So, I had my first foray into gluten free, dairy free baking. That is right, I over came my fears--I'm no longer a gluten free baking virgin.
I found this recipe on how to make dairy free gluten free cinnamon rolls. It was modified from this cinnamon roll recipe. However, the caveat is the recipe is designed to make something like 80 rolls. I only really needed 4 rolls--and we only ate 1 for Christmas breakfast. So I used part of the dough to make crescent rolls for this recipe (yes, it is apple wrapped in crescent rolls, baked in a ton of butter and sugar---delicious!) The rest I was able to freeze to make future cinnamon rolls, crescent rolls, dinner rolls, or pizza dough. How awesome? One go many uses. It also required no kneading, few dishes, and so little effort--but does require planning and having at least 3 hours to make (2 hours worth of waiting). Even if you make the original version of the recipe, it is awesome to have dough in my freezer for future use.
I used a mixture of Bob's Red Mill gluten free baking mix and bean flour and I added my own 1 tsp of xantham gum per cup of flour (it comes out to 9 tsp). I also used soy free, dairy free butter stuffs called Earth Balance, which can be procured at Walmart.
It also says in the picture direction to bake at 400 degrees; however, the recipe says 375 degrees. I did 375 degrees and it took about 30 minutes to bake all the way through. I did not use her maple frosting from the recipe, but I used this frosting recipe from the clone of a cinnabon on allrecipes.com.
They turned out so well. I was worried and I didn't trust Evan for an accurate review. But my sister's brother-in-law's girlfriend (did you follow that, I almost didn't) had one this morning for her Christmas breakfast, and I heard second-hand rave reviews. So give it a try. It was awesome.
Sunday, December 25, 2011
Decking the Halls
We put up our tree the day after Thanksgiving. Aiden went to bed before we were done because he was tired, ornery, and into everything. I tried to get a good picture of him, but that blurry one of his face is the best that I could do. He does not ham it up for the camera like Kyle used to at that age, I need a super expensive fast camera to get good pictures of that quick one.
We had a good time though. The boys have really enjoyed the tree and it was so fun to finally decorate with Kyle and to pull out our ornaments from years passed that belong to him. We put the good ornaments up top and there was one branch on the bottom with ten bells---that was all Kyle's doing. We were able to find a good space in the corner by our front window and blocked it in with our two love seats. It served us well as an awesome setup. I'm sad it is going to need to come down this week.
We had a good time though. The boys have really enjoyed the tree and it was so fun to finally decorate with Kyle and to pull out our ornaments from years passed that belong to him. We put the good ornaments up top and there was one branch on the bottom with ten bells---that was all Kyle's doing. We were able to find a good space in the corner by our front window and blocked it in with our two love seats. It served us well as an awesome setup. I'm sad it is going to need to come down this week.
Saturday, December 10, 2011
First Glimpses of Winter
We had a small amount of snow in the early part of November before all the leaves had even fallen off the trees. Kyle was so excited to go out, and he wanted to make a snowman so badly. However, we did not have that much snow, and there was a ton of leaves below the few inches of snow. But we did go out so that I could shovel the sidewalk and driveway. Aiden did not like it at all, eventually, he was on ground that I had shoveled and I took his gloves off, so he tolerated it. Aiden's displeasure at being outside eventually drove us back inside---where Kyle's displeasure was extreme. I hope we'll get more before Christmas, so that it starts to feel like Christmas :)
October was When?
Way back in October, before Halloween, we went to the pumpkin patch. It was pretty limited and small. The corn maze did not even have any options for alternative paths :) However, it was great for the kids. We went with Evan's brother, Nolan, his wife Zaida, and their son, Ignacio. The picture of them on the haystacks is as close as we could get them. But it was a gorgeous day and Kyle and Aiden both loved the tractors.
We had a monkey of a Halloween! Evan worked so I took the boys trick-or-treating. Not my favorite job and in the future, I'll look forward to Evan doing that. Unfortunately our friends fell thru on going with us, so we headed out as a trio. Kyle had me go up to every door with him so he wasn't alone. We went down three blocks of one street and circled back up the next. He decided when he was done and we did not hit every house. Aiden stayed in his stroller the whole time and at house number 4, he got a dum dum and that kept him busy until we were back home. It was successful, but I'll be so glad when I don't have to do holidays alone while Evan works.
Monday, November 28, 2011
If You Give a Mouse a Cookie....
I know, not the type of thing you would expect or me either. But I did. It is just kind of disconcerting and instinctual. Well, the mouse darted down the baseboard again into the opening that runs into the whole corner of our cupboards. (Probably why we have a mouse, there are several such weird holes in our house--not our house, our rented house. Really, don't ask.)
