Monday, October 17, 2011

So it appears my bathroom has fleas.

Not what I expected!  YUCK!!  Weird thing is, the dog doesn't appear to have fleas.  My couch doesn't have fleas.  Both her beds, upstairs and down, don't have fleas. The rest of my house doesn't have fleas. But my upstairs bathroom where she rarely resides?  I caught and flushed 2 fleas this morning!  To be fair, in early September Lola was outside in a known flea friendly area and I hadn't treated her before or after. So the plan for today: run to Walmart and get a spray bottle.  Then I am making a natural flea repellant for the dog and the house.  This is supposed to work on ticks and mosquitoes as well.  I sure hope it works on those horrible little black biting bugs that are out enmasse right now.

Essential oils to use in a recipe I found:
Cedar - I have cypress, that should be close enough

I think I'll add some tea tree, oregano, geranium, and rosemary.  Depending on the scent, I may add some sweet orange, but the lemongrass and lavender should react nicely with the oregano essential oil.  That one, while highly useful, in my opinion, stinks!

I gotta say though, this is a benefit of raw feeding.  With all our other dogs, they were all on kibble and every one of them had dry flaky skin and could definitely use a bath at least once per month, preferably more often.  They would get that greasy buildup and dander - but Lola?  Not since switching to raw feeding.  Her skin is beautiful, no greasy buildup, and even better - she smells rather pleasant and not dog-like! This is probably why I found only 2 fleas and not 1,000. :)

Sunday, October 9, 2011

Evolution or De-Evolution?

More from my "I'm wide awake in the middle of the night" thoughts . . . Is the human race continuing to evolve, or are we de-evolving?

With all the advancements in modern medicine (hey, I don't hate it ALL) look how many people are able to lead happy healthy productive lives and produce children of their own . . . people that without medical intervention would never have survived to procreate.  Since we value people so highly, most people think this is a wonderful thing!  And it is. :)  But thinking about it strictly from a Survival of the Fittest approach . . . what kind of genetics have those people passed on to the next generations?  Some genetics don't seem to matter too much while others do. 

Look at all the kids born in today's world that become autistic, have Down Syndrome, ADD, ADHD, or any number of other issues that I can't remember the acronyms for.  Looking back at the last 100 years or even further, we didn't use to have THAT many of these kids with issues.  So . . .what's causing this? Is it strictly genetic, strictly environmental, or both?  Well, with the discovery of autism related genes and we know that Down's is the extra 21st chromosome (that most agree now happens at conception but still don't know WHY it happens) . . . let's go genetic. 

But, seeing how going back to the basics of GFCF, Specific Carbhydrate, and nightshade free diets, along with the help of therapies and supplements, has helped so many kids recover significantly if not fully recover . . . it has to be environmental too since they get worse on today's Standard American Diet that doctors so highly recommend.

So how did we get here? Did we evolve to have those genetic predispositions by way of helping those to survive that under "Survival of the Fittest" would otherwise not have survived?  Is it that the older generations adapted to the new processed foods, but it changed their genetics giving rise to these new genetics? And can you really call it "evolution" thinking it means moving forward when we have to go back to basics to heal our kids . . . should it be called de-evolution because we need simpler, unprocessed foods?

Yeah, this is the kind of thing I think about when I'm wide awake at night . . .

Saturday, October 8, 2011

Serious stuff for the day

I was reading a blog interview with the creator of Crappy Pictures (which are totally hilarious, by the way!).  She talked about seeing that "perfect mom" in the grocery store who is always put together; her kids are spotless and well behaved.  Huh.  This just made me think a little since Kaiden is getting much more mobile and is very store-shelf grabby.  Right now I think he's fun to shop with . . . although I'm sure that's going to change and soon I'll be begging people to babysit just so I can spend a few peaceul moments by myself at the grocery store!
Sometimes I feel like I try to project that Perfect Mom image.  When I get dressed for the day, I try to look "put together", I like it and it makes me feel like I can accomplish more . . . I don't know why, but everyone likes to look good, right?  So when I think Kaiden's going to be messy, I don my apron to save my clothes - which really is just because I don't care if the apron gets stained, but I don't want to have to do special laundry for a stained shirt.  I'm lazy like that.  And my apron is pretty, so of course I like wearing it.  I do make sure Kaiden is clean before we head out the door anyway.  Or at least in a clean diaper with a clean face.  And Kaiden is fairly well-behaved in the stores . . . as long as I keep the cart moving. 

But this isn't my point.

My point is, back when Kaiden was having seizures and wasn't doing much of anything at all . . . it was easy to look like that Perfect Mom.  But little did anyone that saw us know how frustrating life with a special needs child can be.  While that was a really rough time, I am thankful for it since it makes me REALLY appreciate how Kaiden is now.

So, the next time you see that Perfect Mom and think she's got it all and you sometimes wish you had that life . . . remember that things aren't always what they seem.

Wednesday, September 14, 2011

Sept already?

I know, I know, I really need to update more often.  Today is Sept 14th and on the news they're talking possibly a killing frost tonight!  Early winter???  Kaiden got to sleep in his zip up fleece pj's with feet last night.  They still fit . . . for now . . . good thing I have the next size up stored away.

The self feeding is going well.  This week marks 5 weeks into it. The refusal is totally gone, so now we're just focusing on improving his skills.  He will now bring a loaded spoon to his mouth and eat no problem all by himself, but occasionally flips the spoon like any toddler.  We're still working on getting him to load the spoon; he doesn't dip the spoon far enough into the food.

