It has been enormously difficult to get video of Timmy walking. Primarily because his favorite walking style is to just launch himself face first at whatever he wants and hope like hell that his feet follow. They only do maybe 50% of the time, so mommy must be ready for quick catches to avoid ER visits and many tears. And admittedly this isn't freestyle walking. He discovered an old fire engine toy of Connor's and not only does it have a handy walking handle, it has a great place to stash blocks and carry them across the room. He can ZIP this way! No more wear and tear on the knees. But apparently he thinks we should take it everywhere now so he always has his little red helper to keep his head from launching into the troposphere...
Sunday, June 28, 2009
Monday, June 22, 2009
Fairbanks Midnight Sun Festival
Every year Fairbanks hosts a Midnight Sun festival to celebrate the summer solstice. That is, after all, one of the most distinctive things about living at this latitude. On the longest day of the year, the sun sets at 12:48 am and promptly rises again less than two hours later at 2:44 am. That's a long day...even the darkness isn't truly dark. You can read outside with no illumination at 3 am, no problem. It's probably the most disconcerting thing about living here, and my least favorite feature of an otherwise idyllic time of year. I am ALMOST reconciled to it by the festival.
This is a big event for this area. Supposedly they expected 40,000 people to descend on the downtown this year. The event runs from noon to midnight and of course no electric lighting is required! We went quite early, coming in at about 1:30, but the crowds were pouring in by the time we escaped at 4. There's lots of booths, nothing outrageously cool as far as crafts, but many neat local clubs. For most people the entertainment and the food are more than attractive enough to bring them out in swarms. There was also a petting zoo and pony ride and kids rides to amuse the little ones. Once Connor saw the bouncy castle five seconds after our arrival, mommy got no peace until Connor got to do this:
Connor's favorite feature of any major amusement activity like this is face painting. He wanted a whole face spiderman mask but wasn't patient or still enough in the artist's opinion to get it, so he reconciled himself to a small spiderman face instead. Let me tell ya, that guy took his face art seriously.
He also vastly enjoyed the fire truck...the fireman was sweet and the perfect person to be ushering small children through the fun of sitting in the "hot seat". Thanks, Fairbanks Fire Dept, for making hundreds of little ones feel so special!
The kids got to munch on usually verboten treats. Timmy got a frozen banana sans chocolate dipping, while Connor enjoyed a kids' scoop of strawberry ice cream and cotton candy. He also snaked some of mommy's coveted cinnamon sugar pecans and declared them "tasty!"
Connor loved the pony ride. They led the children on these sweet little ponies in a slow trot around the river park.
Here's a pic of Connor admiring the view of the Chena river and the boaters below. He wants to boat badly, but mommy isn't trusting of Timmy's sense of self preservation or her own boating skill to go without daddy or grandparent. Any volunteers to take Connor out on his first canoe? (hint, hint Grandpa!)
This is a big event for this area. Supposedly they expected 40,000 people to descend on the downtown this year. The event runs from noon to midnight and of course no electric lighting is required! We went quite early, coming in at about 1:30, but the crowds were pouring in by the time we escaped at 4. There's lots of booths, nothing outrageously cool as far as crafts, but many neat local clubs. For most people the entertainment and the food are more than attractive enough to bring them out in swarms. There was also a petting zoo and pony ride and kids rides to amuse the little ones. Once Connor saw the bouncy castle five seconds after our arrival, mommy got no peace until Connor got to do this:
Connor's favorite feature of any major amusement activity like this is face painting. He wanted a whole face spiderman mask but wasn't patient or still enough in the artist's opinion to get it, so he reconciled himself to a small spiderman face instead. Let me tell ya, that guy took his face art seriously.
He also vastly enjoyed the fire truck...the fireman was sweet and the perfect person to be ushering small children through the fun of sitting in the "hot seat". Thanks, Fairbanks Fire Dept, for making hundreds of little ones feel so special!
The kids got to munch on usually verboten treats. Timmy got a frozen banana sans chocolate dipping, while Connor enjoyed a kids' scoop of strawberry ice cream and cotton candy. He also snaked some of mommy's coveted cinnamon sugar pecans and declared them "tasty!"
Connor loved the pony ride. They led the children on these sweet little ponies in a slow trot around the river park.
