We got here after a leisurely 2 day trip back to Fairbanks. We've had a few adventures; our plumbing was a mess after four relatively inactive months, the kitchen was torn apart in a gf overhaul, and both the kids have been completely discombobulated by the light and time change.
Connor got a new "bickicycle" from Wal Mart. Oh goodness, what a sharp reminder we were back in Alaska! Because of the time and expense of shipping, bulky or heavy items get ordered a few times a year in small batches and once they're gone, they're gone. That includes bikes. Connor, being used to the amazing cornucopia of consumer goods in DC, was sure we could find a "blue one with green stripes". Uh UH. At the fourth store, we finally found a red one that was okay with him. Whew.
We've been working hard to get things done around here...we just did the lawn clean up and flower planting today. Tomorrow we're planning on walking to the park with our friends and maybe doing a family bike ride with Timmy's new tandem seat. We tried to get a bike trailer for him but again ran into that Alaska commodity issue and couldn't find one. Well he'll probably feel more secure close to mommy anyway. He also has a snazzy new helmet...not sure how he's going to feel about that!
I wish I had something deep and meaningful to say here, but I really don't. There's still a strong feeling of unreality about being back here...I love being in my own home, but the summer is so strange here I'm having a hard time adjusting to the dramatic light difference and the heat is hard as well. 80 degrees is vicious here in the Interior with no air conditioning!
Monday, May 25, 2009
Tuesday, May 19, 2009
Going back to Alaska...
Tomorrow we leave to go back home. I am so grateful to my parents and in laws for their support during this deployment...I would have gone crazy in more ways than one without their love, company and support for the past four months. But the snow has melted, the kitchen overhaul beckons, and we need to open our house to the sun, wind and delights of an Alaskan summer. You hate to miss a single moment of irises, moose and blue berries when it only lasts a moment.
So many things have made me glad we came down here to DC. We finally discovered why my family has been ill. Connor's speech has improved greatly. Timmy had access to the best medical care possible when he desperately needed it. The boys got to really know their grandparents in the way I want them to know them -- in fact, I think they both would happily go off to Indiana or Virginia without a second thought just to be with grandma and grandpa or Nani and Pop. We got to enjoy the National Aquarium, the National Zoo, the museums, a great preschool, wonderful gymnastics, all sorts of lovely things that are hard to come by in the wild North. We got to roam all over mom and dad's land in New York. We got to explore Luray Caverns. And we took an epic and thoroughly enjoyable trip to DisneyWorld. Amazing four months of adventure and fun.
I am so grateful I have the people I do in my life who are willing to open their hearts and homes to us. We are lucky indeed. And the best part is that my boys have known unconditional love every moment of their lives from every one in their lives, to the point that they don't even know how lucky they are. But I do. And I thank those who made that possible.
But now it's time to nest as our own little military unit in our own home. We have a new dietary adventure to embark on. We have bikes to ride in the midnight sun. We have parks to visit and moose to watch. We have gardens to hoe. We have milestones to tackle. Hours of bug hunting, sand digging and swinging. And daddy to welcome home after six long months of watching and waiting. Hopefully this last two months will pass in a blur of sticky summer days, and we'll have daddy safe home before we know it.
We love you all. We'll miss being here. We'll miss you. Daddy, come home safe...we're waiting.
So many things have made me glad we came down here to DC. We finally discovered why my family has been ill. Connor's speech has improved greatly. Timmy had access to the best medical care possible when he desperately needed it. The boys got to really know their grandparents in the way I want them to know them -- in fact, I think they both would happily go off to Indiana or Virginia without a second thought just to be with grandma and grandpa or Nani and Pop. We got to enjoy the National Aquarium, the National Zoo, the museums, a great preschool, wonderful gymnastics, all sorts of lovely things that are hard to come by in the wild North. We got to roam all over mom and dad's land in New York. We got to explore Luray Caverns. And we took an epic and thoroughly enjoyable trip to DisneyWorld. Amazing four months of adventure and fun.