For those out there that think working with crystals (aka rocks) is total bunk, let me tell you it isn't!  The weekend before last we spent down in Missouri with friends and 3 of us did some energy work on Kaiden, focusing on his arms.  Part of the self feeding issue was that he would not move his upper right arm - not that he couldn't, but wouldn't.  I had to pull his arm away from his body.  I didn't tell my friends about the upper arm thing; and both of them once we were done mentioned their upper right arms hurt.  The next day, Kaiden's upper arm movement was free.  Last night since the moon was still nice and full (yeah, yeah, I hear you, it's all crap . . . really, no it isn't.  Unless you've had personal experience with it please don't denounce it. I could go into detail about all the amazing things that happened during our energy session, but that's for another time/place.) I recharged the crystals and did more energy work, this time focusing on his fingers to help improve his fine motor skills. 

Part of my theory with Kaiden and the energy work - his therapists have introduced us to the Masgutova Method, which has to do with reflexes.  The theory there is that preemies (regardless of genetic condition) don't get that scrunched up time in the womb and because of that, have issues with movement and motor skills.  There's a lot more to the Masgutova Method but this is the part that applies here; Kaiden's body movements have been, well, not quite right.  We've been working with this method and seen improvements so it stands to reason as to why the energy work has been successful as well.

That's it for  now; today is a super busy day!

Friday, August 12, 2011


oh yeah, I almost forgot - and how could I seeing as this has consumed us this week!

Monday Kaiden threw the worst all-day tantrum, ever.  All because I'd held his spoon in my left hand instead of my right, in hopes that he would begin to immitate me that way (mirror image) since I think he's right handed. 

So . . . after all that drama out of a 2 yr old where he clearly let me know he could, he just doesn't WANT to self feed. . . I'd had enough and decided he WILL begin self feeding, NOW. I've tried every method I could think of and nothing has worked; now I get to out-stubborn him.  I strongarmed him, and forced hand-over-hand feeding.  I had to pull his little arm away from his side, wrap his little fingers around the spoon, bend his little elbow, and force the spoon to his mouth.  Then get him to open his mouth and accept the food. And lots and lots of praise for anything that went right! I've been documenting his progress with pictures on Facebook.  Yesterday was the first day that didn't involve screaming and tears but we still had plenty of "mad face" and whining; today at lunch was the first meal that didn't involve screaming/tears/mad face/whining!  And we even had cooperation!  I only had to prompt him to pick up the spoon about 25% of the time. 

I imagine I'll be doing hand over hand guiding the spoon to his mouth for awhile until his aim is reliable but I'm okay with that.  We're making progress!

Clinoptilolite Zeolite, anyone?

Really, I was only looking for the ingredient list to Rockin' Green's new "ammonia bouncer" stuff, as we are currently experiencing some cloth diaper ammonia issues thanks to a laundring mistake I made in June.  Since no one else online can find the list, they must not list it on the package. I don't have a package, and I'm not going to order one just to find out - so I did my best looking at pictures of the package online.

** I get proprietary information and all, but is it fair to the consumer to list your product as all natural if you won't disclose the ingredients?  **

ANYWAY . . . since it didn't list what they use, I looked up "natural ammonia remover" and came up with clinoptilolite zeolite, which forms (over 50,000 years) when volcanic stuff meets seawater.  And then I read about its uses as a garden aid, dietary supplement for livestock, even dietary supplement for humans.  And it's been touted as a cure for everything (really, what natural product hasn't, these days!!) and says on many websites that it is used in the treatment of autism and down syndrome.  It doesn't say anything about clinical trials, just a few peoples' online testimony.  It's also sold as cat litter (not the clumping kind).  Oh, and don't forget, a cure for cancer.  (But don't inhale it or you'll likely end up with mesothelioma.)

What it does is adsorb (not absorb) ammonia (among many other things) and transport it out of the body.  With regard to cat litter, it's supposed to cut down the odor.  Alright, so since this stuff has so many widespread uses, I thought I'd try it.  If nothing else, it should make for great garden fertilizer!

I purchased a 25lb "garden aid" bag off Amazon (since nobody here in town carries it) for under $9.  Shipping was expensive due to the weight, but still cheaper than buying the exact same single ingredient sold as a dietary supplement for 4x the price, yet less than 1/25th the size.  Nice, right? 

So, I'll try adding it to the water when washing diapers.  Hopefully it will take care of the ammonia issue there.  I can sprinkle some out in Lola's outdoor area.  Should keep down what little stink we do have out there (although raw feeding has gone a long way to cutting down the stink!).  I'll probably even add some to the garden this fall as fertilizer.

And on to Kaiden . . . I'll give it a try myself first to see if I notice any difference - but in regards to T21, ammonia is supposed to accumulate in the brain thanks to the overabundance of glutamate from the extra chromosome.  And clinoptilolite zeolite is supposed to adsorb ammonia and transport it out of the body.  We'll see what happens.  If nothing else, it certainly can't hurt Kaiden unless he sticks his nose in the bag and inhales, repeatedly.

Sunday, August 7, 2011


This article recently came out:

"Memantine works, Costa hypothesizes, not by boosting the growth of brain cells but by normalizing how existing cells use the neurotransmitter glutamate. Because people with Down syndrome have three copies of all or most of the genes on Chromosome 21 instead of just two, they have about 50 percent more of any proteins encoded in that chromosome. One result, Costa has shown, is that the NMDA receptors of Ts65Dn mice are “hyperactive” — they overreact to stimuli. By responding to too many things, they learn too little; the signal is lost amid the noise. But giving memantine to quiet the noisy NMDA receptors, Costa has found, makes the brain cells react almost normally."