Here's a pic of Connor admiring the view of the Chena river and the boaters below. He wants to boat badly, but mommy isn't trusting of Timmy's sense of self preservation or her own boating skill to go without daddy or grandparent. Any volunteers to take Connor out on his first canoe? (hint, hint Grandpa!)
Saturday, June 20, 2009
Recent sewing projects
I've been sewing a bit lately...there's been a great sale on at Joann's and I cannot resist cheap fabric. I got everything I needed to finish Timmy's baby quilt for under $30. Now just to find the time to sew it!
But these projects were super quick. I made a pair of pj pants for Connor and made them the size indicated on the package for his measurements but they turned out way too big. Billowing, really. So I'm going to make the next size down in Lightning MacQueen fabric to match his new shirt. He fell in love with the applique and since I had a coupon I snatched it up for him and got it for only $2...anyone who knows about licensed character fabrics and notions knows this is a steal for this size applique!
I found the most adorable romper pattern for Timmy. I made this one for him, and have some really cute flag fabric for a 4th of July outfit. I'm going to get a tee for Connor and make him a appliqued tee out of the scraps. Boy 4th of July stuff is sparse and not so cute, so this is a nice solution that is actually affordable. It has some sweet little gathers at the front, is nice and cool, and hits above his knees so it doesn't catch as he crawls and tries to walk. I can whip one together in about 45 mins now that I'm familiar with the pattern, which is nice, since that's all the boys allow me for a project.
I would really like to get my three quilt projects done. I'm hoping when Charlie comes home I can go take a few quilting classes. I really enjoy it, but know how woefully sparse my knowledge is. I take many grievous shortcuts and would love to learn to hand quilt rather than just tie or machine stitch and hope for the best!
I'll take some pics of the kids modeling my latest projects...Timmy's napping right now, but he's going to be stuffed into the romper for the farmer's market this afternoon. And he'll be the cutest kid there, with the possible exception of his older brother!
But these projects were super quick. I made a pair of pj pants for Connor and made them the size indicated on the package for his measurements but they turned out way too big. Billowing, really. So I'm going to make the next size down in Lightning MacQueen fabric to match his new shirt. He fell in love with the applique and since I had a coupon I snatched it up for him and got it for only $2...anyone who knows about licensed character fabrics and notions knows this is a steal for this size applique!
I found the most adorable romper pattern for Timmy. I made this one for him, and have some really cute flag fabric for a 4th of July outfit. I'm going to get a tee for Connor and make him a appliqued tee out of the scraps. Boy 4th of July stuff is sparse and not so cute, so this is a nice solution that is actually affordable. It has some sweet little gathers at the front, is nice and cool, and hits above his knees so it doesn't catch as he crawls and tries to walk. I can whip one together in about 45 mins now that I'm familiar with the pattern, which is nice, since that's all the boys allow me for a project.
I would really like to get my three quilt projects done. I'm hoping when Charlie comes home I can go take a few quilting classes. I really enjoy it, but know how woefully sparse my knowledge is. I take many grievous shortcuts and would love to learn to hand quilt rather than just tie or machine stitch and hope for the best!
I'll take some pics of the kids modeling my latest projects...Timmy's napping right now, but he's going to be stuffed into the romper for the farmer's market this afternoon. And he'll be the cutest kid there, with the possible exception of his older brother!
Why we never take gates down...
...Timmy is a climber!
If you take a gate down, he is on it like shrink wrap! He LOVES to climb...couches, stairs, playground stuff. He keeps me on my toes for sure!
Friday, June 12, 2009
Diet changes for the Freels!
Timmy is young enough that he doesn't really miss gluten things. Connor, on the other hand, was a solid mac n cheese, bread, pancake, cookie loving little guy. I didn't feed him much of the sweets at all before, but I'm afraid to say Annie's organic mac n cheese and sandwiches were a lunch staple in our house. I already fought enough for him to eat chicken and veggies and fruit for dinner...I hated fighting about lunch too. So I started incorporating some sneaky nutrition fixes where I can, and I feel like I can really relax and let them enjoy what they like without fretting too much about whether they're getting all the vitamins and minerals they need to be truly well.
