Typically, I'm not a frou frou type girl. I don't spend a lot of time or money on makeup or skin care. Not that I shouldn't; I just never learned about it when I was younger and so didn't develop good skin care habits.
I was over 40 before I discovered smooth, soft skin! What a shame to wait so long. I started using Waiora's Revitalizing Facial Serum and Regenerating Wrinkle Treatment on a regular basis just to combat wrinkles. One day, about a week later, upon inadvertently touching my face, I discovered smooth, soft skin! Wow! I didn't really look different (after all, what product would eliminate wrinkles in a week?), but my skin was so much softer, smoother, silkier. Just wonderful!
Obviously, I'd been missing out on all those good habits practiced by frou frou gals all those years. But not anymore. I get my Facial Serum and Wrinkle Treatment every day now!
Back in June, we took Demi off the GFCF diet. We didn't see a significant difference at first. However, over the course of the summer, it seemed that her number of tantrums increased.
While on the diet, I had moments of pleasant surprise when I witnessed her doing something more easily than before or doing something new that she couldn't do before. Her tantrum moments decreased to maybe once every two months or so - not that often. (By "tantrum," I mean that she gets fixated on something - something she wants or something that doesn't go as planned - and gets very upset when she doesn't get it or it doesn't happen as she wants. No explanation makes any difference. Redirection doesn't work. She just won't listen to anything.)
By August (after two months off the diet), the tantrums were maybe once a month. Since we hadn't seen them in a while, it was quite stressful. I didn't do a very good job of keeping track, so I didn't have exact numbers. Since supplements had not been 100% regular over the summer, I decided to get them back on a regular schedule and see if that resolved things. It did not. The end of August came and went, and September passed by.
Finally, last Sunday (9/27/09), after another tantrum (because we didn't have eggs to make pancakes), we decided to put her back on the diet. DH had not been terribly supportive of the diet, thinking it didn't help, but even he agreed to put her back on the diet. If the tantrums decrease (I'm trying to keep better track!), I think he'll agree that the diet makes a difference.
In addition to the increased tantrums, I had more moments of unpleasant surprise, when things were harder for her or she suddenly couldn't do something that she had done before. Concepts at school which she had mastered were suddenly lost. Teachers commented that she was inconsistent.
It's been almost two weeks now. Too early to really tell, but we haven't had any tantrums yet - just whiny on occasion. Just yesterday, I was pleasantly surprised that she did her math homework mostly correctly and mostly independently. While she was doing that at the start of school (early August), she has been struggling lately.
I hope I start to see more moments of pleasant surprise again. I don't expect any huge sudden changes, but I realize how those "small," "insignificant" changes really do add up over time. They become big when you start to see them evaporate!
On a lighter note, Demi learned to ride a bike this past week! We are very excited about that! We’ve tried getting her to ride on several occasions over the past few years. Her younger sister has been riding for almost two years now. But I don’t think Demi has been ready until now.
We started by getting her comfortable on the bike without pedals. The seat was low and she could easily put her feet on the ground for stability. She started just by pushing herself around on the level drive way. Next, she was able to coast down a gentle slope in the yard, balancing on two wheels, fairly easily for very short distances. Next, she was able to coast down the gentle slope of our street for a pretty good distance.
Next, we put the pedals back on and encouraged her to coast like before, but with her feet on the pedals. After that, since she had to get back up the slope, she started pedaling on her own relatively easily.
Then it was a matter of practicing to build strength and confidence. By the end of the week, she was able to ride down the street and all the way back up on her own. It's not an insignificant slope! Yesterday, she did that three times!
My husband has been very diligent about practicing with her every night. He bribed her each day with dessert or candy. If she did X, she would get her reward. Although she frequently didn't want to continue, she would toil on to get her reward. He raised the bar pretty significantly each day, but she was up to the task!
Of course, it was not without incident. DH had been running the length of the street with her to ensure she didn't fall over. The first time he had her do it without him, she fell over and skinned her knee pretty badly. The next day, she had new knee and elbow pads, along with little riding gloves. That day, with her new pads, she took another good tumble. Because of her pads, she "only" had bruises on her back and hip where she hit. Since she couldn't see any scratches, she "recovered" remarkably well.