Since removing nightshades from Kaiden's diet stopped his seizures and had the side effect (if you can call a side effect!) of waking him up - this article has me fascinated.  There are nicotinic receptors in the brain that work with the acetylcholine and the glutamate and I've come across some interesting studies and information about how that all works together.  Nobody has applied it to T21, I'm sure . . . or at least if they have it certainly hasn't hit the internet.

Just based on my preliminary readings I think I was wrong about assuming nightshades dampened Kaiden's nervous system, not allowing enough sensory input - this has me now thinking that it allowed way too much sensory input and he couldn't filter it with the extra glutamate.  Less (or no) nightshades = less sensory input = less "noise" = sensory input he could handle.

 In case you are wondering WTF I am talking about, nicotine is a glycoalkaloid found in nightshade foods. (Yes, tobacco is a nightshade.  No smoking cigarettes for you kiddo, ever.  Don't even try it.)  The glycoalkaloid solanine is blamed for arthritis pain, among other things.  I wondered why Kaiden couldn't have nightshades but blueberries, which also contain solanine, and can affect those with arthritis pain - didn't affect his seizures at all.  Blueberries don't appear to contain nicotine.  And blueberries are touted as a brain food and sold as supplements for Alzheimer's patients.  There are studies out there for both solanine and nicotine as individual alkaloids being useful in treating Alzheimers.  But, nightshade foods contain them BOTH, not just one or the other. There are no studies that I can find that uses them both, together, in regards to Alzheimer's or Down Syndrome.  My current theory is that the two alkaloids work synergystically together, meaning that because they are ingested TOGETHER, they have a different outcome than if they were ingested SINGLY.

I have a ton of reading to sift thru to attempt in figuring this out.  But at least I have another avenue to look at because I was pretty much stalled where I was at.  Something to do with glutamate, acetylcholine, and nicotine in the brain.  I almost wish I had a degree in neurology; it would make for less work on my part in trying to understand what looks like English, but is almost completely unfamiliar to me.  Lots of new words to look up and then to understand what they do within the brain.

Should I care?  I don't know.  I think some parents would just be thrilled their child was doing so amazingly well in spite of the predictions thrown at them, and leave it at that.  No, darn it, I want to KNOW what the heck is going on in there . . . because if I can figure it out and have evidence & research to back it up, maybe I can get more parents to understand about nutrition and that western medicine, with its side effects, doesn't have to be the way to go.  There are better, healthier choices out there.

Monday, August 1, 2011


Kaiden loves to be read to.  So much so, that this past week he's been throwing crazy tantrums until somebody reads to him!  He will go pick out a book and bring it to me to read, which I love.  And then he wants me to read the same book about 800 more times in a row . . . he's funny about new books.  Wants nothing to do with them at first, takes a few reads to get used to them.  And OMG, don't even TRY to "read" him a picture book with no words!  He will throw that book across the room every time.

I purchased some foam board and Nick cut it down for me into some nice sized pieces.  There's 40 pieces, two sided, so that makes 80 sides we can use to put words on.  I'm hoping to find some stickers to go along with the words, but if not, I'll have to take pictures, have them printed, cut them out, and tape them on.  Yes, flashcards would be easier, but he chews on them; they don't last long. 

Then I need to get some (really I should go write this on the shopping list RIGHT NOW) brightly colored tape, maybe along the lines of painter's tape, that I can write words on and stick to things at Kaiden's eye level.

Kaiden is very vocal but still no words.  Not since Dec 18th, 2009 when he had already said "apple" "asshole" (oops!) and "Mama".  At this point we think the seizures damaged the connections for speech and it's up to us to help him form some new connections.  A big thanks goes out to another T21 Mama for the suggestion of using a Fisher Price Smart Cycle - as the motor skills grow, so do the speech skills.  After all, speech is a motor skill if you think about it.  Some therapists recommend a treadmill, but what fun is that for the kid??  And now for the financial aspect of it: CRAIGSLIST!!!  Those blasted things are $80 new at Walmart and that's just for the cycle without any games.  I found one on craigslist that comes with 3 games for only $10.  Sure, I'm the 3rd owner and it needs a little help staying on the highest height setting, but as long as it works, I'm good.

I can't remember if I've mentioned it without going back and reading previous entries, but Kaiden has now mastered crawling.  He rarely belly-crawls like he used to.  And if I see him do it, I tell him "you can get up and crawl".  He looks at me and then gets up and crawls.  He also crawls to me now when I tell him it's mealtime.  "Kaiden, are you hungry? C'mon, let's go eat lunch!"  He pops up like a gopher at me saying his name, and you can see it in his face he recognizes "hungry" "eat" and "go".  He recognizes a lot more words/phrases than that.  Getting him to cooperate is another story.  This morning's breakfast involved a tantrum where he tried to fling his plateful of food across the room.  I told him that was not allowed and not acceptable behavior and he didn't try it again.  Which brings me to another point.  Raising children is a lot like raising dogs.  Or at least how I raise our dogs.  Training is simple: be consistent. Use the same words/phrases for the same things.  Our first pair of dogs learned so many phrases over our many years together I rarely had to give them commands, I'd just talk to them; they knew exactly what I meant.  So with Kaiden I've done the same thing.  Used the same words/phrases for the things I want him to learn.  Be consistent. It pays off.  I even cross reference his books & toys with him.  Some of his favorite books are the "First 100 Words" books - just pictures of items with the item's name.  We have 3 of these books and while there are quite a few unique items to each book, there are also overlaps.  So we will look at more than one book at a time and I point out the same things, to show him they are the same.  And I'll even quote from his story books about relevant items.  His favorite book is "Moo, Baa, La La La" by Sandry Boynton.  He LOVES farm animals!  So when we see pictures of farm animals, I quote from the SB book and point out the animals in the order they are in the story book.  I hope by the time he's walking he still loves farm animals as much so I can take him to a farm to see them.  The MN Zoo has a great farm section.