Some of the things I've done are straight out of "Sneaky Chef" by Missy Lapine, some from "Deceptively Delicious" by Jessica Seinfeld and some from the "Nutrition Book" by the Sears family. Others I've concocted on my own but work well. Keep in mind some of the things in these books will need to be adapted heavily -- Lapine in particular loves her some wheat germ, which is a definite no-no for gf kids. She also depends a lot on milk, bread and pasta as kid friendly vehicles for sneaky stuff, so it's not easy to adapt some things. A few things that DID work for me though...
- I started putting 1/4 cup of pureed pumpkin, yam and carrots into their Annie's Gluten Free Mac N Cheese. Connor actually ate MORE with this in it. Miraculous. It makes it sweeter and richer tasting, as well as making it a deep orange color that is more appealing.
- Added avocado to homemade chocolate pudding. I put in a half...might cut that a bit next time because it did have a slight aftertaste.
- Added Tbsp of pureed pumpkin to grilled cheese. No kidding, smear it on the gf bread making sure to cover it with cheese, the kids will snarf it like it's going out of style.
- Made strong raspberry juice concentrate to add to cold water...a Tbsp flavors it nicely with very little sugar. You could do this with nearly any fruit...I just cook down two cups with two cups of water, boil for 10 mins and voila! Some fruits do better with a little lemon added. For kids who can tolerate milk, raspberry and blueberry juice is absolutely ideal to add to "chocolate" milk. I put in a Tbsp of juice and less than a tsp of chocolate and it tastes richer and is a deeper chocolatey color with 1/5 the sugar.
- I add pumpkin, sweet potato and carrots to everything. Waffles, pancakes, muffins, tomato sauce. Rich in vitamin A and lycopene as well as vitamin E. So important for healing children!
- I'm using purees to replace half the fat in recipes where fat is not critical to the success of the recipe...for example, you can easily replace most of the fat in brownies with pureed blueberries. I put 1/2 cup of applesauce to replace half the butter in chocolate chip cookies.
- I buy one 64 oz jar of 100% fruit juice. I usually water that down to 1 oz of juice to 8 oz of water for Timmy, and 3 oz of juice to 6 oz of water for Connor. If you consequently buy fruit juice concentrate, you can mix it up in the 64 oz container and by filling it up to the top, you have already cut the juice in half with water (concentrates are usually 32 oz -37 oz). I then add a smidge more water for Connor; he's used to seeing me add water and always requests it, and has started rejecting undiluted juice boxes as too sweet.
A few guidelines I'm trying to stay with...
- Less than 40 g of added sugar. I don't count natural fruit sugars, just sucrose and doctored fructose. My personal demon is high fructose corn syrup so none of that. It horrifies me to my very soul that there is MORE than that in a single 12 oz can of root beer. The average person eats 153 lbs of sugar a year, or more than 1/2 cup a day (according to Duke University studies). And that's just sugar...if you add high fructose corn syrup and artificial sweeteners, people eat over 300 lbs of sweet stuff. No wonder type II diabetes is rampant. Besides, in cutting sugar myself, I'm finding that I enjoy other tastes more now that sweet isn't primarily what I'm after.
- Organic wherever possible. Tough to do up here with fruits outside of the summer months, but I belong to a local organic CSA for veggies. Sure makes a big difference to health and less impact on pocketbook.
- If I buy a treat, I look for real ingredients. I'd rather the boys have full fat ice cream with four real ingredients once a week than low fat ice cream with 30 "WTFO?" ingredients every day. Otherwise, if something is going to be doctored, I'll do it so I KNOW what's in it. Honestly, who knew polysorbate 80 is a standard low fat additive? What is polysorbate 80? Bad juju, my friend. I made my own chocolate frozen yogurt the other day with sugar, cornstarch, yogurt, cocoa and avocado. Pretty tasty and very healthy. Or a chocolate banana almond loaf sweetened with honey...high fat but it's good almond fat and extremely low sugar. Who knew dessert could have the same sugar content as a bran cereal? Or should I be shocked that the bran cereal has as much sugar as dessert? Accordingly, anything with sugar content over 15 g (again, exception is fruits and 100% juices) is treated as dessert.
- Sneak nutrition in but present healthy options still. Let kids pick what kind of fruit they want for dinner. I allow all fruit and veggies they want for snacks but rarely allow crackers or granola bars; those are saved for high calorie expenditure activities like bike riding or park time. We have things we call "sometimes treats." He asks for them a lot but knows that those are only for "sometimes." Shhh, even "sometimes" foods are doctored by mom -- my chocolate chip cookies have peanut butter and flax seed for vitamin E boost, applesauce to cut the fat and sugar, and almond meal in addition to garfava and brown rice flour to add healthy fat and fiber.