Yesterday, we went to our local BMX track for Dana to practice. Demi was riding on a smooth track around the outside of the BMX track. As Dana was coming off the track onto the smooth path, Demi was coming down a small hill on the same path and (you know what happened) - front end collision! Unfortunately, Demi caught the brunt of it, flew over her handle bars, and landed on her face. :o
So now the poor dear has a skinned knee, a big bruise on her hip, a few scratches on her back, a huge fat lip, and scratches from her nose to her chin. What a rough week! BUT, in true Kabuki fashion, she has not complained at all! She's as cheery and happy as always, proud of herself for her huge accomplishment this week. We are very proud of her, too!
We have a lot going on this summer, so I’m overdue for an update.
Last week, we went back to the Dr. (pediatrician with a “natural” bent) to discuss Demi’s custom vitamins and next steps. He said if the vitamins helped, we’d see a difference within a month. That hasn’t happened, so I went back to find out what to do next.
I also asked about GFCF. Although I believe GFCF helped with her meltdowns and emotional regulation, I had never seen a huge behavior difference. We've been doing it for 1.5yrs. I asked about re-introducing gluten and casein. He said to do them separately so we’d know if one and not the other caused a problem. He said gluten would be more likely to cause behavioral issues than casein.
We started Demi back on dairy last Friday, with no noticeable side effects. By accident, while at summer school, she was given ‘Nilla Wafers this past Tuesday. So, we’d had four days without casein, which should have been enough to verify that casein did not cause any substantial reactions. So, as of Tuesday, we started her back on gluten. Jury’s still out on that – it’s been five days. So far so good.
At the Dr’s last week, he mentioned three possible next steps: MB-12 injections, bovine colostrum, and neurotransmitters (oral). Of those things, he said the MB-12 injections would have the highest chance of making a difference (as judged by population at large, not Demi specifically) and they were the cheapest option. So, I ordered them and they arrived earlier this week. I’ve opted not to start them just yet, waiting for the gluten to reveal itself (or not).
At the Pre-IEP meeting, all the teachers recommended retention. I resisted the idea, then kind of got used to it. At the IEP meeting, they all recommended promotion. I went along with it, since that's what I wanted, although I wasn't 100% on it.
Just this past weekend, I started having major second thoughts again. A series of coincidences (are there any coincidences?) made it pretty clear to me that God was sending me a message (hitting me over the head with a brick might be more accurate).
Saturday evening, we went to a church event and I ended up sitting next to a woman with a special needs child and discussing the retention question with her. They had gone through the debate with her 13 yo special needs (ADD, etc, learning disabled) child, ended up retaining her in 5th grade, and then sent her to a private school for learning disabilities for 6th grade where she has thrived.
Sunday morning while sitting in church, I started thinking about all the advantages to retention - confidence in her academic abilities, having school be fun, self-esteem, strengthening her academic foundation, etc. The social aspect that I'd been leaning on - I didn't want her to lose her friends; I didn't want two sisters in the same grade - seemed less important.
After church Sunday, I went to Starbucks instead of going home. Atypical, since my family was at home waiting for me. My cell phone died, so my husband couldn't talk me out of it. So I went and ended up meeting a father and son. Guess what? The son was special. I ended up talking to the father at length about challenges, including the retention debate, which he just went through again for 9th grade.
Something he said made more sense than it had before: At this point in Demi's academic career, we don't KNOW her potential. So we HAVE to give her the best opportunity to succeed academically, which I believe would be retention now, for all the reasons mentioned above.
This week, I received a number of end-of-year assessment results, including CRCT, all of which were more positive than negative. She actually passed (barely!) all of her CRCT's. Although she's struggling, she's getting it. With another year, she'll have a much firmer foundation and perhaps be able to succeed on her own. (I'm always optimistic!)
This video is over a year old, but it might be helpful to other parents wanting to compare voice quality with another KS child. Demi was 6yo in Kindergarten.