I am so grateful I have the people I do in my life who are willing to open their hearts and homes to us. We are lucky indeed. And the best part is that my boys have known unconditional love every moment of their lives from every one in their lives, to the point that they don't even know how lucky they are. But I do. And I thank those who made that possible.
But now it's time to nest as our own little military unit in our own home. We have a new dietary adventure to embark on. We have bikes to ride in the midnight sun. We have parks to visit and moose to watch. We have gardens to hoe. We have milestones to tackle. Hours of bug hunting, sand digging and swinging. And daddy to welcome home after six long months of watching and waiting. Hopefully this last two months will pass in a blur of sticky summer days, and we'll have daddy safe home before we know it.
We love you all. We'll miss being here. We'll miss you. Daddy, come home safe...we're waiting.
Friday, May 15, 2009
Andrews Air Show...what a blast!
We blew off our last day of Virginia preschool and ran off to the Andrews AFB air show. It's quite the drive despite *technically* only being 54.2 miles from mom and dad's house since we have to go through three major highway changes and it's on the periphery of DC.
We got there at 11 and lo and behold! we had to ride school buses to get to the show. Yay! We got there just in time to watch the A-10/F-22 demo, and then we ran around to seven different airplanes and helos so Connor could test them all out. Then we sat and snacked on blueberries, crackers and frozen lemonade while we watched the Thunderbirds. Connor was entranced; Timmy thought it was loud.
We had a hard moment when Connor thought he had located daddy on a KC-10. He ran up and hugged the daddy doppelganger's hand. The poor guy was a little taken aback to be hugged by a vibrating preschooler, but understood and gave Connor a hug when he learned daddy was in Iraq. We watched the biplane demo from the school bus. Connor would have stayed happily for a lot longer, but the Timmy patience meter was running low and we still had a long drive home -- not to mention rus hour starts at 3.
It took us twice as long to get home as it did to go because it's Friday, it's DC, and of course Friday afternoon rush hour is an awesome time to shut down lanes to repaint lane lines. But both boys could not have been sweeter, more patient or have had more fun. Connor kept Timmy giggling all the way home doing Thunderbird demo runs with his new toy jet. You know it was a successful trip when there's a two hour monologue from the back seat about "loud jets with red tails. Look mom stars on tail! And then it went whoosh! so fast. I saw it. One, two, three, four! Four airplanes!"
I'm glad we braved the traffic!
We got there at 11 and lo and behold! we had to ride school buses to get to the show. Yay! We got there just in time to watch the A-10/F-22 demo, and then we ran around to seven different airplanes and helos so Connor could test them all out. Then we sat and snacked on blueberries, crackers and frozen lemonade while we watched the Thunderbirds. Connor was entranced; Timmy thought it was loud.
We had a hard moment when Connor thought he had located daddy on a KC-10. He ran up and hugged the daddy doppelganger's hand. The poor guy was a little taken aback to be hugged by a vibrating preschooler, but understood and gave Connor a hug when he learned daddy was in Iraq. We watched the biplane demo from the school bus. Connor would have stayed happily for a lot longer, but the Timmy patience meter was running low and we still had a long drive home -- not to mention rus hour starts at 3.
It took us twice as long to get home as it did to go because it's Friday, it's DC, and of course Friday afternoon rush hour is an awesome time to shut down lanes to repaint lane lines. But both boys could not have been sweeter, more patient or have had more fun. Connor kept Timmy giggling all the way home doing Thunderbird demo runs with his new toy jet. You know it was a successful trip when there's a two hour monologue from the back seat about "loud jets with red tails. Look mom stars on tail! And then it went whoosh! so fast. I saw it. One, two, three, four! Four airplanes!"
I'm glad we braved the traffic!