Although I didn't hear them say it, Nick heard the Gillette's doctors say they thought Kaiden had the skill set of a typical 4yr old with T21.  The best quote I have resulted from a conversation with Kaiden's physical therapist: "Standard (American) diet + standard therapies = standard result."  What does this mean? The best nutrition and alternative therapies pays off!  Don't give me that crap of "of course he's going to be delayed, he has Down Syndrome".   We gave away the therapy books that we'd purchased upon learning Kaiden had T21.  So many people love those books and find them so helpful.  In fact, they are given to new parents of  T21 baby by the school system!  However . . .  let me tell you, we found those books to be condescending and depressing. They are "standard therapy" all the way.   We've made up our own activities based on what Kaiden shows us he wants to do.  We've created rough housing games that he loves to help him learn to better control his balance.  He is finally just showing the beginnings of the stage where he wants to do stuff himself.

He is still not self-feeding.  I sure wish he was!  I even bought fun toddler plates & spoons/forks.  He prefers them over the boring regular bowls (and let me know it!) and even allowed me ONE TIME to assist him in loading the spoon and bringing to and put into his mouth.  One time only.  I know he CAN do it . . . I've seen him do it once or twice all by himself. . . so hopefully now that he is in the beginning stages of "do it myself" he will begin to feed himself.  Hopefully.  Hell, I was hoping for that a year ago.  We'll see.

Kaiden is also obsessed with a potty training book.  I hate that word, potty. It's baby talk!! But since he loves the book, I might as well use the words the book uses to be consistent. Does he just like the pictures, or does he understand what the book is about? Who knows, but it sure can't hurt to try.  I will be sad though when we no longer have a child in diapers.  I love cloth diapers!! 

We more travel plans this month and have an eye appt coming up on 8/25.  I have no doubt that Kaiden's vision will still be perfect - but I want him checked every year anyway.  I hope he inherited his father's vision and not mine!

That's all for now :) 

Tuesday, July 5, 2011

It's July!

I haven't been bitten since the last time I posted about it . . . it really does make me laugh when people say that Down's kids need LOTS of repetition to "get" something.  Well, if you count 3x as a lot, maybe.  Well, anyway, I'm glad the biting phase is over. 

We took Kaiden to the Gillette Children's free mobile outreach clinic here in town on 6/30 at the encouragement of his therapists, to show him off.  The program is designed for children who may have issues and their parents either don't know about Children's or can't afford a diagnostic visit.  It was nice to hear that they couldn't suggest anything further, that we are doing everything we possibly can for our boy - and they even said that they would have guessed he was older based on his abilities!  It's one thing to think it, but to hear it from an "expert" is kinda gratifying!

Today Kaiden's been driving me nuts . . . he is such a typical 2 yr old as far as tantrums go . . . it's been on and off all day.  Gotta love the kid!

Just an FYI for anyone who doesn't know . . . when Corelle dishes DO break, they don't just break.  They SHATTER.  Into shards and shards and shards . . . and yes, I got a minor stab wound on the bottom of my foot when I turned around as the badly stacked dirty dishes slid onto the floor and had a frying pan land on them.  I cleaned the floor 3 times, hope that took care of it all.  What a mess!!! Thankfully Kaiden was already in bed and nobody (else) got hurt.  15 years is a pretty good run though for those plates!

Trying out new recipes for supper tonight (as usual) - somewhat of a combination of my cranberry chicken + my apple butter chicken recipes, and a apple/parsnip mash recipe (from Martha Stewart that of course I modified) as a side dish.  Because . . . apparently . . . it is impossible for me to actually follow any recipes but my own! Eh, recipes?  Who needs 'em?  Just toss stuff together. Smells pretty good in here!

Friday, June 24, 2011

We have a crawler!!

Kaiden's been crawling now for a little while, keeps getting better at it!  He's also cruising furniture well. Yesterday he even walked behind a push-cart all by himself!! Obsessed with books, he even signed "eat" at me Wednesday morning for the first time since last summer! 

Oh yeah . . . he bites too.  But, to his credit, it only took 3 times of firm words and being quickly removed from my arms and set on the floor before he decided that biting mom (and giggling) wasn't such a good idea.  Now he'll gingerly bite my shirt and look up at me to see if that gets him in trouble (which it does).  Usually a "don't even think about it" is enough to make him stop.  But . . . he's two.  He's pushing boundries.  And that's a good thing!!

Sunday, June 5, 2011

so happy!

I am finally starting to come across more and more parents of children with Down Syndrome who are doing the same things we are!  Treating the individual child based on their dietary and musculoskeletal needs instead of working under the label that is Down's.