I guess my reprieve is over for now. Earlier this year, I was thinking how nice it's been that we haven't been dealing with any "issues," other than the ongoing ones - twice weekly therapy and night homework struggles.
I can't remember now what prompted me, but I decided to act on a referral from last July and made an appointment with a vision specialist. For a long time, Demi had been doing odd things that made you wonder what she was seeing: she can't write "on" a line, she orients shapes/letters in strange ways sometimes, she practically puts her head on the table to do her work, and more.
This past Monday, we visited a doctor specializing in visual perception issues. Before making the appointment, I talked to the referring doctor who briefly mentioned esophoria. I don't recall him mentioning that before. The specialist, Dr. Sharon Berger, wholeheartedly confirmed a diagnosis for Demi of esophoria.
I found a description to esophoria online: "Esophoria: Another eye coordination problem is termed esophoria, which is a tendency for the eyes to turn inwards. The educational implication of this particular problem is that a child with esophoria sees things smaller than what they actually are. In order to see an object properly, it is necessary to make the object larger. The only means at the disposal of the child to make it larger is to bring it closer. Eventually, the child is observed with his head buried in a book and still not achieving."
I couldn't believe how accurately that explanation described Demi! She has ALWAYS, from the time she could sit at a table and look at something, had her face right on the table! She always puts things very close to her face. She still like looking at little character figures, but she puts them right up to her face. After this explanation, I'm amazed she can read as well as she can. Her weakness is math.
Thankfully, the LEA at school pushed to get her large print materials for the CRCT, just on the hunch that it might help her. I'm SO glad she had them, given this new information. (We won't get the results of the testing for another few weeks.) Her IEP is coming up next Monday, so large print materials for next year will definitely be on the agenda. The problem will be figuring out whether she'll be in first grade or second grade.
Ok, four weeks later and I'm in a different place now. Her actual IEP is next week, but I don't have to give them a final answer on the retention yet. Just last Friday, I spoke to the mother of a first grader who was having trouble reading. So much trouble that she elected to remove the child from school in order to provide the copious one-on-one time that she needed to learn to read. Her plan is to revisit kindergarten and all of first grade over four months. So far, she has been making good progress. She's doing 21 days of curriculum each day.
After that conversation, I started thinking that maybe we could do the same thing over the summer to catch Demi up in math. Would it really be possible to revisit weak areas from kindergarten, review the first half of first grade, and push through the last half of first grade so that she has a firm grasp on all the concepts of first grade? A decided maybe.
Additional issues we'll be dealing with this summer: juggling vitamins/meds for attention and vision therapy to repair binocular vision. A full plate, no doubt, but not impossible.
In order to judge the effectiveness of attention meds, I would have to be working with her in an educational setting. "Summer School" would assist me in making better judgments about those meds. Same goes for vision therapy. With a structured schedule for school, I would have to incorporate 10-15 minutes each day for vision therapy and also be better able to judge whether the therapy is making any difference.
Challenge: She resists my efforts to teach her or work with her. She immediately starts negotiating whenever I say it's time for homework. It's a frustrating experience for both of us. How will I overcome that attitude? I suppose the answer is to "make it fun," but I seem to be incapable of doing that. I believe I was cheated on the creativity gene.
I've had a rough week. Monday night, Demi got a test back where she missed 9 out of 10. It's getting close to CRCT time. (Here in GA, that's the minimum standard test at the end of each grade.) Although she's in special ed, I had thought, with enough help, that she'd be able to at least pass the CRCT. It doesn't look like that's going to happen. Tuesday, I attended a "pre-IEP" meeting. In retrospect, I believe the purpose of the meeting was to throw out the possibility of retaining Demi in first grade. Not something I wanted to hear. The irony is that, if she weren't doing as well as she is, they probably wouldn't be recommending retention; they would recommend to pass her along. Since she has the ability to master first grade skills the second time around, they're recommending to have her repeat first grade.