- I'm also trying to teach Connor about why he can't eat certain things but immediately have a tasty option to present when he has to forego something. I hated having to tell him no when the other kids enjoyed a cinnamon bun at the Art Festival but I whipped out mom's homemade cinnamon sugar gfcf corn chips and he happily munched those down, at a cost of 110 calories and only 4 g of sugar. Wonder how much those other kids ate...
- Connor gets to pick meals for dinner and help prepare them...this has gone a long way to making him at least try things...I get out books with pictures of the different food, he picks it and then helps me throw it in the pot to cook. He'll actually eat carrots and beans when he helps. I'm really pleased with how this is going, but we also get into food ruts when he discovers a favorite and mommy has to overrule his picking ham and peas over rice pasta for the fourth night in a row.
What are you doing to boost your family's health?
Some of the things I've done are straight out of "Sneaky Chef" by Missy Lapine, some from "Deceptively Delicious" by Jessica Seinfeld and some from the "Nutrition Book" by the Sears family. Others I've concocted on my own but work well. Keep in mind some of the things in these books will need to be adapted heavily -- Lapine in particular loves her some wheat germ, which is a definite no-no for gf kids. She also depends a lot on milk, bread and pasta as kid friendly vehicles for sneaky stuff, so it's not easy to adapt some things. A few things that DID work for me though...
- I started putting 1/4 cup of pureed pumpkin, yam and carrots into their Annie's Gluten Free Mac N Cheese. Connor actually ate MORE with this in it. Miraculous. It makes it sweeter and richer tasting, as well as making it a deep orange color that is more appealing.
- Added avocado to homemade chocolate pudding. I put in a half...might cut that a bit next time because it did have a slight aftertaste.
- Added Tbsp of pureed pumpkin to grilled cheese. No kidding, smear it on the gf bread making sure to cover it with cheese, the kids will snarf it like it's going out of style.
- Made strong raspberry juice concentrate to add to cold water...a Tbsp flavors it nicely with very little sugar. You could do this with nearly any fruit...I just cook down two cups with two cups of water, boil for 10 mins and voila! Some fruits do better with a little lemon added. For kids who can tolerate milk, raspberry and blueberry juice is absolutely ideal to add to "chocolate" milk. I put in a Tbsp of juice and less than a tsp of chocolate and it tastes richer and is a deeper chocolatey color with 1/5 the sugar.
- I add pumpkin, sweet potato and carrots to everything. Waffles, pancakes, muffins, tomato sauce. Rich in vitamin A and lycopene as well as vitamin E. So important for healing children!
- I'm using purees to replace half the fat in recipes where fat is not critical to the success of the recipe...for example, you can easily replace most of the fat in brownies with pureed blueberries. I put 1/2 cup of applesauce to replace half the butter in chocolate chip cookies.
- I buy one 64 oz jar of 100% fruit juice. I usually water that down to 1 oz of juice to 8 oz of water for Timmy, and 3 oz of juice to 6 oz of water for Connor. If you consequently buy fruit juice concentrate, you can mix it up in the 64 oz container and by filling it up to the top, you have already cut the juice in half with water (concentrates are usually 32 oz -37 oz). I then add a smidge more water for Connor; he's used to seeing me add water and always requests it, and has started rejecting undiluted juice boxes as too sweet.
A few guidelines I'm trying to stay with...
- Less than 40 g of added sugar. I don't count natural fruit sugars, just sucrose and doctored fructose. My personal demon is high fructose corn syrup so none of that. It horrifies me to my very soul that there is MORE than that in a single 12 oz can of root beer. The average person eats 153 lbs of sugar a year, or more than 1/2 cup a day (according to Duke University studies). And that's just sugar...if you add high fructose corn syrup and artificial sweeteners, people eat over 300 lbs of sweet stuff. No wonder type II diabetes is rampant. Besides, in cutting sugar myself, I'm finding that I enjoy other tastes more now that sweet isn't primarily what I'm after.