I called my nieghbor. She said to get traps. I didn't have access to a car, so I just fished the glue traps out of the garage that were in the kitchen when we moved in (bad sign, I know). So far nothing has been caught, so yesterday, I added a huge dallop of peanut butter.
So when this happened, Kyle told me, "Mommy, don't be scared. It is just a mouse. Not a monster." Yup, seriously good advice from a three year old. Then Kyle asked me if he could pet the mouse. Not good advice from a three year old.
Tonight, as I was sorting clothes in the living room, I thought that Aiden was in the kitchen eating rice from his dinner off the floor. I had forgotten that I left the gate open. Minutes later, Aiden comes waddling into the living room, with his hand stuck in the glue trap and eating peanut butter directly off the trap with his mouth. I screamed like a little girl. I was seriously freaked that he was ingesting whatever that could be bad for him.
I had to hard core rip his little hand off the glue trap and then use olive oil to get the stickiness of the glue gone. Then clean his face of peanut butter. He did not ingest any of the trap and is fine. I still don't think that this is a funny store, but Evan said it made his day as did my neighbor, who I called in a panic. So I hope it makes your day.
Monday, November 21, 2011
Home Again, Home Again
I am sitting here at my window waiting for home health, apparently they came 20 minutes ago and because we were downstairs did not hear them.
While I was gone my tree in the front yard emptied its leaves. I hope the neighbor boy comes to rake soon.
It took six hours to discharge today. Five of those hours were trying to get the different teams to do their parts and a lot of "that's not my job" by various parties. There was also a hiccup with the fact that our insurance did not want us to get a home pump.
Kyle did fabulous, except that he doesn't mind causing himself more pain by laying on his button and sliding along. Pain does not deter him. Also neither does morphine. He was well behaved and charmed everyone who came into his room. I got so many compliments on how they know of no other three year olds that swallow their pills. It may not be a wonderful skill like counting or reading--but we know how to do our medicine and deal with doctors (which is what Kyle called the doctors and techs). Our techs were so good and did not wake him in the middle of the night. And surprisingly, the recliner was not the worst to sleep in.
Best part was how wonderful the vanilla dryers ice cream was in the cafeteria. Seriously. And how Kyle convinced a child life specialist that Aiden also needed a car (even though Aiden was at home) so he could get two cars instead of one.
Even though I've been mostly sitting on my butt at the hospital. I am surprisingly defeated And although I took my laptop, I never used it at the hospital. I feel over come by the prep needed for Thanksgiving and all the laundry that needs to get done. But Evan reminds me I can always do that tomorrow.
I have pictures of the hospital and my perfect patient, but they will have to wait. Thank you all for the support.
While I was gone my tree in the front yard emptied its leaves. I hope the neighbor boy comes to rake soon.
It took six hours to discharge today. Five of those hours were trying to get the different teams to do their parts and a lot of "that's not my job" by various parties. There was also a hiccup with the fact that our insurance did not want us to get a home pump.
Kyle did fabulous, except that he doesn't mind causing himself more pain by laying on his button and sliding along. Pain does not deter him. Also neither does morphine. He was well behaved and charmed everyone who came into his room. I got so many compliments on how they know of no other three year olds that swallow their pills. It may not be a wonderful skill like counting or reading--but we know how to do our medicine and deal with doctors (which is what Kyle called the doctors and techs). Our techs were so good and did not wake him in the middle of the night. And surprisingly, the recliner was not the worst to sleep in.
Best part was how wonderful the vanilla dryers ice cream was in the cafeteria. Seriously. And how Kyle convinced a child life specialist that Aiden also needed a car (even though Aiden was at home) so he could get two cars instead of one.
Even though I've been mostly sitting on my butt at the hospital. I am surprisingly defeated And although I took my laptop, I never used it at the hospital. I feel over come by the prep needed for Thanksgiving and all the laundry that needs to get done. But Evan reminds me I can always do that tomorrow.
I have pictures of the hospital and my perfect patient, but they will have to wait. Thank you all for the support.
Saturday, November 12, 2011
Practical Foodie
I told myself that if I finished the dreaded budgeting and bill pay for the month, then I could post about this subject. Well, obviously, I finished because I am posting.
Tonight I made a creamy avocado pasta (brown rice pasta for Aiden) with bacon and roasted asparagus on the side for dinner with only a ten minute clean up. It was delicious beyond measure.