I'm angry. 1. I'm angry at God for visiting this challenge on me that I am so incapable of meeting. 2. I'm angry at myself for being so incapable. 3. I'm angry that we've worked so hard (she works 10 times harder than most other students) and we're still coming up short.
Since Demi has a history of "slimy ear" (fungal ear infection), I'll relate our latest episode.
A couple of weeks before Christmas, we ran out of ThreeLac, one of the supplements we use to fight yeast. Just three days later, Demi started complaining that her ear hurt.
Based on previous results, I immediately gave her some ibuprofen for pain and swabbed her ear with anti-fungal cream. That night, she woke up twice in quite a bit of pain. I comforted her as best I could, giving her a bit more ibuprofen and another swab each time.
The next morning, she was pain free and went to school as normal. (Good thing, since her big Christmas party was that day!) We continued that routine for the next couple of days. I thought it was taken care of.
A few days after stopping, the pain came back, in both ears this time. I repeated the same thing once again, but kept it up for a week after the pain dissapated.
I just got a couple of sampler packets of a new sweetener called Truvia. Anybody heard of it? It says it's made with erythritol.
So, onto the internet. What's it all about? Is it truly "natural?" Any harmful effects? Here's what I've found so far:
derived from sugar, just like xylitol
60-70% as sweet as sugar
.2 calories per gram ("almost" calorie free)
absorbed by the small intestines and less likely to cause any negative side effect like xylitol or maltitol (unless consumed in excessive quantities)
does not cause cavities (like xylitol) does not sound like it's great to bake with as it tends to dry things out, doesn't dissolve as well as sugar, and may not give the desired consistency
although it's been around for awhile (FDA GRAS status since 1997), it's not widely available (Maybe Truvia will change that?)
I tried the Truvia sample packets in my tea this morning. Tastes ok to me. I didn't find anything negative about, but perhaps I didn't look hard enough. Anyone have additional information?
Nutrition in general and supplements are way under-rated. I guess because you can't pack them into a single pill (just lots of little pills taken regularly). They also aren't come by easily, unless you happen to be blessed with health-conscious parents who drum it into you from day one. If you aren't that lucky (as most of us aren't), it takes a considerable life style adjustment to eat the right foods and take the right supplements. I'm speaking primarily about health challenged kids/people who could benefit so mightily from good nutrition and supplements rather than drugs.
I've mentioned KSN before, a group I regularly follow since Demi has Kabuki. I've recently met a poster there who really gets it. I hope others in the group pick up on the benefit that nutrition (like Juice Plus, gfcf diet, allergen awareness, organic, etc) and supplements (fish oil (most of them do this already), melatonin, ALA, probiotics, yeast fighters, etc., etc.) could have on their children. Yes, it takes some effort (mostly in the learning, not the doing!), but it's SO much better than drugs with side effects and unknown long term effects.
I've learned most of it from the AutismNCD group, even though Demi doesn't have autism. She still has toxins and yeast issues that affect behavior. I specifically started her on Natural Cellular Defense because I thought it might improve cognition. I had no idea that I would discover so much more about nutrition and supplements that would benefit her.
My suggestion for a parent wanting to start but not knowing where: Just start! It usually doesn't matter where. NCD is easy to start with. Probiotics are easy to start. Just start with ONE THING and then build from there. It's not that hard once you get started!!
Ok, maybe not brilliance, but brightness at least. Math is not Demi's strong point, but occasionally while doing homework, she seems to "get it." There's that moment of brightness. At least the answers come a bit more quickly and naturally. Rarely and for a very short burst. But they come.
I wonder where they come from? How do these moments of understanding happen?
Just today, I spoke to her resource (aka special ed) teacher who said she just doesn't get numbers. I guess she hasn't yet been dazzled by one of Dem's "moments of brilliance." While I recognize that's true most of the time, why does she get it sometimes and not others. It would be nice to know...
This is one roller coaster ride I'd rather get off. I'm sure I can't be alone.
One day it seems that things might be getting better. She's doing a little better. Maybe she's turned a corner. Maybe... The next day, she can't seem to grasp the most basic concept that I repeat five or eight times. Her attention is totally gone; she can't focus for more than 2 microseconds. Then I get frustrated. Then I feel bad.