I really dislike that label.  It comes with expectations of what a child won't do well, and that the child will be developmentally delayed.  It doesn't have to be that way, not at all!!  Yes, Kaiden is delayed - but since his seizures stopped, he has kept up with development for the adjusted age he would be if you could take out that 10 month period where he had the seizures.  Even though it was extroardinarily painful to watch him have seizures, I am so thankful for them - because without them we would never have accidentally discovered Kaiden's amazing potential to be a suprisingly absolutely normal kid.  Who knew that nightshades could make such a difference?  (As well as the paleo diet.) And the therapies he's getting . . . I know Kaiden's going to be just fine and do well in life.  He's going to need a little extra therapeutic help getting there, but he WILL get there, no doubt about that.

Sunday, May 15, 2011

Happiness is . . .

a very tired child!  Friday Kaiden mastered the art of pulling to stand; he wants to do it all the time now!  Since he has much less leg/butt muscle development than a typical mobile toddler, this means all this pulling to stand is a great workout for him.  It wears him right out and he sleeps so well!!  I remember back when the seizures stopped and he began doing weight-bearing on all fours; his little arms would just shake with effort until he built up some muscle . . .

He is beginning to cruise furniture and actual creeping (what we usually call crawling); I have seen up to 4 alternating leg movements - done the right way at the right time, alternating with arm movements!  I love the big grin he gets on his face; he is so proud of himself!!

And on the subject of happiness . . . I really and truly offended someone a few days ago.  With what, you might ask?  My positive attitude!  Why?  Because I called that person out on their negativity. Interestingly enough, I offended them with my positive attitude before I called them out.  Without really intending to, this person made it plainly obvious they are unaware of my history or journey with Kaiden . . . if that person took the time to find out, they'd find a very different story indeed.  Life is what you choose to make it.  After what I've been thru, I choose to have a positive attitude.  Even when the choices I need to make are tough, I choose to view them in the most positive way possible.  I choose positivity.  I choose happiness.

And with that, I leave you with one of my favorite quotes (which actually hangs in my house):
"Happiness is not a matter of good fortune or worldly possessions. It's a mental attitude. It comes from appreciating what we have, instead of being miserable about what we don't have. It's so simple - yet so hard for the human mind to comprehend." ~Unknown

Saturday, April 23, 2011

I caught 'im in the act!

Mr. Smartypants who thought I wasn't watching . . . pulled himself to standing at the stairs on Wednesday!  It took some practice, a few tries, and he did it!  I had my cell phone in my pocket so I managed to get a (albeit slightly fuzzy) picture of him standing.  He can do it at the couch now too, if you give him a "cue" (one finger under an armpit gently nudging him up).  And I noticed yesterday and this morning that now when he "inchworms" across the floor, he's really picked up the pace!

I think I need to child-proof the house at a higher level because he's already eyeing the dining room table . . .

Monday, April 11, 2011

I quit!

Pumping, that is.  I've decided to stop short of my goal of 3 years.  To be clear, I'm only giving up pumping, not hand expressing.  I might still have milk left by the time Kaiden's 3, I might not.  We'll see.  Either way, I have plenty of milk in the freezer to last him to 3 and beyond so I still meet my goal - just not quite the way I originally intended. 

I've been exclusively pumping for 2 years and almost 3 months (with about a month of breastfeeding thrown in along with pumping).  My last pumping sessions will be the last week of April.  I'm down to only one session per day now, and hand expressing the rest of the time.  I still make about 1.5 oz of milk per day.  Most people probably would think that's not worth it, but it is to me.  Every little bit of fresh milk that I can give Kaiden only benefits him.  I'm okay with giving up pumping and letting my supply drop even further - Kaiden gets most of his liquid needs from his food; being grain-free, nothing is soaking up the liquid and holding onto it so he needs much less than the grain-eating individual.  Seriously, he drinks about 3 - 4 oz of liquid per day at most.  I give him all he asks for, and if he doesn't want it he sure lets me know.  He no longer wants a drink of water before bedtime, either.

What drove this decision?  It wasn't the time spent pumping, granted that's rather a PITA, but I committed to it. No, it's that Kaiden recently refused to drink straight breastmilk anymore.  I have to hide it in juice.  That, he loves.  But it means that he drinks even less milk.  In his 3 - 4 oz per day of liquids, only 1 - 2 oz of that is breastmilk - or less, sometimes none at all.  I need to start using what's in the freezer soon, although since it's in the deep freeze, it's safe for at least 1 year, maybe longer.  The oldest frozen milk I've ever given him was 13 months old, and smelled/tasted fine upon thawing.  The oldest milk currently in my freezer is from last June, after we'd been nightshade-free for a little while.

I'm sad about it, but he is showing me he is self-weaning.  And that's okay.  He's two.

Another update regarding his lymphedema . . . as long as we stay away from red meats, his little fingers are fine.  All of the other things to avoid on a lymphedema-specific diet are things we avoid on the paleo diet anyway, so that's really a non-issue.  I'm hoping we can go back to red meats at some point, but if not, at least he likes poultry! 

Looking back at it all, I still haven't come up with a definite answer of why this happened.  Why is his lymph system clogged or not working properly?  It had been working just fine . . . although I recently did up his overall meat intake just before this started.  Not by a whole lot, I wouldn't have thought that small amount would make a difference . . . but maybe that's what it was. Some people are sensitive to red meats - some have digestive issues, some have joint pain from it . . . and some, have lymph issues??  Lymphedema is related to a high level of proteins, so I'm thinking it must have something to do with the difference in proteins from red vs. white meats. What, I don't know yet, but I'll keep looking.

