Noah, Noah, Noah
Well, I took a tiny hiatus from updating my blog. In all honesty, I should not be updating it in the frame of mind I'm in, but I'm sure if you've been reading since the beginning then you know how my mood swings fluctuate all the time. But, hey, count yourself lucky. My husband's had to deal with it since 1994. :-)
I thought I'd go ahead and post right now, though, because I'm up and the house is quiet - which translates as, "Eli is still asleep".
So, anyway, things aren't that bad. I'm just tired and am postive that I'm coming down with strep throat for the FIFTH time this year. What's with that? Which means Noah might get it - and we never know if he has it. Just on the off shot that he might have it, we had his throat cultured a few months ago and it came back positive. He had no symptoms - didn't complain. But he had it. So, I'm just praying this huge lump in my throat is sinus and will just go away.
It's also just been a really long week. This whole diet thing is getting me way down. I've decided for right now to just take out potatoes, rice, tomatoes, and peanut butter. Just doing that is going to be a huge struggle because that's his staple diet. Plus, that takes out all his snacky, convenient foods (french fries, chips, pizza, PB&J sandwiches). I still have to develop a rotation diet b/c Noah develops a food sensitivity to anything that he eats for more than two weeks. It's still in the "planning stage", though. Basically, though, Noah will have to have certain foods only every 4 days. For example: Mondays might be beef, carrots, broccoli, pear, pear juice and millet. Tuesdays might be turkey, corn, squash, apple, apple juice. Wednesdays would be something else. Thursday would be something else. Then, Friday would be beef and millet day again. But on that day, he could have anything made out of beef that's "safe": organic beef hot dogs, beef rolled in millet flour, millet bread, millet cereal, cooked pears, pear juice, carrots, carrot smoothies, ect. The concept sounds easy, but, of course, he won't eat ANY of this... which is why I'm in such a state of panic. He literally only eats potatoes, rice, tomatoes, and peanut butter.... which is why he's developed an intolerance to them. For some reason, Noah's body just develops a reaction to ANYTHING that he's repeatedly exposed to. We even have to stop using olive oil and rotate oils every four days: corn oil, macademia, safflower, canola, etc. I haven't quite researched that yet, but assume corn oil will on corn day, macademia will be on macademia nut day, almond oil could be on almond day... blah blah blah. Oooooh, don't I live an exciting life? :-) Anyway, though, a light bulb went off in my head yesterday and now I realize why Noah did so poorly when he was a baby. When we took him off all soy products when he was 19 months old, he slept through the night for the first time in his life. His allergy tests did not show that he had an allergy to soy. But we noticed a huge difference - and he'd been drinking soy formula and soy milk several times a day since he was 11 months old. The same with dairy. When we took all casein out of his diet, his "fog" lifted and he seemed to wake up just a little bit. Again, his allergy results showed no problem with dairy. But we saw a difference. I now realize that even back then Noah's body was fighting the foods that he ate the most of. I haven't quite figured out the scientific gist of it all, but I know he has low IgA and he has ZERO beneficial bacteria in his gut (we have tests that prove this and we know it's from all the antibiotics he was on as a baby). I read that if you have low IgA in the gut then your body can't fight things that it perceives as abnormal. And that these foods can permeate the intestines and exit the skin - which could explain Noah's eczema and why it gets better when he's sick and doesn't eat for a week. I also read that it puts your body in a constant state of inflammation. A friend of mine has a son with autism and her doctor put him on a tiny dose of prednisone and she saw improvements with his autistic behavior. Noah is too sensitive to meds to ever do that, but it's interesting that reducing inflammation would help. So, essentially, that's what we're trying to do by putting him on a rotation diet. If we can keep his body from being in a constant state of "attack" or inflammation, then hopefully his eczema will go away - and maybe his body can turn all that wasted energy into healing itself.
So I am slightly aware that I'm probably going to be branded as the "Cedar Creek Crazy", but it all makes sense in that little head of mine. And to just illustrate the effects of diet..... Noah had pizza last night. I know, I know. Tomatoes are in the Big Top Four, but we spent the weekend with my parents and I was not prepared food-wise. And sure enough, he's been up shrieking half the night and he's scratched his skin into a bloody pulp. I picked him up over the baby gate and felt something wet on my arms. Blood. With bits of skin mixed in. Just from eating half a slice of pizza with canadian bacon on it. So that's why I'm panicking - because I know how important it is and I am the most unorganized in the entire world.