However, I've come to realize that I have no one with which to share these sorts of things. I eat most dinners, including Saturday nights recently, with the boys. Kyle gets to the table, looks at his plate, and says, "I think I'm done." Aiden will eat anything, including on not one but three occasions fecal matter. He eats after he gets down from the table, meaning that he'll eat all the food on the floor. Starting last week, he's even eaten out of the garbage. Evan will come home late, take the bowl that I've left sitting out for him for hours (he likes it that way) and eat in front of the TV. If I ask and he likes it, he'll state that it was good. But he has been known to eat day old or more hamburgers and he raves about chili dogs as much as anything I make.
So I feel like there is no one with which to share my passion. And it is a passion, although I've only come to discover this in the last few weeks. If you follow me on pinterest you know how much food I pin. I have spent the last six months only repeating 10 dishes because there are so many yummy things out there I want to try. I make goodies several times a week and I am constantly reading recipe blogs. I also watch every cooking show that is on Hulu.
I don't claim to know a lot about cooking because I am still afraid of most meat that isn't chicken or ground. I have just mastered the pork roast. I don't shop in fancy stores (except for my children) and I coupon and try to save as much money as I can. I try to use inexpensive, easily accessible ingredients. I am very conscious of how much time and effort is required too because I don't have a lot of that to spare. However, I modify like crazy. Kyle can't eat dairy and Aiden can't eat dairy or gluten. I am actually going to learn how to bake gluten free and modify those recipes too. My current question, is it possible to make gluten free yeast breads (albeit substituting the normal flour, any dairy, and adding xantham gum?
But the point of this, I am considering starting a recipe blog. I know how many hundreds of thousands of millions (did I just go too far there) there are on the internet. But I want mine to be for the elimin8 diet (no dairy, wheat, soy, eggs, peanuts, tree nuts, shellfish, or sea food) and no corn as well. We are going on that diet starting in January and the recipe blogs out there are not designed for that. If I wanted to pay some money, I could gain access to some recipes. I found a website once, where you choose the things you were avoiding and it gave you the recipes it had that matched it. I can't find it now.
So my blog would be like that and after 3 weeks, we will add each element back in for a two week trial to see if there are any more foods that the boys react to. So not all the recipes would be for everything, but maybe I could have a way to group them or something. I want there to be better resources for those who have food reactions or allergies. And I want them to be normal sounding, looking and often substitutes for what most families do eat. It is nice to have a direct correlation between a regular cookie and something my kids can eat. As a mater of fact, we frequently don't take them to attend things where we know offending food will be if thee is no equivalent (like ice cream cake).
I frequently go to Whole Foods and even at the best organic, healthy, grocery store in the city I have a hard time finding food. If it is dairy free, it isn't gluten free and vice versa. We as an eosinophilic community need better resources and so do those who have problems with common foods.
What do you think? Would you read it? Do you think you'd make anything from it?
Tonight I made a creamy avocado pasta (brown rice pasta for Aiden) with bacon and roasted asparagus on the side for dinner with only a ten minute clean up. It was delicious beyond measure.
However, I've come to realize that I have no one with which to share these sorts of things. I eat most dinners, including Saturday nights recently, with the boys. Kyle gets to the table, looks at his plate, and says, "I think I'm done." Aiden will eat anything, including on not one but three occasions fecal matter. He eats after he gets down from the table, meaning that he'll eat all the food on the floor. Starting last week, he's even eaten out of the garbage. Evan will come home late, take the bowl that I've left sitting out for him for hours (he likes it that way) and eat in front of the TV. If I ask and he likes it, he'll state that it was good. But he has been known to eat day old or more hamburgers and he raves about chili dogs as much as anything I make.
So I feel like there is no one with which to share my passion. And it is a passion, although I've only come to discover this in the last few weeks. If you follow me on pinterest you know how much food I pin. I have spent the last six months only repeating 10 dishes because there are so many yummy things out there I want to try. I make goodies several times a week and I am constantly reading recipe blogs. I also watch every cooking show that is on Hulu.
I don't claim to know a lot about cooking because I am still afraid of most meat that isn't chicken or ground. I have just mastered the pork roast. I don't shop in fancy stores (except for my children) and I coupon and try to save as much money as I can. I try to use inexpensive, easily accessible ingredients. I am very conscious of how much time and effort is required too because I don't have a lot of that to spare. However, I modify like crazy. Kyle can't eat dairy and Aiden can't eat dairy or gluten. I am actually going to learn how to bake gluten free and modify those recipes too. My current question, is it possible to make gluten free yeast breads (albeit substituting the normal flour, any dairy, and adding xantham gum?
But the point of this, I am considering starting a recipe blog. I know how many hundreds of thousands of millions (did I just go too far there) there are on the internet. But I want mine to be for the elimin8 diet (no dairy, wheat, soy, eggs, peanuts, tree nuts, shellfish, or sea food) and no corn as well. We are going on that diet starting in January and the recipe blogs out there are not designed for that. If I wanted to pay some money, I could gain access to some recipes. I found a website once, where you choose the things you were avoiding and it gave you the recipes it had that matched it. I can't find it now.