Monday, May 4, 2009
New blog
I'm contributing to a new blog. My girlfriend Sarah is making huge strides in healing her little boy's PDD-NOS with a GFCF diet and we put our heads together to post recipes that we've tested and found success. Check it out and discover GF cooking!
http://triedandtasted.blogspot.com/
http://triedandtasted.blogspot.com/
Sunday, May 3, 2009
So...our baby boy has celiac disease
I have been holding off posting about our trials and travails with Timmy's health until we had definitive answers. Now that we have one -- celiac disease -- I can tell the story. Maybe someone else in my shoes will stumble across this and have an epiphany and maybe this will give family and friends a better understanding of what celiac disease entails.
Just short of 6 months, I decided to let Timmy experiment with food. Connor had lunged at my lentils at 5 months, 3 weeks...so why not let Timmy gnaw a teething biscuit while I fed Connor his breakfast? I got my answer a few hours later when Timmy was screaming in uncontrollable shrieking pain. He couldn't nurse; all he could do was draw his legs to his chest and suffer. It went on for HOURS. My parents and I took turns walking the floor with him. Mom and I alternated floating in a warm bath with him. The only relief he seemed to find was when mom stashed a warm heating pad under a blanket and cuddled him belly down on it. Even then, he sobbed quietly in his exhausted sleep. Finally at 930 pm after 8 hours of shrieking, I took him into the ER.
Prince William Hospital was great..they rushed him straight back and did tons of testing: CT scans, ultrasounds, blood cultures, stool testing, a full gamut. They weren't able to find much wrong, an elevated level there, a lower level there. They finally diagnosed him with a probable intussesception (bowels telescoping inside out, common in baby boys) and emergency transported him to Inova Fairfax for a pediatric surgery consult. As we walked in the building, he hiccuped and started smiling at everyone. It was eerie...like someone flipped a switch. The team was still prepped to cut into his belly but the radiologist decided to do one last ultrasound. Thank goodness he did because they didn't find the suspicious area this time. They chalked it up to a self resolving intussesception and sent us home at 7 am, weary but grateful. As we left, a doctor tossed over her shoulder that we might think about celiac. Um, what's that?
The next day he had some horrible poops. Anyone that has changed an exclusively breastfed baby knows that it really doesn't smell much. It wins the smell test hands down over a formula fed baby's waste. This smelled like a dead body rotting in the sun. It was eye watering. It was the strangest color too...white and green. Sorry if that's TMI, but it was definitely odd enough to make everyone ponder.
A couple days later, I gave Timmy a couple noodles to play with as I cooked dinner. A few hours later, we started in again on the cycle of misery and uncontrollable crying. It lasted for a shorter period...9 hours rather than 18...but still agonizing and obviously excruciating for him. Again the horrid diapers. Mom and I combed the days the incidents occurred to look for common factors and the only thing we could find was that on both occasions could isolate only gluten ingestion. I then started researching and figured that celiac disease was gluten intolerance on steroids.
We did a follow up appt with both the general physician and the military clinic to get a GI referral in the Tricare system. Our GP, Dr Buchinsky, admitted there was a good possibility that was a problem, though she noted the severity of the symptoms didn't match classic celiac disease. Most celiacs have a more sneaky pernicious onset...kids end up looking like they came out of an Ethiopian famine with a big belly and thin limbs, some diarrhea and discomfort, etc. It takes years to get diagnosed. This was not at all like that. Dr. B ran a celiac panel but warned us it would likely not be positive since he had been gluten free since the second incident and the test requires steady gluten ingestion. It was indeed negative, but I still wanted to pursue a diagnosis through a specialist.
After a HORRID experience with a GI NP at Walter Reed, I blew off all the torturous things she wanted to do instead of celiac testing. I ordered private DNA testing and the test came back two weeks later strongly positive for celiac disease. It's impossible to be more strongly celiac...with the gene combo he has, celiac is inevitable. And it apparently reared its head early. Celiac is NOT an allergy. It is not a sensitivity. It is an autoimmune disease where the body sees an otherwise innocuous piece of bread as a lump of poison and makes the body attack itself. The resulting damage to organs, GI tract and nervous system is cumulative and can lead to other AI disorders like lupus and diabetes or even cancer. You cannot outgrow it.