I get reports from everyone else who works with her that she does everything so willingly, she's so sweet, never complains. I guess she saves all that other stuff for me. I wonder why no one else gets as frustrated with her as I do. Is it because they don't let the uncertain future cloud their emotions today? I try very hard to do that but often fail.
She IS wonderfully sweet and my heart practically bursts when just looking at her sometimes, fully enjoying the joy that she is today.
To update my last ear pain post, the pain/infection/problem never recurred after continuing the antifungal swabs. I continued for probably 4 more days. She was absolutely fine. Never filled the prescription from the Dr.
We started back to school last Monday - almost two weeks already!
Demi was VERY ready to go to First Grade. She was excited to tell anyone who would listen.
The first day was exciting for me because she came home with a phrase ("No Homework") written in her papers - and it was legible! She also had a list of spelling words (granted, very easy ones) - only five - that she already knew.
Her special ed teacher (same as last year) was gushing over how much better she was reading now. She has definitely come a long way since last year - but I guess that's true for all "normal" kids. Since Demi's not exactly "normal", it's just amazing to me that she's pretty much at the same level as her peers (just not as independent).
This second week of school has been a little more difficult (90 mins to do her homework on Monday!), but she seems to be getting the concepts in order to keep up. It just takes A LOT of repetition. Her reading is going very well. Math, not so well. Writing, despite the first day excitement, is also going slowly.
In therapy over the summer, her OT has been doing a lot of vestibular stimulation (spinning, crawling with a tennis ball, other exercises). It can sometimes positively impact writing and small motor skills.
We also made a change to her glasses which will hopefully help with the vision issues she seemed to be having last year.
Her speech is gradually becoming clearer, although she still has a long way to go. I would guess that people outside her regular sphere could understand 50% of what she's saying on the first try. Probably 80-90% after asking her to repeat it a few times.
She still takes her supplements every day. Over the summer, I got a bit slack at times (typically when traveling). I noticed behavior changes when she was off them for more than a few days. The changes were mostly decreased attention/increased distractability.
Still haven't filled the prescription. (See the last ear post.)
The last post was on Monday; it's now Friday. I got her back on her regular supplements, which include some yeast fighters, although I didn't double up on anything. We ran out of ThreeLac and I've not yet received the new, so she hasn't had that since Tuesday.
Although we have not seen any discharge, her pain continued Tues and Wed. I gave her acetominophen for the pain, every 4-6 hrs or so as she complained vehemently about her ear. The pain woke her up at night Monday and Tuesday.
Wednesday morning, I swabbed an antifungal cream into her ear. Something similar to Lotrimin. I swabbed it again Wednesday evening. Wednesday evening, she slept through the night without pain. No pain meds on Thursday. I swabbed again Thurday night. She slept well again Thursday night, with no pain since late Wednesday.
I'll continue the antifungal swabs for another several days to make sure it's gone. Not sure if it was the supplements or the antifungal cream which got it under control. I have used NO ANTIBIOTICS, so it wasn't swimmer's ear as diagnosed by the dr's office.
The last time I used an antifungal cream, we only did it once. The infection seemed to subside immediately, but I didn't believe that was the solution because we only did it ONCE. Yet, this time, the pain seemed to subside relatively quickly once the cream was introduced.
Another event which has gone unreported was Demi's bilateral otoplasty. Back in April, she underwent a day surgery to have her ears pinned back and rotated slightly.
Before the operation, her ears were significantly cupped (see the darling picture at left). So much so that her hearing aids would not stay on without special straps to keep them in place. There was simply no "behind the ear" there. Without the straps, the hearing aid flapped in the breeze, attached only by the earmold.
Here are some "in between" pictures. After the surgery, they wrapped her head with layers of gauze like a helmet. She had to keep that on for three days. After three days, we got a headband to wear over her ears for protection and keep them flattened. I ended up making my own headband, because the pictured option was not the best. She wore the headband 24/7 for two weeks, then just at night for another two weeks. (In reality, she wasn't wearing it after the first two weeks, because it inevitably came off during the night.)