So my blog would be like that and after 3 weeks, we will add each element back in for a two week trial to see if there are any more foods that the boys react to. So not all the recipes would be for everything, but maybe I could have a way to group them or something. I want there to be better resources for those who have food reactions or allergies. And I want them to be normal sounding, looking and often substitutes for what most families do eat. It is nice to have a direct correlation between a regular cookie and something my kids can eat. As a mater of fact, we frequently don't take them to attend things where we know offending food will be if thee is no equivalent (like ice cream cake).
I frequently go to Whole Foods and even at the best organic, healthy, grocery store in the city I have a hard time finding food. If it is dairy free, it isn't gluten free and vice versa. We as an eosinophilic community need better resources and so do those who have problems with common foods.
What do you think? Would you read it? Do you think you'd make anything from it?
Thursday, November 10, 2011
Forgotten Thanksgiving
So Evan came home on Monday from work and stated that he had been flipping channels on the radio. On one of them, he had heard Christmas music. He may or may not have used expletives to explain how he felt about that. He said, "It isn't even Thanksgiving yet." I furthered the discussion by mentioning that Tai Pan Trading and several other stores have been over run with Christmas, Costco even before Halloween.
Evan said, "Thanksgiving is like Beiber's little brother. Or his baby. Totally forgotten."
It probably doesn't help that Evan can't stand Christmas music any time of the year.
Then yesterday, we had another conversation about Thanksgiving. Evan was telling me how much he loves Thanksgiving. His reasoning that, "It is a low maintenance holiday. I don't have to give any gifts. I don't have to remember to do anything. And because I'm a male, I don't have to do any cooking either. All I have to do is eat."
My sister, Heidi, also loves Thanksgiving. For her I think it is because she loves all the food stuffs. She loves turkey, stuffing, mashed potatoes, gravy and pie. I don't know if it is because her birthday falls around and sometimes on Thanksgiving, but it is her favorite meal and she will order Thanksgiving food at restaurants and request it for special meals.
I'm not opposed to Thanksgiving, but I don't care for the food. I don't like turkey that much, I hate gravy, and I don't eat left overs. It seems like a waste of a good holiday and too crammed between Halloween and Christmas. Maybe if it had some more time, I could enjoy it. But I keep thinking, why even put up my Thanksgiving/fall decorations. Why not just pack them away. I'll have to get these bins out again in just a few weeks for that anyway. I also feel like it is just another Sunday dinner. Nothing too special.
So we'll see how we fair this year.
Evan said, "Thanksgiving is like Beiber's little brother. Or his baby. Totally forgotten."
It probably doesn't help that Evan can't stand Christmas music any time of the year.
Then yesterday, we had another conversation about Thanksgiving. Evan was telling me how much he loves Thanksgiving. His reasoning that, "It is a low maintenance holiday. I don't have to give any gifts. I don't have to remember to do anything. And because I'm a male, I don't have to do any cooking either. All I have to do is eat."
My sister, Heidi, also loves Thanksgiving. For her I think it is because she loves all the food stuffs. She loves turkey, stuffing, mashed potatoes, gravy and pie. I don't know if it is because her birthday falls around and sometimes on Thanksgiving, but it is her favorite meal and she will order Thanksgiving food at restaurants and request it for special meals.
I'm not opposed to Thanksgiving, but I don't care for the food. I don't like turkey that much, I hate gravy, and I don't eat left overs. It seems like a waste of a good holiday and too crammed between Halloween and Christmas. Maybe if it had some more time, I could enjoy it. But I keep thinking, why even put up my Thanksgiving/fall decorations. Why not just pack them away. I'll have to get these bins out again in just a few weeks for that anyway. I also feel like it is just another Sunday dinner. Nothing too special.
So we'll see how we fair this year.
Saturday, October 29, 2011
Edible Brain
Evan woke up this morning and told me about this crazy dream he had:
Evan had to have a brain operation to look at his brain. He had other people urging him to get it done, "because he could waste his mind if he didn't have it looked at." The surgeon cut his head open and placed slices of his brain onto what were like jello molds to look at the deterioration. Evan and I were only dating at the time and he was worried that I wouldn't stay with him if I knew. He came downstairs after the operation and brought me the molds. I proceeded to eat his brain. And his first thought was, "wow! she really isn't leaving."
When he told me this, my first though was, "oh my gross, I would never. That is so disgusting."