Luckily, there is a cure: maintain a completely gluten free diet for life. What is gluten in, you say? Oh good Lord. It's in barley, wheat, oats and rye. Guess what is in half the food on supermarket shelves? Oh yeah, barley, wheat, oats and rye and their derivatives. No pizza for Timmy! The more processed it is, the higher the likelihood is that there is gluten in it.
As I've done more reading, I am just floored by how underdiagnosed this disease is. University of Maryland has found evidence that 1 in 132 people in the US have it. It's more like 1 in 32 or 1 in 54 for certain populations like Finnish, Irish and British. That means that around 2 million people in this country have it with only 15,000 actually diagnosed. But those numbers are growing. People are finally recognizing the prevalence of it and the wide diversity of symptoms associated with it. You don't have to be a malnourished waif before you get diagnosed. Celiac disease can be anything from constipation alternating with diarrhea to extreme pain like Timmy to neurological issues like ataxia, behavioral problems, etc. This is not a problem for just babies, young kids or elderly people. In the US people go an average of 11 years before diagnosis. That's a long time to suffer damage to your system.
Now Connor is being screened. He has a 50-75% chance of also being a celiac. I'm taking the entire kitchen gluten free. Timmy is sensitive enough to have a reaction from a kiss from a parent post sandwich. It's daunting, challenging and exciting all in one to embark on gluten free baking and cooking. We're going to be focusing on simple organic recipes with alternative baked goods and focus on keeping as healthy as possible.
In a way Timmy's severe celiac symptoms have been a blessing. If they had not been so dramatic, if he had been a less smiley happy baby, if he hadn't reacted as instantly as he did when we could isolate everything he had eaten so easily, if, if, if...we could have had a child with severe malnutrition, neurological complications, and severe weight loss before drawing the dots together. Now we've had only three exposures, one accidental brother-feeding-granola-bars incident unfortunately, and hopefully we can minimize any future exposures.
I'm sure I'll be blogging about this quite a bit in the future...my mind is reeling with all the implications of this diagnosis. But for now...I'm so grateful we have an answer.
Just short of 6 months, I decided to let Timmy experiment with food. Connor had lunged at my lentils at 5 months, 3 weeks...so why not let Timmy gnaw a teething biscuit while I fed Connor his breakfast? I got my answer a few hours later when Timmy was screaming in uncontrollable shrieking pain. He couldn't nurse; all he could do was draw his legs to his chest and suffer. It went on for HOURS. My parents and I took turns walking the floor with him. Mom and I alternated floating in a warm bath with him. The only relief he seemed to find was when mom stashed a warm heating pad under a blanket and cuddled him belly down on it. Even then, he sobbed quietly in his exhausted sleep. Finally at 930 pm after 8 hours of shrieking, I took him into the ER.
Prince William Hospital was great..they rushed him straight back and did tons of testing: CT scans, ultrasounds, blood cultures, stool testing, a full gamut. They weren't able to find much wrong, an elevated level there, a lower level there. They finally diagnosed him with a probable intussesception (bowels telescoping inside out, common in baby boys) and emergency transported him to Inova Fairfax for a pediatric surgery consult. As we walked in the building, he hiccuped and started smiling at everyone. It was eerie...like someone flipped a switch. The team was still prepped to cut into his belly but the radiologist decided to do one last ultrasound. Thank goodness he did because they didn't find the suspicious area this time. They chalked it up to a self resolving intussesception and sent us home at 7 am, weary but grateful. As we left, a doctor tossed over her shoulder that we might think about celiac. Um, what's that?
The next day he had some horrible poops. Anyone that has changed an exclusively breastfed baby knows that it really doesn't smell much. It wins the smell test hands down over a formula fed baby's waste. This smelled like a dead body rotting in the sun. It was eye watering. It was the strangest color too...white and green. Sorry if that's TMI, but it was definitely odd enough to make everyone ponder.