I'll leave you with a thought for today:  The Down Syndrome metabolic system is regarded as "less efficient" or "more primitive" than the non-Down Syndrom individual's metabolic system.  Is this really a bad thing that needs the negative connotation it gets?  Think about it.  If you could have a system that lets you know right away when there's a problem, rather than many years down the road . . . and the earlier you catch the problem the easier it is to treat, rather than trying to figure it out years later with so much buildup in the system . . . yes, it may be "more primitive" but I think that makes it much more efficient and easier to work with.

Friday, March 25, 2011

Time to rant . . .

WARNING: This post may offend.  There, I said it, you've been warned.

Society today over-medicates and over-sanitizes the hell out of everything!  Do you ever wonder why people are so sick today?  #1, they eat crap "food", leading to an unhealthy body that can't fight off anything.  #2, they over sanitize everything, leading to antibiotic resistant bacteria.  Seriously, the commercial that states "never touch a germy soap pump again"??  REALLY??  What happens after you touch said germy pump?  YOU WASH YOUR HANDS!!!  If you're hearing a loud "bonk, bonk, bonk" that's the sound of my head hitting the wall, and the whooshing sound is me rolling my eyes.

I got the feeling last night that some people really thought I'm an idiot and probably a bad mother.  Why?  Because I let Kaiden get into everything.  Yes, even the Walmart shopping carts.  I know they are a fantastic source of bacteria, viruses, and probably fungi.  But before you judge (and sanitize yourself for even reading this), ask yourself this question:  how often do you get sick, and how often do you run to the doctor? Here - we don't.  Why?  Because we don't need to. We aren't just "lucky". For one, we eat FOOD, not FDA-approved non-food.  Read up on the paleo diet, don't take my word for it.  For another, holistic remedies are cheap and they WORK. And we rarely need them.

People get so grossed out seeing a kid chewing on something other than a toy.  Gee, where do you think their hands (and the toy) have been?  On the floor!!!  Right where you and the dog walked, after having been outside where the rabbits, squirrrels, birds and other animals poop all over everything.  But eeeeewwwww, GROSS, if they licked the floor.  Uh, same thing, there's just an extra middle-man.

And just for the record, yes, we wash our hands and practice good hygiene.  But don't expect me to sanitize everything.  Doing that is what helps people get sick in the first place.

Thursday, March 17, 2011

EEK! A toddling toddler??

We are getting closer!!!  Mr. Kaiden still doesn't do 4-point creeping (what we normally call crawling), he 'inchworms",  but his assisted walking is getting so much better!  He only needs to hold onto our hands and off we go!  When he decides he's had enough, he sits.

My favorite new thing is that when we go to read some books - I know which book is his favorite (Moo, Baa, La la la by Sandra Boynton), I purposely bury it in the pile of books and grab a different book to start with.  He has now done this several times - he pushes the book I'm holding out of his way, then finds and grabs his favorite book.  Then he closes the book I'm trying to read to him, takes it out of my hands and gives me his favorite and tries to open it.  Oh, and I must read it several times; once isn't enough!  He is so darn cute!!

Kaiden is now beginning to understand the concept of pointing - when we point to something, he looks at our hand and follows it to what we are pointing at, no problem, even the therapists got to see that today.  But, he still doesn't point to anything himself.  Same with eating.  Doesn't want to self-feed.  In fact, earlier this week he grabbed the spoon from me and I was able to help him load some food on it - but to get that spoon to his mouth - ooooh did that ever make him mad!  He yanked the spoon out of my hand and threw it on the floor with some authority, then screamed at me!  I don't get this - he brings everything ELSE to his mouth, why not food??

Funny thing is, I've found he learns new skills best by watching other children - but it's not just any children, he learns best by watching other children with Down Syndrome.  I never thought that when we started going to a support group that THAT would be the result . . . what a funny child he is!!

Wednesday, March 16, 2011

Update on the lymphedema

I came across the section on the lymphatic system in one of my holistic healing books while looking for something unrelated and gave it a re-read, and I'm glad I did!  It suggests, for getting the lymphatic system back on track, certain dietary changes for awhile along with herbal help - hawthorne is of course mentioned.  For the most part it's stuff we already do, like no refined sugars, no processed foods, no caffeine, no alcohol, but it also listed no red meats and meat fats.  It went on to state that to encourage lymphatic drainage, the individual should go on an all-fresh-fruit diet for awhile, then slowly reintroduce fresh veggies, then slowly reintroduce white meats.  I thought, what the heck, it certainly can't hurt.  There are fruititarians out there, who believe that eating fruit only is the way to go . . . so I gave Kaiden only fruit, plant fats (avacado & coconut milk), and chia seeds for 3 days, then added in veggies for 2 days, then added in chicken breast.  And you know what?  His fingers look almost NORMAL!  The swelling is I'd say 80% gone.  This is something I definitely want to do this again with him; I am willing to bet we'd get back to completely normal. 

However, we do have a weight check coming up in a month; doing a fruit only diet isn't exactly going to make him gain weight, which is what the pediatrician thinks he needs to do.  He is a light little peanut at around 20lbs, but he is growing and gaining skills, so I'm not worried.  I could see after just 3 days on fruit he was a little skinnier although he still has plenty of baby chub . . . I don't want to take away all his baby chub, so we'll be doing this in steps.

Still, though, it just floors me that western medicine claims there is no cure for lymphedema . . .

Thursday, March 3, 2011

Seems to be working . . .

Tuesday night Kaiden got his first dose of Hawthorn Heart Berry Syrup.  I keep hawthorne on hand for Lola, with her significant heart murmur.  And what happened?  Kaiden peed all night long, and peed heavily all day Wednesday, without upping his normal liquid intake.  His fingers do look better; the color is better and his hands aren't turning blue anywhere near as much. 