P.S. Kyle surgery is scheduled for November 18th. It will require that he be in the hospital overnight at least to make sure that the port is working correctly. I have to take a class up at Primary's before hand to make sure that I know what I am doing in cleaning, feeding, and changing the tube. I read the whole folder that the doctor sent me home with--I'm completely freaked out and I'm not sure that I can do this. It just seems so intensive and awful. If the tube comes out, I have 20-30 minutes to insert a new one before the hole can shrink too much. I have to carry an emergency kit wherever he goes. Talk about scary.
Evan had to have a brain operation to look at his brain. He had other people urging him to get it done, "because he could waste his mind if he didn't have it looked at." The surgeon cut his head open and placed slices of his brain onto what were like jello molds to look at the deterioration. Evan and I were only dating at the time and he was worried that I wouldn't stay with him if I knew. He came downstairs after the operation and brought me the molds. I proceeded to eat his brain. And his first thought was, "wow! she really isn't leaving."
When he told me this, my first though was, "oh my gross, I would never. That is so disgusting."
P.S. Kyle surgery is scheduled for November 18th. It will require that he be in the hospital overnight at least to make sure that the port is working correctly. I have to take a class up at Primary's before hand to make sure that I know what I am doing in cleaning, feeding, and changing the tube. I read the whole folder that the doctor sent me home with--I'm completely freaked out and I'm not sure that I can do this. It just seems so intensive and awful. If the tube comes out, I have 20-30 minutes to insert a new one before the hole can shrink too much. I have to carry an emergency kit wherever he goes. Talk about scary.
Thursday, October 27, 2011
Loan Sharks
This is the conversation that I had in the car with Kyle while we were waiting at a stop light on 4500 S and State Street.
Kyle: Is that a temple?
Me: Where?
K: (pointing) There. That white part.
M: (realized it was the Check City sign). No.
K: Yes!
M: No!
K: What is it?
M: It is a city scape. A picture of a city.
K: Why?
M: Well, the name of the store is Check City. So there is a picture of a city on their sign. Check City. Picture of city.
K: What do they have inside.
M: It is a loan company. They are loan sharks (saying that for the benefit of Evan who would be disappointed if I did not say something. He seethes over these types of companies).
K: (awe in his voice) They have sharks swimming inside.
M: No, they have unethical lending practices (again channeling Evan).
K: They have guys swimming around to get the sharks and like at Target (I thought he was referring to store)
M: (resigned, knowing this is going nowhere) Sure.
K: And we don't have things to shoot them.
M: No.
K: They need some like the wii (referring to a bow and arrow from our archery game on the wii, which he calls target and has no shooting under water at all, let alone at sharks).
M: Yup.
This is fairly typical of how things go; temple to sharks to bows and arrows. And the final thought of the day--I hate the combination of children and suckers.
Wednesday, October 26, 2011
Giant Nutshell
I know that it has been awhile since my last real post. I'd like to give Patty a shout out, because even though she moved to California almost two years ago (really has it been that long???) and I'm not a great blogger, she still checks our blog and is a faithful reader.
As an explanation, I buzzed my head because of constant pressure from Evan to shave it. Buzzing ti was as close as I wanted to come. During a drive to my friend's house, I was struck with the desire. So we did it. I even had someone at church, who I don't know, ask me if it was about fashion or about my health. Seriously??? It is really neither. Within a few weeks (like two), it had grown quite a considerable amount and now I need to decide if I want to do it again or grow it back out. Honestly, I might grow it because it is slowly inching toward freezing temps here and that will be cold on my bare head :) Any thoughts?
Honestly, I haven't taken a single picture since Kyle's third birthday (the pictures of my hair Evan took) and I obviously haven't posted. I have things that I could write and plenty of pictures of events---because lets face it even when I was posting at least once a week, I wasn't keeping up. But I have no desire to take pictures. None. I took no pictures while my mom was here. I don't even think about picking up the camera. Even less than taking pictures, I don't want to blog.
Things are rolling around here. Rolling around and down a hill.
Aiden is no longer a baby, he is a toddler. Walking everywhere, communicating in grunts and points, demanding, screaming, smart and determined. He no longer rolls with the punches. He also got his first hair cut. He brings me dress ups to put on him, is obsessed with the can opener, and brings me novels off the shelf. He can take toys up and down the stairs with him and tries to get things out of his crib. He plays with the kitchen toys even more than Kyle does and brings me plates and pots of "food."
Kyle is into the why phase of life. Why does it get dark? Why is it cold? Why is that screen red? He asks what. What is his name? What is he carrying? What are we going to do then? He makes all kinds of connections. I have a dinosaur shirt. We don't have this toy at home. That is the way to mammi's house. Daddy's school is in the mountains. He is also demanding and if I don't know the answer he responds with, "NO! NO!" and repeats the question like I'll get it then. Kyle also responds like that if I don't answer his question how he wants me to. He is a never ending source of chatter. He is causing me to lose my mind. Because if it isn't done his way at his speed when he wants it, then heaven help us. I have never said the phrase, "I don't want to ask you more than once." In my whole life. God help us. Literally.