Enough of that.
On to the good news.
Noah started drinking out of a draw a week ago! That is HUGE. Seriously, I can't even begin to tell you how huge that is. Either he was never able to suck before or the whole concept never clicked with him, but I tried again last week and he did it instantly. Like it was second nature. He still prefers his sippy cup over the straw, but I'm so hoping that we can wean the sippy cup away and get him a sports bottle or something. It's much more socially appropriate, which is no big deal for him but is for me. It's silly, I know, but I can't help it. Anyway, it'll take some time, but I'm hoping in the next month or so that those sippies will be history. Plus, this means that the muscles in his mouth are getting stronger, so maybe he'll be able to start forming some words. That would be so awesome.
We're also headed back to Austin on Friday. I cannot wait. He's going to meet with Soma again at HALO and she's going to work with him some more on trying to get him to communicate by making choices. I've tried to do it at home and it's just not the same. He soooooo does not want to work with me, which is understandable because I've never required anything of him. I've literally done everything for him for 5 years. But Soma's going to help me learn how to work with Noah, so I'm really excited about that. I think the biggest changes will come when we go to camp at the end of October. I cannot wait for that.
I have lots more to post later - including an incredible story about Noah and his stuffed animal Monkey. It's a long one, though, so I'l put it in a separate post. Also, Dale, thanks for the comment you left on my previous post. That was so sweet! I'm going to do a separate post about the things that we feel have helped Noah and what things I wish the school had done with him or let us know about. I'll try to get that done this week.
Hope you all have a good week!
Noah's Mom
I thought I'd go ahead and post right now, though, because I'm up and the house is quiet - which translates as, "Eli is still asleep".
So, anyway, things aren't that bad. I'm just tired and am postive that I'm coming down with strep throat for the FIFTH time this year. What's with that? Which means Noah might get it - and we never know if he has it. Just on the off shot that he might have it, we had his throat cultured a few months ago and it came back positive. He had no symptoms - didn't complain. But he had it. So, I'm just praying this huge lump in my throat is sinus and will just go away.
It's also just been a really long week. This whole diet thing is getting me way down. I've decided for right now to just take out potatoes, rice, tomatoes, and peanut butter. Just doing that is going to be a huge struggle because that's his staple diet. Plus, that takes out all his snacky, convenient foods (french fries, chips, pizza, PB&J sandwiches). I still have to develop a rotation diet b/c Noah develops a food sensitivity to anything that he eats for more than two weeks. It's still in the "planning stage", though. Basically, though, Noah will have to have certain foods only every 4 days. For example: Mondays might be beef, carrots, broccoli, pear, pear juice and millet. Tuesdays might be turkey, corn, squash, apple, apple juice. Wednesdays would be something else. Thursday would be something else. Then, Friday would be beef and millet day again. But on that day, he could have anything made out of beef that's "safe": organic beef hot dogs, beef rolled in millet flour, millet bread, millet cereal, cooked pears, pear juice, carrots, carrot smoothies, ect. The concept sounds easy, but, of course, he won't eat ANY of this... which is why I'm in such a state of panic. He literally only eats potatoes, rice, tomatoes, and peanut butter.... which is why he's developed an intolerance to them. For some reason, Noah's body just develops a reaction to ANYTHING that he's repeatedly exposed to. We even have to stop using olive oil and rotate oils every four days: corn oil, macademia, safflower, canola, etc. I haven't quite researched that yet, but assume corn oil will on corn day, macademia will be on macademia nut day, almond oil could be on almond day... blah blah blah. Oooooh, don't I live an exciting life? :-) Anyway, though, a light bulb went off in my head yesterday and now I realize why Noah did so poorly when he was a baby. When we took him off all soy products when he was 19 months old, he slept through the night for the first time in his life. His allergy tests did not show that he had an allergy to soy. But we noticed a huge difference - and he'd been drinking soy formula and soy milk several times a day since he was 11 months old. The same with dairy. When we took all casein out of his diet, his "fog" lifted and he seemed to wake up just a little bit. Again, his allergy results showed no problem with dairy. But we saw a difference. I now realize that even back then Noah's body was fighting the foods that he ate the most of. I haven't quite figured out the scientific gist of it all, but I know he has low IgA and he has ZERO beneficial bacteria in his gut (we have tests that prove this and we know it's from all the antibiotics he was on as a baby). I read that if you have low IgA in the gut then your body can't fight things that it perceives as abnormal. And that these foods can permeate the intestines and exit the skin - which could explain Noah's eczema and why it gets better when he's sick and doesn't eat for a week. I also read that it puts your body in a constant state of inflammation. A friend of mine has a son with autism and her doctor put him on a tiny dose of prednisone and she saw improvements with his autistic behavior. Noah is too sensitive to meds to ever do that, but it's interesting that reducing inflammation would help. So, essentially, that's what we're trying to do by putting him on a rotation diet. If we can keep his body from being in a constant state of "attack" or inflammation, then hopefully his eczema will go away - and maybe his body can turn all that wasted energy into healing itself.