What does this tell me?  That his heart wasn't working as efficiently as it could and he was indeed retaining fluids.  The fingers on his left hand may take awhile to heal . . . having them swell up so badly and burst the capillaries is like a bad injury.  Time will tell how long it takes.

Another WIN for holistic medicine . . . and remember, western medicine says there is "no cure for lymphedema". ;-) 

I'm not saying we should all stop listening to our western medicine doctors . . . but please don't take their word as law.  There ARE alternatives, and in my opinion, much healthier ones!

Tuesday, March 1, 2011


Maybe the horseradish was a coincidence, or maybe it showcased an underlying problem.  Lymphedema is the closest match to what's going on with Kaiden's fingers.  They are fine when he wakes up, whether from a nap or overnight.  But as soon as he's active again, the swelling & bluish color comes back.  His fingers are not consistently hot when swollen; it's not inflammation.  They are not consistently cold, either, and do not turn white; not Raynauds Syndrome.  It's a fairly slow progression from turning pink to swollen . . . the swelling will last days or weeks before the the swelling gets bad enough that it bursts the capillaries, making his fingers basically bruised.  It's in 3 fingers on his left hand, extending into the palm, and has spread to one finger on his right hand.  That one is pink and swollen, but not nearly as swollen as the others got and looks to be receeding, so maybe the swelling won't burst the capillaries on that one.

According to western medicine, as long as you aren't born without a lymph system, there is no known cause and certainly no cure.

According to holistic medicine, hawthorne (for the heart) and/or dandelion leaves added to the diet will take care of it (along with a healthy holistic diet, of course). 

Kaiden's hands have always spontaneously turned blue, then within 30 seconds to a minute they go back to normal . . . I took him to an endocrinologist for this about a year ago and was told it's very common with Down's kids; it's a "hiccup of the vascular system".  And not to worry about it unless his fingers turn blue and stay blue, which they don't.

Kaiden's heart has been extensively checked out by ultrasound/echocardiogram (at least I think that's the right term) - while in utero and 3 times after birth.  In utero we were told one wall of his heart leaned a little to the left, but everything else looked fine and he would be monitored after birth to verify there were no problems.  He was born with an open ductus; common with preemies (which he was) and it's also common with Down's kids (which he is).  Either way, 2 doses of neoprofin and it closed, verified by the last 2 monitoring checks.

But, as heart problems are so common with Down's kids, it is possible they missed something tiny, or something not visible on the screen.  So, hawthorne it is for now.  It can't hurt him at any rate!  Dandelions will come when the snow melts. ;-)

Saturday, February 12, 2011

Just putting some thoughts down

Things to mull over . . . with the apparent horseradish sensitivity . . . each time the dish was served, it was served with fresh pineapple.  Kaiden has always gotten a little belly rash with fresh pineapple, so I know he's got a little bit of a sensitivity there and I rarely give it to him.  His hand swelled up once more, during his birthday party where he ate fresh pineapple, but no horseradish.

Maybe it was the combination of the two together, I don't know. 


Pineapple Juice

Pineapple juice contains bromelain in its stem; the protein bromelain has multiple anti-inflammatory properties and specifically breaks down mucus in the sinus passages. According to Alternative Medicine Review, bromelain blocks prostaglandin tissue-swelling effects and slows fluid accumulation in damaged tissue areas.

also from the same article:

Horseradish says that medicinal effects of horseradish have been documented as early as the mid-1500s. Horseradish is a cruciferous plant related to cabbages; simply the aroma of grated fresh horseradish root may reduce nasal congestion. Placing freshly grated root in the mouth until the taste is absorbed proves an effective way to reduce mucus levels quickly. Horseradish also has antibacterial properties in its root oils to prevent sinus infection development, and eating horseradish can help remove excessive fluid buildup in the body.

This is where I'm thinking it was the two together - if he's sensitive to both, having the opposite reactions to them than most people do - instead of relieving swelling & excessive fluid buildup, he got the opposite.  No clue why it only affected his left hand though. 

The swelling, later burst capillaries, and resulting bruising can be assiciated with vasculitis, cellulitis, Raynaud's Syndrome, and cryoglobulinemia  . . . but each one of those, the swelling/bruising is extremely painful, whereas Kaiden shows no pain whatsoever.  He uses the hand just like he normally would and is happy and active.  Which brings me back to the thought that's it's most likely a food sensitivity.

Not only have I taken away horseradish, I have eliminated all pineapple from his diet.  He was getting frozen pineapple with breakfast almost every morning.  No more flare-ups since.  The swelling is receding, and the color is beginning to go back to normal.  I figure, like a bad injury, it will take 6 - 8 weeks to look normal again.  Then we'll just have to keep an eye on it and see if it ever happens again.

Now on to Kaiden's 2 yr well-visit with the pediatrician.  Somehow, Kaiden grew taller, got chunkier . . . but weighs less???  How does THAT happen??  It's only 1/2 lb or so but still, that doesn't make any sense.  They do have 2 scales there, and should have tried out both scales just to make sure the first one wasn't off.  So this means they want him back in in another 3 months for a weight check.  Being on the paleo diet means you will be at your optimum weight . . . I'm sorry, but I'm not feeding him crap just to make him gain weight.  He has plenty of chub and has even put some on.  Oh - and . . . get this!!  He is SO active, wants to play all the time, and with his 2 yr molars coming in, isn't sleeping well at night.  He's happy, not cranky, so he's getting enough sleep . . . but of course being so active is blamed for his 1/2 lb weight loss.  So his pediatrician suggested I "just put him down in the afternoon and walk away".  HAHAHAHAHAHAHAHAA!!!!!!!  Yeah RIGHT!!  Even if he doesn't have anything to play with, he's not going to go to sleep!  He's ACTIVE!!! 