The only relief comes each day after lunch. Quiet time. In order for Aiden to get what he needs from a nap and Kyle too. Kyle watches a "show" quietly in my bed while Aiden sleeps in his crib. Kyle will fall asleep but it takes awhile of forced inactivity in a bed and lasts just 45 minutes followed by another 20 minutes of laying there until he is no longer grumpy. But he won't do quiet time without me---"Mommy come lay with me." "Mommy, put your book down (I only like to watch his kids shows once---we watch them over and over and over and over, sometimes he even has me start them over) and snuggle with me." So we snuggle and inevitably I fall asleep before he does. But he is warm and holds my hand, I stroke his leg, and the top of our heads are tilted until they touch.
We are also in the throws of struggle. Hard core, I might not survive struggle. Where you hit your knees (at least in your mind) several times an hour. This time rivals when we didn't have a car for six months, I was sick with my gallbladder and on percoset and pregnant, and Evan was working 70 hours a week and walking across town to work. Not kidding.
Medically (which is only part of it), we got a diagnosis of eosinophilic endocolitis. Both boys. No cure and no concrete treatment plan. We can try elimination diets to see if that helps but we are going to focus on (1) maintaining growth, (2) managing pain, and (3) managing inflammation and distention of the stomach. Kyle is now on a drug to help him sleep--at three. We have tried the only two appetite stimulants out there, without success. One showed not much success, the other the side effects were too severe.
On Monday, our GI doctor informed us that he is setting us up for a consultation with a surgeon for Kyle to receive a g-tube, which is a tube inserted directly into his stomach thru his abdomen so we can feed him without food having to be eaten orally. It would be for about a year until he can learn to support his growth through his own eating. The appointment is for Friday at 11:30. I'll keep you posted, maybe. It took some research and convincing to get Evan, including several calls to other physician friends. There has also been some intense aggressive backlash from family. That makes a tough situation almost intolerable--it also breeds a quick growing, loud scream of doubt.
Evan gave me a blessing, part of it that really stuck, mentioned I need to have courage to stick firm and stand up. Honestly, I have no idea if I can do it. The place to stand is like a crumbling precipice and I feel like I've been standing for months in a blizzard. My muscles feel like they just might give from sheer exhaustion.
We did one month of gluten free on top of our dairy free. And can I just praise my friend Kirsten? My hero. She is a full time mom of kids my boys' age. She is also a full time student, as is her husband. She spends 12 hours in the library at a time. And she eats a gluten free diet. She and my other friend Sarah (who has a cute chub of a one year old, amazing photography skills, a vagabond lifestyle and a full time job) were my constant text friends to answer all my questions and lead me to good decisions. Controlling the gluten in our house was simple, although we did give up pasta for a month. It was outside--at play dates, restaurants, nursery and family dinners. Several restaurants had no idea what was in their food, or only had allergy information online not in stores---in this day and age that is ridiculous! One store had great packaged gluten free options--like cookies, crackers, pretzels and chicken nuggets (a staple for Kyle), but lacked in basics like baking supplies and alternative pastas, which I had to find at another store. Then there were our regular groceries.
We finished and after a week back on gluten, I'm fairly certain Aiden needs to be on that diet. We will be doing another two weeks of gluten free for him, which I was going to postpone until after Kyle's g-tube decisions, but after several hours of painful screaming last night with no cause in sight, that will be pushed up. We'll try him off of gluten for another two week and bring him back on. If this happens again (blow out diapers at night, frequent lose stools, yeast rashes, and fussy painful crying), we'll know for sure that Aiden needs gluten free and dairy free for good. Kyle however, is fine.
So I think I caught you up in a nutshell, although not a small nutshell :) Oh P.S. The best thing in my life is my friend, Charity, posted on pinterest a link about how to keep your house clean in 15 minutes a day. I started last week and oh, holy, hannah, hallelujah . I love it and it is working. How is it that keeping my house clean--something I've never been able to do--is the only thing I am doing well now that everything else is beyond my grasp.
As an explanation, I buzzed my head because of constant pressure from Evan to shave it. Buzzing ti was as close as I wanted to come. During a drive to my friend's house, I was struck with the desire. So we did it. I even had someone at church, who I don't know, ask me if it was about fashion or about my health. Seriously??? It is really neither. Within a few weeks (like two), it had grown quite a considerable amount and now I need to decide if I want to do it again or grow it back out. Honestly, I might grow it because it is slowly inching toward freezing temps here and that will be cold on my bare head :) Any thoughts?