A couple days later, I gave Timmy a couple noodles to play with as I cooked dinner. A few hours later, we started in again on the cycle of misery and uncontrollable crying. It lasted for a shorter period...9 hours rather than 18...but still agonizing and obviously excruciating for him. Again the horrid diapers. Mom and I combed the days the incidents occurred to look for common factors and the only thing we could find was that on both occasions could isolate only gluten ingestion. I then started researching and figured that celiac disease was gluten intolerance on steroids.
We did a follow up appt with both the general physician and the military clinic to get a GI referral in the Tricare system. Our GP, Dr Buchinsky, admitted there was a good possibility that was a problem, though she noted the severity of the symptoms didn't match classic celiac disease. Most celiacs have a more sneaky pernicious onset...kids end up looking like they came out of an Ethiopian famine with a big belly and thin limbs, some diarrhea and discomfort, etc. It takes years to get diagnosed. This was not at all like that. Dr. B ran a celiac panel but warned us it would likely not be positive since he had been gluten free since the second incident and the test requires steady gluten ingestion. It was indeed negative, but I still wanted to pursue a diagnosis through a specialist.
After a HORRID experience with a GI NP at Walter Reed, I blew off all the torturous things she wanted to do instead of celiac testing. I ordered private DNA testing and the test came back two weeks later strongly positive for celiac disease. It's impossible to be more strongly celiac...with the gene combo he has, celiac is inevitable. And it apparently reared its head early. Celiac is NOT an allergy. It is not a sensitivity. It is an autoimmune disease where the body sees an otherwise innocuous piece of bread as a lump of poison and makes the body attack itself. The resulting damage to organs, GI tract and nervous system is cumulative and can lead to other AI disorders like lupus and diabetes or even cancer. You cannot outgrow it.
Luckily, there is a cure: maintain a completely gluten free diet for life. What is gluten in, you say? Oh good Lord. It's in barley, wheat, oats and rye. Guess what is in half the food on supermarket shelves? Oh yeah, barley, wheat, oats and rye and their derivatives. No pizza for Timmy! The more processed it is, the higher the likelihood is that there is gluten in it.
As I've done more reading, I am just floored by how underdiagnosed this disease is. University of Maryland has found evidence that 1 in 132 people in the US have it. It's more like 1 in 32 or 1 in 54 for certain populations like Finnish, Irish and British. That means that around 2 million people in this country have it with only 15,000 actually diagnosed. But those numbers are growing. People are finally recognizing the prevalence of it and the wide diversity of symptoms associated with it. You don't have to be a malnourished waif before you get diagnosed. Celiac disease can be anything from constipation alternating with diarrhea to extreme pain like Timmy to neurological issues like ataxia, behavioral problems, etc. This is not a problem for just babies, young kids or elderly people. In the US people go an average of 11 years before diagnosis. That's a long time to suffer damage to your system.
Now Connor is being screened. He has a 50-75% chance of also being a celiac. I'm taking the entire kitchen gluten free. Timmy is sensitive enough to have a reaction from a kiss from a parent post sandwich. It's daunting, challenging and exciting all in one to embark on gluten free baking and cooking. We're going to be focusing on simple organic recipes with alternative baked goods and focus on keeping as healthy as possible.
In a way Timmy's severe celiac symptoms have been a blessing. If they had not been so dramatic, if he had been a less smiley happy baby, if he hadn't reacted as instantly as he did when we could isolate everything he had eaten so easily, if, if, if...we could have had a child with severe malnutrition, neurological complications, and severe weight loss before drawing the dots together. Now we've had only three exposures, one accidental brother-feeding-granola-bars incident unfortunately, and hopefully we can minimize any future exposures.
I'm sure I'll be blogging about this quite a bit in the future...my mind is reeling with all the implications of this diagnosis. But for now...I'm so grateful we have an answer.
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