Here are the AFTER pictures.
Do they look normal, unremarkable? Yea!!
These two pictures were taken just last week and today.
We "lost" a little bit on the left ear - it's not quite as tightly pinned as the right. But they still look great compared to what they were before. (Take a look back at the BEFORE picture if you don't think so!) We're now 12 weeks post-surgery so they're totally healed with no complications.
Way too long between posts, especially with all the stuff going on.
The latest has to do with those darned slimy ears. This time, we haven't reached the slime stage yet. Demi started complaining yesterday that her ear hurt - RED FLAG. Early this morning, she said it hurt "a little". Later, it was back to "It really hurts!" so I took her in.
Again, they diagnosed an outer ear infection - the standard Swimmer's Ear to be treated with antibiotics. I asked specifically about the fungal infection, but was told it was "unlikely" because she felt pain to the touch, which wasn't characteristic of the fungal infection. He gave me a prescription which contained both an antibiotic and an antifungal in order to cover both possibilities.
Instead of filling the prescription, I'm upping her yeast protocol to see how it works. Because of a trip to the grandparents, a camping trip, and sheer laziness for 4 days, she's been without her ThreeLac for two weeks now. She had been without most of her supplements for four days last week. After everything going smoothly for a while, I start to forget how important certain pieces of the puzzle are.
After the doctor, I immediately gave her two sachets of ThreeLac. She had already gotten SaccB this morning. She complained again that her ear still hurt and went to take a nap. Got up after an hour; it still hurt a lot. Back down after just 5 mins. After another hour, she got up again and said that her ear didn't hurt as much.
If it continues to hurt her, gets worse, starts draining, etc., I'll likely go get the prescription filled before it gets out of hand. If it stops bothering her, I'll continue with the extra ThreeLac and her normal yeast fighters. Hopefully it'll clear up just by getting her back on all of her regular supps.
Science Reveals that a Rare Mushroom is the Secret for Longevity and Health!
Did you know there are people who have lived to be over 100 years old without developing any of the degenerative effects of aging? It's true, but their longevity didn't happen by accident. They had a secret weapon: the powerful Agaricus Blazei mushroom.
This mysterious mushroom was discovered in the mid-twentieth century by Japanese researcher Takamoshi Furumoto while observing an obscure tribe in Piedade region of Brazil. He was amazed when he found that an unusually large number of the tribe members lived to be well over 100 years old without suffering from the usual age-related afflictions. Upon investigation, he discovered their miraculous health and longevity was attributed to a special mushroom the tribe called "Cogumelo de Vida" or the "mushroom of life."
Further research revealed that the reason this mushroom, named Agaricus Blazei by scientists, has such life-extending power is that it's rich in beta glucans, which improve the body's defense against foreign invaders. They do this by enhancing the effects of macrophages, neutrophils and Natural Killer cells (NK cells), which protect against a wide range of physical challenges.
Because this amazing mushroom has proven to stave off such a broad spectrum of conditions, its discovery is considered as significant as the invention of penicillin. In fact, it's sure to revolutionize medicine as we know it. That's why Waiora is so proud to offer the age-fighting power of the Agaricus Blazei mushroom in its new product, AgariGold with H1X1.
AgariGold with H1X1 features a patented blend of the Brazilian Agaricus mushroom with another powerful Agaricus strain, which has resulted in a hybrid more potent than the original Brazilian Agaricus alone. This unique and highly powerful hybrid has been combined with Sasa Bamboo, possibly the world's most efficacious antioxidant, to create Waiora's groundbreaking AgariGold with H1X1. The result is a revolutionary life-enhancing superfood that also contains amino acids (including the essential eight that our bodies can't manufacture), vitamins, minerals, antioxidants, enzymes and essential fatty acids.*
It's a powerhouse of nutrition in just a few drops a day. Go to http://www.agarigold.com/ to find out more today! * These statements have not been evaluated by the Food and Drug Administration. These products are not intended to diagnose, treat, cure or prevent any disease.
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