Honestly, I haven't taken a single picture since Kyle's third birthday (the pictures of my hair Evan took) and I obviously haven't posted. I have things that I could write and plenty of pictures of events---because lets face it even when I was posting at least once a week, I wasn't keeping up. But I have no desire to take pictures. None. I took no pictures while my mom was here. I don't even think about picking up the camera. Even less than taking pictures, I don't want to blog.
Things are rolling around here. Rolling around and down a hill.
Aiden is no longer a baby, he is a toddler. Walking everywhere, communicating in grunts and points, demanding, screaming, smart and determined. He no longer rolls with the punches. He also got his first hair cut. He brings me dress ups to put on him, is obsessed with the can opener, and brings me novels off the shelf. He can take toys up and down the stairs with him and tries to get things out of his crib. He plays with the kitchen toys even more than Kyle does and brings me plates and pots of "food."
Kyle is into the why phase of life. Why does it get dark? Why is it cold? Why is that screen red? He asks what. What is his name? What is he carrying? What are we going to do then? He makes all kinds of connections. I have a dinosaur shirt. We don't have this toy at home. That is the way to mammi's house. Daddy's school is in the mountains. He is also demanding and if I don't know the answer he responds with, "NO! NO!" and repeats the question like I'll get it then. Kyle also responds like that if I don't answer his question how he wants me to. He is a never ending source of chatter. He is causing me to lose my mind. Because if it isn't done his way at his speed when he wants it, then heaven help us. I have never said the phrase, "I don't want to ask you more than once." In my whole life. God help us. Literally.
The only relief comes each day after lunch. Quiet time. In order for Aiden to get what he needs from a nap and Kyle too. Kyle watches a "show" quietly in my bed while Aiden sleeps in his crib. Kyle will fall asleep but it takes awhile of forced inactivity in a bed and lasts just 45 minutes followed by another 20 minutes of laying there until he is no longer grumpy. But he won't do quiet time without me---"Mommy come lay with me." "Mommy, put your book down (I only like to watch his kids shows once---we watch them over and over and over and over, sometimes he even has me start them over) and snuggle with me." So we snuggle and inevitably I fall asleep before he does. But he is warm and holds my hand, I stroke his leg, and the top of our heads are tilted until they touch.
We are also in the throws of struggle. Hard core, I might not survive struggle. Where you hit your knees (at least in your mind) several times an hour. This time rivals when we didn't have a car for six months, I was sick with my gallbladder and on percoset and pregnant, and Evan was working 70 hours a week and walking across town to work. Not kidding.
Medically (which is only part of it), we got a diagnosis of eosinophilic endocolitis. Both boys. No cure and no concrete treatment plan. We can try elimination diets to see if that helps but we are going to focus on (1) maintaining growth, (2) managing pain, and (3) managing inflammation and distention of the stomach. Kyle is now on a drug to help him sleep--at three. We have tried the only two appetite stimulants out there, without success. One showed not much success, the other the side effects were too severe.
On Monday, our GI doctor informed us that he is setting us up for a consultation with a surgeon for Kyle to receive a g-tube, which is a tube inserted directly into his stomach thru his abdomen so we can feed him without food having to be eaten orally. It would be for about a year until he can learn to support his growth through his own eating. The appointment is for Friday at 11:30. I'll keep you posted, maybe. It took some research and convincing to get Evan, including several calls to other physician friends. There has also been some intense aggressive backlash from family. That makes a tough situation almost intolerable--it also breeds a quick growing, loud scream of doubt.
Evan gave me a blessing, part of it that really stuck, mentioned I need to have courage to stick firm and stand up. Honestly, I have no idea if I can do it. The place to stand is like a crumbling precipice and I feel like I've been standing for months in a blizzard. My muscles feel like they just might give from sheer exhaustion.
We did one month of gluten free on top of our dairy free. And can I just praise my friend Kirsten? My hero. She is a full time mom of kids my boys' age. She is also a full time student, as is her husband. She spends 12 hours in the library at a time. And she eats a gluten free diet. She and my other friend Sarah (who has a cute chub of a one year old, amazing photography skills, a vagabond lifestyle and a full time job) were my constant text friends to answer all my questions and lead me to good decisions. Controlling the gluten in our house was simple, although we did give up pasta for a month. It was outside--at play dates, restaurants, nursery and family dinners. Several restaurants had no idea what was in their food, or only had allergy information online not in stores---in this day and age that is ridiculous! One store had great packaged gluten free options--like cookies, crackers, pretzels and chicken nuggets (a staple for Kyle), but lacked in basics like baking supplies and alternative pastas, which I had to find at another store. Then there were our regular groceries.
