Demi Learns to Ride!

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!

(Demi is 7.5 yo.)

June Update

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).

Demi's Ditty

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.



Tell me what you think!

Esophoria and Kabuki

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.

Supplements Need More Recognition

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!!

Bilateral Otoplasty

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.

The reveal:

The Slimy Ear

How pleasant! Attempting to clean slime out of an ear while it keeps slipping off the q-tip. Yes, a lovely image, I know.

I've mentioned Demi's ear infection saga before, although I was surprised I hadn't related the whole story. Last month, her ear started leaking again. It thought it was another perforated ear drum. This time, we got to the Dr a little sooner, so there wasn't as much fluid in the ear. They dx'd it as Swimmer's Ear, since the ear drum did not show a middle ear infection. (Ok, that's good!) They gave us the same ear drops as before to use for 5 days.

The leakage continued as we used the ear drops but seemed to subside, so I stopped the drops. A few days later, the leakage was back. Perhaps I didn't use the drops long enough? I continued them for longer; it seemed to subside; I stopped; it returned.

Recently, I read some posts on the awesome Kabuki Support Network that I follow daily about fungal ear infections. One mother described an infection that "leaked slime down his neck constantly" which sounded exactly like Demi's issue. It certainly didn't look like any swimmer's ear that I had ever heard of, since it drained constantly, coating her hair, cheek, and neck at night (until we stuffed her ear with cotton 24/7).

After going online, I learned that the ear drops used to treat Swimmer's Ear could actually make a fungal infection worse, which also coincided with Demi's symptoms. It also said that 95% of fungal ear infections responded to standard OTC athlete's foot remedies. We'll try that for a bit, along with bumping up her anti-yeast protocol in general, and see what happens.

Alternative Medicine

Close to a month ago, I took Demi to a local alternative health practitioner. A super nice lady. She explained everything about the machine she was using and answered all my questions. I had no misconceptions of what she might be able to do.

I went because I'm open to alternative methods of attaining health. I don't believe conventional medicine knows everything about the energy of life within each human being.

The testing revealed some interesting possibilities that might be going within Demi's various systems. Over the course of the testing, she "treated" Demi periodically with the machine, a process similar to "reverse biofeedback." Perhaps it sounds hokey, but, like I said, I'm open to the possibilities.

Among other things, the testing revealed insecticides contributing to her toxic load. It did not show specific heavy metal toxicity. It also revealed consistent stomach problems which can often contribute to imbalances in other organs. The insecticides and stomach issues showed up as part of every organ analysis, so I elected to start a homeopathic remedy for the insecticides and digestive enzymes for the stomach issues.

Interestingly, the test also hinted at possible blood sugar regulation issues, something she has never shown signs of. She has even had a normal fasting blood sugar analysis. The test indicated that the pancreas might be under stress.

That's interesting to me because kids with Kabuki sometimes have blood sugar issues, largely masked until a crisis arises. One child even had undiagnosed hypoglycemia which subsequently led to her death following a routine surgery.

Just recently, I learned that another Kabuki kid (18yo, I think) was recently diagnosed with Type I Diabetes, where the pancreas shuts down insulin production, possibly caused by a virus. Could this test be indicating the very beginning of a problem where I could head off the onset of diabetes? That's a stretch, but a possibility.

Although the treatment could have positively impacted Demi's learning abilities and attention span, I have to say that I have not seen that (even through my rose-colored glasses). But I still believe the supplements we're giving her are helping, although very slowly.

The treatment did seem to coincide with a sudden onset of fatigue, fever, and general illness. Prior to the test, Demi was already suffering from a cold. Following the treatment, she became exceptionally tired and missed two days of school - lots of congestion and fever. I took her to the Dr during that to make sure her ears weren't infected again.

Even though the machine's treatment did not seem to help Demi's main issues, it seemed to have some very interesting insight into Demi's holistic health. The health practitioner was very sincere and involved during the entire 2.5+hr appt. I value her advice on supplements

I'll be sure to post with any additional developments in this area.

Beautiful Moment

I spend so much time trying to "fix" Demi (to HELP her!) that I often lose sight of what a beautiful child she is, regardless of her abilities.

The other night, DH and I were watching a movie. Dana was already in bed (voluntarily!). Demi was flitting around the house, talking to herself, usually replaying some sort of fictional dialog, usually related to some recent experience. She seemed totally oblivious to us as she roamed from the living room to the kitchen, dining room, and back to the living room, playing the continuous dialog.

DH muted the TV and we focused on Demi, just watching her. She didn't stop her dialog. She seemed aware that we were watching her, but it didn't bother her. I listened to her dialog and thought it was quite creative and cute. True, a "typical" 6yo would not behave that way, but watching her brought a smile to my face because she was just being Demi. Viewed without the "expectation" filter, she was just enjoying herself, relating an interesting story. Very cute.

She's kind, friendly, happy, funny, cooperative, trusting, without a trace of viciousness or guile or ill will towards anyone, including her sister (despite some occasional underhandedness on the part of her sister). A beautiful person, inside and out. I'm so blessed to be her mom.

Detox Symptoms

Almost two weeks later now (my, how time flies through the holidays!).

Less than a week after the last post, Demi had been taking usually 10 drops 2x/day of cellular zeolite, just because I was forgetting the third dose. Last Friday, she suddenly came down with cold-like symptoms - runny/snotty nose, coughing, tired, red eyes. Her eyes got more red on Saturday and by Sunday, I was convinced it was pink eye. Luckily, we had some leftover drops to use, so it didn't get too bad and didn't infect her sister. She is still coughing a bit and has laryngitis.

A couple of other mothers over at AutismNCD mentioned seeing very similar symptoms, so I strongly suspect that Demi is getting detox symptoms from the increased dose. It just took 1.5 weeks to show up. If that's the case, I guess I need to back off the dose a bit so she can get back to normal. It's no fun being sick, even if you're detoxing and not really sick.

We also ran out of ThreeLac a few weeks ago. I wasn't sure it was helping that much, since I wasn't totally convinced Demi had a yeast problem. Lately, I've been noticing that she doesn't listen very well. Could that be part of the equation, too? It's difficult figuring out what works, what doesn't, what works with what, etc, etc. It's all a balancing act and you're never quite sure what things you're supposed to be balancing.

Oh, by the way, did I mention that I've partnered with Team In Training and will be running the ING Atlanta Marathon (yes, that's 26 miles. ugh!) in March. All donations go to the Leukemia and Lymphoma Society for finding a cure for those diseases. Check out my TNT website for training updates (14 miles scheduled this weekend) and to donate.