So I am slightly aware that I'm probably going to be branded as the "Cedar Creek Crazy", but it all makes sense in that little head of mine. And to just illustrate the effects of diet..... Noah had pizza last night. I know, I know. Tomatoes are in the Big Top Four, but we spent the weekend with my parents and I was not prepared food-wise. And sure enough, he's been up shrieking half the night and he's scratched his skin into a bloody pulp. I picked him up over the baby gate and felt something wet on my arms. Blood. With bits of skin mixed in. Just from eating half a slice of pizza with canadian bacon on it. So that's why I'm panicking - because I know how important it is and I am the most unorganized in the entire world.
Enough of that.
On to the good news.
Noah started drinking out of a draw a week ago! That is HUGE. Seriously, I can't even begin to tell you how huge that is. Either he was never able to suck before or the whole concept never clicked with him, but I tried again last week and he did it instantly. Like it was second nature. He still prefers his sippy cup over the straw, but I'm so hoping that we can wean the sippy cup away and get him a sports bottle or something. It's much more socially appropriate, which is no big deal for him but is for me. It's silly, I know, but I can't help it. Anyway, it'll take some time, but I'm hoping in the next month or so that those sippies will be history. Plus, this means that the muscles in his mouth are getting stronger, so maybe he'll be able to start forming some words. That would be so awesome.
We're also headed back to Austin on Friday. I cannot wait. He's going to meet with Soma again at HALO and she's going to work with him some more on trying to get him to communicate by making choices. I've tried to do it at home and it's just not the same. He soooooo does not want to work with me, which is understandable because I've never required anything of him. I've literally done everything for him for 5 years. But Soma's going to help me learn how to work with Noah, so I'm really excited about that. I think the biggest changes will come when we go to camp at the end of October. I cannot wait for that.
I have lots more to post later - including an incredible story about Noah and his stuffed animal Monkey. It's a long one, though, so I'l put it in a separate post. Also, Dale, thanks for the comment you left on my previous post. That was so sweet! I'm going to do a separate post about the things that we feel have helped Noah and what things I wish the school had done with him or let us know about. I'll try to get that done this week.
Hope you all have a good week!
Noah's Mom
Comments
We missed you guys on Sunday but are praying for your throat. Also looking forward to seeing Simeon again soon. I am especially praying for Noah and that the trip to HALO will be incredibly productive.
Sim thinks they'll call off the service emergency sometime this week. We're just waiting to hear.
The boys and I will be at Life Group tonight - so we'll see you then! Leslie
We noticed your absence Sun. and are glad to hear that you are well and had gone out of town to be with family. We just got back into town ourselves.
Laurel and the girls talk about your boys all the time and Laurel pick out a picture to give to Noah. I guess that we will see you tonight.
I am praying that God will give you the ability to organize this new diet. I totally understand the unorganized thing...but you have a good excuse (two...lol). Be encouraged. We are praying for you!
Glad to read that your throat is better! I'm praying for you and the boys this morning. Hope to see you again soon :)
Julie
Just wanted to say HI and let you know I am praying for you and your kids. Hope your trip will be helpful for you and Noah. Don't worry about the sippy cups!