We finished and after a week back on gluten, I'm fairly certain Aiden needs to be on that diet. We will be doing another two weeks of gluten free for him, which I was going to postpone until after Kyle's g-tube decisions, but after several hours of painful screaming last night with no cause in sight, that will be pushed up. We'll try him off of gluten for another two week and bring him back on. If this happens again (blow out diapers at night, frequent lose stools, yeast rashes, and fussy painful crying), we'll know for sure that Aiden needs gluten free and dairy free for good. Kyle however, is fine.
So I think I caught you up in a nutshell, although not a small nutshell :) Oh P.S. The best thing in my life is my friend, Charity, posted on pinterest a link about how to keep your house clean in 15 minutes a day. I started last week and oh, holy, hannah, hallelujah . I love it and it is working. How is it that keeping my house clean--something I've never been able to do--is the only thing I am doing well now that everything else is beyond my grasp.
Tuesday, September 27, 2011
Friday, September 2, 2011
Surgery Day
04: 33 am: get up, showered and dressed, make sure everything is ready for Evan for the day
05: 14 am: Kyle wakes up and watches tv and begs for food.
05: 38 am: wake up Aiden, change diapers, give blessings, get in the car.
05:56 am: pick up Mammi.
05: 14 am: Kyle wakes up and watches tv and begs for food.
05: 38 am: wake up Aiden, change diapers, give blessings, get in the car.
05:56 am: pick up Mammi.
06: 22 am: walk into hospital. Wait to register.
06: 43 am: go upstairs to surgical floor.
06: 55 am: change into hospital garb, meet several nurses, do physical exam, give Aiden medicine, sign my life away while Kyle watches Yo Gabba Gabba on Mammi's iPhone.
07:34 am: walk with anesthesiologist to the red line in the floor, hand over Aiden to go back to surgery.
07: 41 am: say hi to Dr. Mizell and let him know that the one day I couldn't get the kids to poop, was the previous day Clean Out Day even with miralax. Told him we did an enema on Kyle (during which Kyle was laughing) and a glycerin suppository on Aiden the night before. Kyle plays in a coupe car--such cool toys in the waiting room.
07: 45 am: child life came out and brought Kyle a doll to use some medical supplies on.
07:55 am: Kyle was given a drug to make him a little loopy and hopefully sleepy so he wouldn't be so upset at the seperation.
08:10 am: Kyle got silly and was just laughing for no reason, then he began to shove me and laugh for no reason. It was hysterical.
08: 22 am: doctor came and talked to me about Aiden. There was irritation every where he looked. The pictures look bad. We will need to wait for patho to get back to us with the results of the samples. He also found a foreign object that looks like a bead??? What the heck???
08:25 am: Kyle was taken back while I was talking to the doctor. Then Mammi headed over to recovery to be with Aiden.
08: 35 am: went to be with Aiden in post op. Realized my old visiting teachee is our nurse. He almost ripped the slushie out of my hands trying desperately to put his whole mouth in the cup.
09: 04 am: Aiden is discharged and we wait for Kyle. Aiden is super sleepy.
09:18 am: Kyle came out of the OR into recovery. He threw up, stirred, was moved to post op
09:33 am: I spoke with the doctor. All of Kyle looks pretty normal. The stomach sphincter lacks muscle tone just like Aiden's. We'll need to wait for the biopsies to see if any of his eosinophil levels have changed (the whole reason to do it) or his marsh rating (relates to celiac disease). But we have no other procedures we can do for him so from now on it will be controlling pain, appetite and bloating with medication.
10:12 am: Kyle woke up, and so did Aiden from his nap on Mammi. We had 1 1/2 purple slushies and some graham crackers. Aiden played in Kyle's crib.
10:45 am: loaded kids in the car and left the hospital
11:23 am: walked into our house and ate lunch
11:47 am: went out to the swings to swing and crawl around
12:10 pm: Aiden laid down for a nap and Kyle watched a movie
Since then, we've just been laying low. Both have had several bloody diapers (totally normal--he took LOTS of tissue samples). We've eaten a lot and as of right now, Aiden has been sleeping for 3 1/2 hours and Kyle has slept none. But they are still in their pajamas :)
11:23 am: walked into our house and ate lunch
11:47 am: went out to the swings to swing and crawl around
12:10 pm: Aiden laid down for a nap and Kyle watched a movie
Since then, we've just been laying low. Both have had several bloody diapers (totally normal--he took LOTS of tissue samples). We've eaten a lot and as of right now, Aiden has been sleeping for 3 1/2 hours and Kyle has slept none. But they are still in their pajamas :)
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