with the disease, and we have a fantastic specialist at the local children's hospital who has already provided us with so many resources!
I hope to have other updates soon, including the backstory to all this.
Happy Fall!
Thursday, June 13, 2013
Happy 3rd Birthday, Tobes!!
 |
| Just a few hours after he was born. |
 |
| Princess meets her baby brother for the first time. |
 |
| Sweet little 1 year old Tobes! |
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| 2 year old Tobes! |
 |
| My blue-eyed baby! (taken April 2013) |
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| Happy Birthday, Tobes! |
Tuesday, June 11, 2013
Happy 6th Birthday, Princess!!
To
my little girl who I have to start to admit just isn't that little
anymore,
To my little girl who speaks fluent French, as long as you don't ask her about it (apparently she can understand conversations between her two Francophone teachers, yet can't tell me the days of the week!),
To my little girl who won almost all of her competitions at her first Feis, but is too modest to brag about it (though that doesn't stop me...),
To my little girl who makes sure to thank Jesus for "all her family and all her friends" in her prayers, and loves the people in her life so much she would do anything for them,
To my little girl who reassures me that even though she's getting bigger, I can still call her "my little girl",
To my little girl who made me a mommy and in 6 years has taught me more about myself than I knew in the previous 24...
To my smart, beautiful, wonderful Princess - Happy 6th Birthday!!
 | ||
| Princess - 1 day old. |
 |
| 1 year old, running down the Hill of Tara in Ireland |
 |
| 2 years old in Victoria, BC and full of 'tude ;) |
 |
| Me and my beautiful 3 year old! |
 |
| Photogenic 4-year-old |
 | ||
| I am amazed at how young she looks here! Just taken last year (by Eye For It Photography) |
 |
| Princess and I on Sunday. We went on a Mommy-Daughter date! Out to lunch and then to the spa for manis/pedis!! |
Sunday, May 26, 2013
The End.
I want to start this post with a bit of a forewarning to those reading it. I am about to talk about my breastfeeding journey with my babies. I hesitated about whether or not to share this at first. I am not ashamed about the choices I have made, in fact, I am incredibly proud. I am not embarrassed about the act of breastfeeding or about talking about it - I am very much an advocate, and have managed to make a profession out of it. But despite how passionate I am about it, and how much of my life really does revolve around it, to talk about my personal experience is difficult for me at times - I do not want to make anyone feel uncomfortable.
I hope that you can read this post as my own personal experience, achievement, and struggle. It is not meant to cast judgement, disappointment, or shame on anyone else. If you have any questions, please feel free to contact me.
Now on to the post.
I was still nursing Tobes up to last week. He turns 3 in just a few weeks. It snuck up on me quickly - while I never gave it much thought, I didn't think that we would be "still" nursing at this point. It has had it's ups and downs, and while some days I feel touched out or even annoyed at the seemingly constant (every few days) demand for milk at this point, there is no words I can use to explain the feeling I have to have my little boy curled in my arms nursing, even now.
Princess nursed until she was just over 2 (approximately 26 months) - it's approximate because it happened so gradually I don't actually remember her "last nurse". All I know is that days between sessions grew longer and longer, until one day she came to nurse and had lost her latch - she couldn't figure out how to nurse anymore. She shrugged (literally - it was adorable!) and moved along her merry way, and that was the end.
Tobes' end was a little more pronounced. He was down to nursing one or two days a week, but those days could contain anywhere between 1 and 5 sessions, depending on what kind of day we were having, how he was feeling, if he was sick, etc. But last week the end of our nursing relationship was brought suddenly and unexpectedly before us.
Last Monday Tobes had a shower. Usual routine for a long time was to bundle him up in a towel afterwards, and snuggle before putting on jammies. Up until recently the snuggling also included nursing, though as he's gotten older and life has gotten busier, it has been more and more infrequent. That night, however, my sweet little boy sat in my lap, looked up at me with his big blue eyes, and batting his eyelashes he asked to nurse. I allowed him to, and after a few minutes, he looked in disappointment. "There no nuh-nuh!" he exclaimed (our word for nursing). I tried to express some, but only drops came out. I offered the other side to him, and the same thing happened. I explained that there might not be any nuh-nuh anymore, and we both shared a sad moment, and a snuggle. We have tried twice since then (last time was Thursday), and each time there has been no nuh-nuh, no matter if either of us are ready for it to be gone.
With Princess, the process was so gradual that it came to a silent, almost unnoticed end. It was driven by her, and my milk lasted long after she was done. This time around, I've run out of milk for my little boy. I know that he's more-than ready. We go days, sometimes a week without nursing, and have transitioned to snuggles and other things to comfort and bond with him. His immune system is better than any of ours, and while these last 3 times have been sad (for both of us!) the sadness was fleeting for him and he quickly moved on. I have been the one left reeling from it. I am excited for him to grow up and hit new and exciting stages, and so sad to lose this for myself.