- Organic wherever possible. Tough to do up here with fruits outside of the summer months, but I belong to a local organic CSA for veggies. Sure makes a big difference to health and less impact on pocketbook.
- If I buy a treat, I look for real ingredients. I'd rather the boys have full fat ice cream with four real ingredients once a week than low fat ice cream with 30 "WTFO?" ingredients every day. Otherwise, if something is going to be doctored, I'll do it so I KNOW what's in it. Honestly, who knew polysorbate 80 is a standard low fat additive? What is polysorbate 80? Bad juju, my friend. I made my own chocolate frozen yogurt the other day with sugar, cornstarch, yogurt, cocoa and avocado. Pretty tasty and very healthy. Or a chocolate banana almond loaf sweetened with honey...high fat but it's good almond fat and extremely low sugar. Who knew dessert could have the same sugar content as a bran cereal? Or should I be shocked that the bran cereal has as much sugar as dessert? Accordingly, anything with sugar content over 15 g (again, exception is fruits and 100% juices) is treated as dessert.
- Sneak nutrition in but present healthy options still. Let kids pick what kind of fruit they want for dinner. I allow all fruit and veggies they want for snacks but rarely allow crackers or granola bars; those are saved for high calorie expenditure activities like bike riding or park time. We have things we call "sometimes treats." He asks for them a lot but knows that those are only for "sometimes." Shhh, even "sometimes" foods are doctored by mom -- my chocolate chip cookies have peanut butter and flax seed for vitamin E boost, applesauce to cut the fat and sugar, and almond meal in addition to garfava and brown rice flour to add healthy fat and fiber.
- I'm also trying to teach Connor about why he can't eat certain things but immediately have a tasty option to present when he has to forego something. I hated having to tell him no when the other kids enjoyed a cinnamon bun at the Art Festival but I whipped out mom's homemade cinnamon sugar gfcf corn chips and he happily munched those down, at a cost of 110 calories and only 4 g of sugar. Wonder how much those other kids ate...
- Connor gets to pick meals for dinner and help prepare them...this has gone a long way to making him at least try things...I get out books with pictures of the different food, he picks it and then helps me throw it in the pot to cook. He'll actually eat carrots and beans when he helps. I'm really pleased with how this is going, but we also get into food ruts when he discovers a favorite and mommy has to overrule his picking ham and peas over rice pasta for the fourth night in a row.
What are you doing to boost your family's health?
And then there were two...
We officially have another child with celiac disease. This is not a surprise...we were fully expecting the result we received, but were totally taken aback by the severity of Connor's celiac disease. The boys each have different genes, one each celiac and one each gluten sensitive, so Charlie and I obviously are double gened ourselves. I would never have guessed that Connor was as severe as he has proved to be, given that his symptoms were so much less dramatic than Timmy's. We took him off gluten almost a month ago, and we're not looking back.
He is HLA-DQ2 and DQ6 positive, which means that his particular brand of celiac disease is strongly associated with "brain fog", gluten ataxia, apraxia and aphasia. Since going off gluten 3.5 weeks ago, he has made more progress in his speech than in the previous year. He's using "-ing", actually using "is" and "the", possessives for people other than himself, and putting together sentences of increasing complexity. Speech has been our biggest worry with Connor -- he's been evaluated several times, and each time no one in the process could figure out why he didn't talk properly. At 30 months, he was testing at 18-20 months. At 36 months, he was testing at 20-24 months. Now he's matching markers for 36 months at almost 41 months, so he's done six months of catch up in less than a month. It's been nothing less than miraculous.
Other things that have dramatically improved...
- He's gained almost half an inch of height in a month, and one lb. Oddly enough, he's eating less though. His tests showed that he was actually absorbing less than 30% of what he was eating as opposed to 90-95% of a non celiac person. As a result, we suspect he has some nutritional deficiencies. Dr Fine and Dr Fasano estimated a full 6-12 months before his gut is fully healed and only then if he stay STRICTLY gluten free.
- Despite weight gain, he's actually had to have his pants tightened because belly swelling has gone down. I never particularly noticed he had a swollen tummy until it was gone.
- He's asking again for naps after quitting taking them for almost a year, and is sleeping at least 11 hrs at night as well. Considering that at 15 months he was getting up 8-10 times a night and kept that up until almost 3, this is damn near miraculous.
