The-Courier-recoveringnoah

Well, I know this isn't the main purpose of my blog, but I know that a lot of people from church check in now and then to see how things are going, so I figured I'd post on here why we're not at church today. Our air conditioning is out, so we're at my parents' house.. .again. I think we spend more time here than we do at home. Fortunately, they've bought land in Mabank, so if they ever sell their house (major prayers needed in that area) then they'll only be up the road. Right now, though, they're 1 1/2 hours away. Anyway, Sim thinks the house is still under warranty or something like that but he's still working all the overtime, so hasn't had a chance to check. And, of course, reading warranty paperwork is the same as reading Greek to me. Funny how I can make it through articles on neuroanatomy and gene deletions, but anything from State Farm causes my eyes to glaze over. The important thing is that it should be covered and hopefully we'll be able to get someone out tomorrow or the next day. And we should be at Life Groups on Tuesday.

I know I've been MIA this past week and still have to post on how Noah did in Austin on Friday. He did great! He was adding up to 10, gave the words to "Old MacDonald", talked about rain, and then had a neat little "dialogue" about why he was pitching a fit. Basically, he said that he knows he's there to work, but he's bored so that's why he's pitching a fit. It was so neat to watch. He's progressed from having to answer questions that are held up in the air. Now, he can answer questions from a choice of two written choices laying on a desk in front of him. We're also working on him pointing to the correct answer with a pencil (to get him used to holding a pencil), but his motor skills aren't quite up to it just yet. Right now, he's just slapping his hand down on the right answer and picking it up. It's a great step forward though. We're going to have lots and lots and lots of these little baby steps for the next few years. The important thing is that these baby steps add up - and that's what is going to make a difference. I'm going to practice with him for the next two months and then we go back for one day in September. (It's only an hour therapy time, but takes all day because of the distance). Then we go for 4 straight days (camp) in October and one more day in November. THEN.... Nandini comes home and things will be upside down and haywire for awhile, but we hope to resume our trips to Austin in February (maybe even the end of January). We'll have to see how it goes.

Right now, our biggest decision is regarding school. I LOVE his teacher. She is just so awesome and amazing, but it all goes downhill after the next year - when he moves to LifeSkills. And Noah has progressed soooooooo much this summer. He's doing really well and I think he enjoys being able to slow down and not be rushed all the time. Anyway, I've just been spending this last week praying for the right decision. I'm not opposed to school and I'm not opposed to homeschool. I just want God to show me what is right for Noah and I'll accept either one. It's the stress of making the decision, however, that is about to kill me - because somehow I'm not able to hear what God wants us to do. In the meantime, the stress keeps building. It must sound crazy to those who've never had to make the decision, but for those of you who've been in my shoes, I'm sure you know exactly what I'm talking about. And, seriously, I've never put so much thought and prayer into something in my whole life. Honestly, I don't even think I gave this much thought when I decided to get married. I mean, really.....a guy that I'd known for one and a half years (with a year of that being separated by about 10,000 miles) asks me to marry him and spend the REST of my life with him - and I say yes in less than a nanosecond. But when faced with the decision to put my kid in public school or teach him myself and I spend hours in prayer, and hours scouring the internet, lurking on chat groups, browsing through bookstores, and comforting myself with chocolate. And did I mention the hours of prayer?

Anyway, so that's what we've been up to this week. But hopefully things will get back to normal (with the air conditioning) and we'll reach a decision about school.

Hope everyone has a good week!

Noah's Mom

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

If you've wondered why I haven't posted this week, it's because I've had a stimulating last few days learning all about the structure, makeup, and effects of things with fancy names, such as Phenylethylamine, Tyramine, Solanine, and Sodium Metabisulfite - just to name a few.

We got Noah's LEAP results on Monday and it shows all the different foods and chemicals that he is sensitive to.... and I am far too overwhelmed to fully explain it. But I'll give it a try.