For 80 months (6 years, 8 months) my body has been growing children. I have either been pregnant (including the pregnancy between Princess and Tobes), or breastfeeding (for an approximate total of 61 months). Now I am not. It has been nice to wear real bras, less breastfeeding-friendly clothing (like certain shirts and dresses) and not worry about pseudoephedrine in allergy season, but I will never breastfeed again. We aren't planning on having anymore children, and so this is the end of an era for me. It's a topic that I am passionate about both personally, and now professionally, but I am done my own personal journey with it.
I am grateful for the encouragement and support from my husband, my family, and my friends. I am grateful for La Leche League for giving me a place to fit-in. I am grateful for the kind strangers who gave me thumbs up, smiles, or understanding nods as I struggled to nurse my frantic babies on planes, in malls, and restaurants. I am thankful for everyone who respected my decisions even if they didn't agree or understand. I am thankful for those who questioned my decisions to further their own education and understanding. And most of all I am thankful for my beautiful Princess who made my first experience so easy and wonderful, and for my handsome Tobes who humbled me and reminded me that breastfeeding isn't a science, it's an art.
And now this is The End.
I hope that you can read this post as my own personal experience, achievement, and struggle. It is not meant to cast judgement, disappointment, or shame on anyone else. If you have any questions, please feel free to contact me.
Now on to the post.
I was still nursing Tobes up to last week. He turns 3 in just a few weeks. It snuck up on me quickly - while I never gave it much thought, I didn't think that we would be "still" nursing at this point. It has had it's ups and downs, and while some days I feel touched out or even annoyed at the seemingly constant (every few days) demand for milk at this point, there is no words I can use to explain the feeling I have to have my little boy curled in my arms nursing, even now.
Princess nursed until she was just over 2 (approximately 26 months) - it's approximate because it happened so gradually I don't actually remember her "last nurse". All I know is that days between sessions grew longer and longer, until one day she came to nurse and had lost her latch - she couldn't figure out how to nurse anymore. She shrugged (literally - it was adorable!) and moved along her merry way, and that was the end.
Tobes' end was a little more pronounced. He was down to nursing one or two days a week, but those days could contain anywhere between 1 and 5 sessions, depending on what kind of day we were having, how he was feeling, if he was sick, etc. But last week the end of our nursing relationship was brought suddenly and unexpectedly before us.
Last Monday Tobes had a shower. Usual routine for a long time was to bundle him up in a towel afterwards, and snuggle before putting on jammies. Up until recently the snuggling also included nursing, though as he's gotten older and life has gotten busier, it has been more and more infrequent. That night, however, my sweet little boy sat in my lap, looked up at me with his big blue eyes, and batting his eyelashes he asked to nurse. I allowed him to, and after a few minutes, he looked in disappointment. "There no nuh-nuh!" he exclaimed (our word for nursing). I tried to express some, but only drops came out. I offered the other side to him, and the same thing happened. I explained that there might not be any nuh-nuh anymore, and we both shared a sad moment, and a snuggle. We have tried twice since then (last time was Thursday), and each time there has been no nuh-nuh, no matter if either of us are ready for it to be gone.
With Princess, the process was so gradual that it came to a silent, almost unnoticed end. It was driven by her, and my milk lasted long after she was done. This time around, I've run out of milk for my little boy. I know that he's more-than ready. We go days, sometimes a week without nursing, and have transitioned to snuggles and other things to comfort and bond with him. His immune system is better than any of ours, and while these last 3 times have been sad (for both of us!) the sadness was fleeting for him and he quickly moved on. I have been the one left reeling from it. I am excited for him to grow up and hit new and exciting stages, and so sad to lose this for myself.
For 80 months (6 years, 8 months) my body has been growing children. I have either been pregnant (including the pregnancy between Princess and Tobes), or breastfeeding (for an approximate total of 61 months). Now I am not. It has been nice to wear real bras, less breastfeeding-friendly clothing (like certain shirts and dresses) and not worry about pseudoephedrine in allergy season, but I will never breastfeed again. We aren't planning on having anymore children, and so this is the end of an era for me. It's a topic that I am passionate about both personally, and now professionally, but I am done my own personal journey with it.
I am grateful for the encouragement and support from my husband, my family, and my friends. I am grateful for La Leche League for giving me a place to fit-in. I am grateful for the kind strangers who gave me thumbs up, smiles, or understanding nods as I struggled to nurse my frantic babies on planes, in malls, and restaurants. I am thankful for everyone who respected my decisions even if they didn't agree or understand. I am thankful for those who questioned my decisions to further their own education and understanding. And most of all I am thankful for my beautiful Princess who made my first experience so easy and wonderful, and for my handsome Tobes who humbled me and reminded me that breastfeeding isn't a science, it's an art.
And now this is The End.
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