- He actually has healthy bathroom time. I won't share too much here, but he and I are both pleased with poop time! In the last few months before his diagnosis, he had been experiencing sudden unexplained uncontrolled diarrhea -- it even threatened his "Day Out with Thomas", it was so bad. We had to buy emergency underwear out on Baltimore harbor. And we took him to the Air and Space Museum in DC and had to go home because of a horrid series of accidents on the National Mall. Poor kid HATES having accidents, and he's had no episodes at all since going gluten free.
I am so glad that if the boys had to have this condition that Timmy was as dramatically sensitive as he is. He saved his brother a few years of pain, because I believe it would have taken me a much longer time to put together the puzzle from speech delay and some diarrhea. But I also believe that if I hadn't pushed so hard and been willing to depart from the military healthcare model, both children would be in much worse shape today. Celiac disease is a sneaky insidious disease that cripples people and shortens their lives; and unfortunately it is one of the most vastly underdiagnosed diseases in America today. It takes 11 years on average from onset of symptoms to find out what is wrong. That is about 11 years too long in my opinion, and all I can hope is that my sweet babies were caught in enough time to make sure that they will never feel the ill effects of unchecked CD.
I've jumped into gluten free baking and studying nutritional issues. For people interested in gluten intolerance, sensitivity, celiac disease, what have you...I strongly recommend "The Gluten Connection" by Sheri Lieberman. This book is revolutionary and ties many seemingly disconnected issues to include osteoporosis, fibromyalgia, weight gain, acid reflux, etc to gluten intolerance. You don't have to be full blown celiac like my children to really have gluten screw up your health.
I've take the kitchen completely gluten free. I bought some applications for gluten free shopping and cooking for my iPhone. I prepare and pack food for every outing. I've perfected a standard bread recipe, and found a kick ass chocolate cake recipe. I've read book after book about healing with food, and am sneaky chefing my butt off to get needed nutrients into the kids. I've got rid of the vast majority of prepared foods - not that we had many to begin with - but am hoping to take the whole family in the direction of organic fresh foods with a heavy emphasis on lean meat, vegetables, fruit and nuts with a smattering of whole grains like brown rice and quinoa. I joined a local organic community supported agriculture (CSA) and will be getting an amazing amount of fresh organic locally grown produce starting in a week or so. We are off of all artificial sweeteners and high fructose corn syrup is strictly verboten. I am strongly trying to avoid almost all food additives to include the polysorbate family and noxious food dyes. I'm seriously considering brewing my own kombucha. I bought a book about celiac disease for Connor and after an unfortunate shared cracker incident have repeatedly emphasized that he must check with mommy to find out if he's eating a "feel good" food. I've got plans in place for preschool, birthday parties, PCS, etc. I will be a gluten policeman until my kids can be responsible on their own for their own health.
I'm not saying any of this to be patted on the back, but just to show that this disease is totally manageable and practically nonexistent if it's actively pursued daily. And I am pursuing all these other health related changes because I think that the current American diet and food processing is seriously endangering our children's health -- the incidence of genetically modified foods, processing, celiac disease, diabetes, lupus, asthma, allergies and autism are all rising at roughly the same rate. That can't be entirely coincidental.
I'm going to follow up this post with some nutritional changes I'm making...we're doing a few incremental things (we're still eating too much pasta and bread IMO, but we're moving away from it...just to show what I'm trying to do. If people have any other ideas, I would love to hear them...
So...Connor has celiac disease. I gave him some extra hugs tonight, got "Wuv oo, mommy" and sigh...here we go, kiddo...let's make you well.
He is HLA-DQ2 and DQ6 positive, which means that his particular brand of celiac disease is strongly associated with "brain fog", gluten ataxia, apraxia and aphasia. Since going off gluten 3.5 weeks ago, he has made more progress in his speech than in the previous year. He's using "-ing", actually using "is" and "the", possessives for people other than himself, and putting together sentences of increasing complexity. Speech has been our biggest worry with Connor -- he's been evaluated several times, and each time no one in the process could figure out why he didn't talk properly. At 30 months, he was testing at 18-20 months. At 36 months, he was testing at 20-24 months. Now he's matching markers for 36 months at almost 41 months, so he's done six months of catch up in less than a month. It's been nothing less than miraculous.
Other things that have dramatically improved...