Now does this make sense??  I get the fact that he needs calories/fat for cognitive development and they are worried that he's not getting enough for his activity level . . . but if he refuses to slow down, and already eats very, very well with A LOT of fat & calories (see paleo diet!!), and is growing and happy and active and developing fantastically for a child with Down Syndrome . . . I'm supposed to take away his toys and force quiet time??  How does that help his cognitive development when there is nothing to stimulate him??  Rather a paradox, don't you think?

Wednesday, January 19, 2011

almost 2 . . .

I can't believe Kaiden's gonna be two soon!  How did THAT happen??

In the last couple days, he's really been working hard on figuring out where to put his feet/legs to stand up.  He still needs assistance; I hold out my hands, he lifts his arms, I give him minimal support under his arms - just to steady him, not to pick him up.  Then he stands!  And once he's standing, we give him our fingers to hold onto and while we walk backward, he takes steps forward!  He's making so much progress . . . he has nodded yes appropriately a few times and I *think* he's trying to repeat some simple words, like "hi".  But the giggles . . . after those 8 long seizure filled months, the giggles are just the BEST to hear!!

I think Kaiden's got a sensitivity to horseradish.  Outside of a food source, horseradish is commonly used to alleviate swelling . . . and in individuals sensitive to it, for most of them the reaction is for their throat/tongue to swell up.  However, in Kaiden, his little fingers swell up.  The first time it happened, I did not connect it with food.  One of his pinky fingers swelled up a little, but not too bad.  I thought he banged it on something, and in a few days it cleared up.  The second time, his pinky and middle fingers swelled up, and then a few days later, those fingers were worse and the back of his hand swelled up.  We went through the list of possibilities - thyroid disorder (no other symptoms), blood disorder (no other symptoms), staph infection (possible, so I treated him for it with grapefruit seed extract which has been proven to kill staph), or allergic reaction.  When the GSE didn't do anything (and it didn't get any worse) I went to allergic reaction and looked at his environment, then his diet.  And it made sense . . . the first time I made the dish (pork roast with a horseradish/currant sauce - totally yummy!!!!) the horseradish was old, and I cooked it further.  It was about the same time frame as the first pinky swelling.  The next time I made the dish, I used fresh horseradish and didn't cook it, and it was that night his fingers swelled.  Two days later, he had the leftovers and the next day is when we noticed the back of his hand was now swollen. 

He wasn't in any pain; he used the fingers just like he normally would.  Skin color remained good, finger temperature remained good.  I kept checking for edema, but there wasn't any.  It's now been one week since he last ate horseradish . . . the swelling is going down and the bruising (from burst capillaries) has come in.  It looks terrible!  But, he's still not showing any signs of pain and has been giggling quite a lot these last few days so I'm betting he feels just fine.

To make absolutely sure it was the horseradish, I probably should try it once more . . . but I will cook that darn horseradish almost to death first before he eats it.  If his fingers are going to swell, I want as little discomfort as possible.  Dang . . . that was one tasty dish too.  So simple, just pork roast, and the sauce was currants and chopped horseradish.  Made for a delicious sweet/sour dish.  If you cook the sauce, you lose the sweetness from the currants, which is why I made it raw last time (having learned the first time, tasting it before and after cooking).

Now on to pumping . . . yes, I'm still doing it!  2 years of pumping milk.  The last time I calculated - last spring sometime . . . I estimated I'd produced approximately 95 gallons.  I should do the calculations again and see what I'm up to now!  I didn't make my latest goal though.  I wanted him on my milk for 3 meals per day until he turned two.  I almost made it . . . had to cut out one meal a month early.  Emotional stress will decrease the milk supply and it is difficult to get back unless you really want to work at it.  Being so close to my goal, I let it go.  He's okay with it.  I use his lunch as his one meal with juice or water and it's been a good opportunity to get him to try out different sippy cups.  I want to move him to a straw cup, but the only one I've found I like valve-wise, the stem of the straw stops about an inch from the bottom of the cup!  What a waste of liquid!  Somebody in the design department wasn't too bright there.

I'd like to go another 6 months with him having milk twice per day - but he doesn't always want it at breakfast so it will be easy to cut that one out.  I'm really letting him decide.  He's very particular about the amount of milk he wants to drink anyway!  He will only take 1 oz at breakfast, and 2 oz at supper.  When he had it for lunch too, he would only take 1.25 oz.  That doesn't look like a lot of liquid during the day . . . he does drink water in the evenings and at night, but you have to remember that he gets most of his liquid intake from his food.  And since there is no grain soaking it all up, he gets what he needs.

Two years down . . . one to go . . . hopefully my supply will be able to keep up with what I want him to have.  My goal - at three years, I shut off the tap and he gets frozen until it's gone, which should last about 6 months.  I wanted to follow (from Jean M. Auel's Earth Children series of books) the neolithic era - birth year, nursing year, walking year, weaning year - which would put a child at about 3.5 years old to be done with breastmilk.  I bet all the doctors would tell me that exclusively pumping for 2 years is impossible . . . let alone 3!  Me & Kaiden, proving the western medical industry wrong day after day!