When the doctor gave us the results, we were actually pleased. He only shows a reaction to a few foods:

Quinoa
Mango
Banana
Shrimp
Crab
Cinnamon
Ginger
Lentils

and a few chemicals

Potassium Nitrite
Salicyclic Acid
Solanine
Tyramine
FD&C Blue #2
Saccharine
Sodium Metabisulfite
Sodium Sulfite
Phenylethylamine

We were really surprised because we were sure that tomatoes, potatoes and rice would be on there. Those three really seem to push him over the edge. But they weren't. Except for bananas and the spices, we really didn't need to make a big adjustment to his diet. Then... I got on Google and everything changed.

Apparantely, sulfites are in EVERYTHING. Now, we know why he has such a reaction to french fries and potato chips (his favorite food). The FDA banned the use of sulfites on vegetables back in the 80's, but the potato industry took the FDA to court and said that without sulfites, the potato industry would be in ruin. You see, sulfites are what keeps the potatoes from going brown (it's also what's used in bottled lemon and lime juice to keep it from browning, too - and it's used on all non-organic grapes to keep them from growing mold). Anyway, potatoes are still soaked in a sulfite solution.... so all processed potatoes (french fries, hashbrowns, ect AND potato starch and potato flour) have been treated. Bingo. There's our answer.

I'm sure, somewhere, Ronald McDonald is gently weeping over losing his most loyal customers.

Sulfites also used in corn. Turns out that corn is soaked in a sulfite solution for 2 days after its picked. So, corn chips. corn starch, corn syrup (which is in everything) has sulfite residue. Oh, and soy infant formula - which Noah was on until he was 18 months old - is full of sulfites. Hmmmm... let's not give the baby cow's milk before he turns 1, but go ahead and give him a daily scoop of sulfites. Something about that is just plain wrong.

Anyway, so, it might not do much to 99% of the world, but if you're in that 1% - like Noah (who seems to get the 1% of a lot of things), then it's trouble. There's a wonderful website that explains it all: http://members.aol.com/nosulfites/ . After several days of researching, I stumbled upon it and it was a lifesaver.

So... .then we turn to nitrites. Noah's other favorite foods are cured meats. He loves his pepperoni, his bacon, his hot dogs. It it used to oink, then he loves it. Well, they're loaded with nitrites - which is a preservative. Fortunately, Walmart know carries a line of nitrite free hotdogs and bacon, but we are treading slowly with the bacon. It doesn't have nitrites except for what occurs naturally in the added "Natural Flavoring"... and Noah still seems to react to it. It's so funny because we use to be a Vegetarian/Vegan family until Noah came along and decided that the best thing in the world was pork. And, yes, the first day that our PETA family sat down around our table and ate a pork chop.... we looked outside and pigs actually were flying.

Basically, to make a very long story short, we know now why Noah can't handle potatoes (which also contain solaine), pork, tomatoes (solanine) and chocolate (phenylethylamine). Which leads us to good news and bad news.

Let's do the bad news first. Here it goes. I'm basically going to have to became a 19th century woman and make everything from scratch. Yes, I can hear howls of laughter coming from those who are close to me. It's not funny. My kids may actually starve. I am a product of the modern world. I am a 21st century woman. Chik-Fil-A is my best friend.

So, now, I somehow have to learn to make potato starch-free, corn-syrup free, everything else free bread and waffles and muffins. You'll see me outside grinding peanuts with a mortar and pestle making my own fresh peanut butter. My goodness, I even have to make our own cheese because Noah is allergic to everything that's been aged. (Okay, I know there's some humor to be found in that statement somewhere - but I'm not going to attempt it). The point is, I have no idea what to do.

Let's get on to the good news. The good news is that Noah will never be an alcoholic because he's allergic to wine, beer, and hops. And he'll most likely never battle with obsesity, heart disease, high blood pressure, or liver disease. So, there are some positives.... unless he falls into the 1% percent - which we're not eeeeeeeeven going to think about.

So, if you see me outside churning butter or skinning a pig, you know what's going on.

Have a good weekend.

Noah's Mom