- He's gained almost half an inch of height in a month, and one lb. Oddly enough, he's eating less though. His tests showed that he was actually absorbing less than 30% of what he was eating as opposed to 90-95% of a non celiac person. As a result, we suspect he has some nutritional deficiencies. Dr Fine and Dr Fasano estimated a full 6-12 months before his gut is fully healed and only then if he stay STRICTLY gluten free.
- Despite weight gain, he's actually had to have his pants tightened because belly swelling has gone down. I never particularly noticed he had a swollen tummy until it was gone.
- He's asking again for naps after quitting taking them for almost a year, and is sleeping at least 11 hrs at night as well. Considering that at 15 months he was getting up 8-10 times a night and kept that up until almost 3, this is damn near miraculous.
- He actually has healthy bathroom time. I won't share too much here, but he and I are both pleased with poop time! In the last few months before his diagnosis, he had been experiencing sudden unexplained uncontrolled diarrhea -- it even threatened his "Day Out with Thomas", it was so bad. We had to buy emergency underwear out on Baltimore harbor. And we took him to the Air and Space Museum in DC and had to go home because of a horrid series of accidents on the National Mall. Poor kid HATES having accidents, and he's had no episodes at all since going gluten free.
I am so glad that if the boys had to have this condition that Timmy was as dramatically sensitive as he is. He saved his brother a few years of pain, because I believe it would have taken me a much longer time to put together the puzzle from speech delay and some diarrhea. But I also believe that if I hadn't pushed so hard and been willing to depart from the military healthcare model, both children would be in much worse shape today. Celiac disease is a sneaky insidious disease that cripples people and shortens their lives; and unfortunately it is one of the most vastly underdiagnosed diseases in America today. It takes 11 years on average from onset of symptoms to find out what is wrong. That is about 11 years too long in my opinion, and all I can hope is that my sweet babies were caught in enough time to make sure that they will never feel the ill effects of unchecked CD.
I've jumped into gluten free baking and studying nutritional issues. For people interested in gluten intolerance, sensitivity, celiac disease, what have you...I strongly recommend "The Gluten Connection" by Sheri Lieberman. This book is revolutionary and ties many seemingly disconnected issues to include osteoporosis, fibromyalgia, weight gain, acid reflux, etc to gluten intolerance. You don't have to be full blown celiac like my children to really have gluten screw up your health.
I've take the kitchen completely gluten free. I bought some applications for gluten free shopping and cooking for my iPhone. I prepare and pack food for every outing. I've perfected a standard bread recipe, and found a kick ass chocolate cake recipe. I've read book after book about healing with food, and am sneaky chefing my butt off to get needed nutrients into the kids. I've got rid of the vast majority of prepared foods - not that we had many to begin with - but am hoping to take the whole family in the direction of organic fresh foods with a heavy emphasis on lean meat, vegetables, fruit and nuts with a smattering of whole grains like brown rice and quinoa. I joined a local organic community supported agriculture (CSA) and will be getting an amazing amount of fresh organic locally grown produce starting in a week or so. We are off of all artificial sweeteners and high fructose corn syrup is strictly verboten. I am strongly trying to avoid almost all food additives to include the polysorbate family and noxious food dyes. I'm seriously considering brewing my own kombucha. I bought a book about celiac disease for Connor and after an unfortunate shared cracker incident have repeatedly emphasized that he must check with mommy to find out if he's eating a "feel good" food. I've got plans in place for preschool, birthday parties, PCS, etc. I will be a gluten policeman until my kids can be responsible on their own for their own health.
I'm not saying any of this to be patted on the back, but just to show that this disease is totally manageable and practically nonexistent if it's actively pursued daily. And I am pursuing all these other health related changes because I think that the current American diet and food processing is seriously endangering our children's health -- the incidence of genetically modified foods, processing, celiac disease, diabetes, lupus, asthma, allergies and autism are all rising at roughly the same rate. That can't be entirely coincidental.
I'm going to follow up this post with some nutritional changes I'm making...we're doing a few incremental things (we're still eating too much pasta and bread IMO, but we're moving away from it...just to show what I'm trying to do. If people have any other ideas, I would love to hear them...
So...Connor has celiac disease. I gave him some extra hugs tonight, got "Wuv oo, mommy" and sigh...here we go, kiddo...let's make you well.
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