Sunday, December 28, 2014

A guest post :)

I did part of a guest blog post over on Down Syndrome: A Day to Day Guide. The first half of the article is regarding seizures, our part is about half way thru! 

Seizures in the Down Syndrome Population: Information and Natural Treatment

Wednesday, December 24, 2014

In the news again! :)

Here is the news interview update on our fundraiser for Kaiden's speech device!
KAAL TV 6 ABC News Interview

Saturday, November 1, 2014

November 2014 update

Lots of new things going on!  We've had the speech device for 3 weeks now - the afternoon it arrived, boy did I get a lot of hugs from Kaiden!! Yeah, I teared up a lot! Now, he runs to the device when he wants to talk.  Or he'll occasionally bring it to me to talk, which is the eventual goal. 

I didn't get much of a chance to play around with programming the two loaner units we used, since they were kept at the school.  The one we were able to purchase (thanks to all the generous people that donated to our fundraiser!) is the Accent 1000; I didn't know it came defaulted to the Unity program rather than the LAMP program we'd worked with previously until just a couple days ago.  We had a meeting with a manufacturer (PRC) rep on Thursday, and she was able to show us side by side differences between the two programs.  They are very, very similar with Unity being the original, and LAMP being the evolution of that program. She then set up our device with the LAMP program, and as we talked about Kaiden and how far he's come, she suggested we skip the first and second stages and go right to the full blown, 3000 word program - which means a bit of re-learning for him.  The (touch screen) buttons are all still in the same place but now he needs to touch the first screen, and depending on what he selects, that brings up a related secondary screen (which can then bring up more screens, etc.)  I know he "gets" the two-screen approach; when he picks out what music he wants to listen to (on my PC), he touches the artist first (I click on the artist, it brings up their albums), then touches which album he wants.  This device is just so cool!  We can customize lists for whatever we want to work on, like a vocabulary builder, or simple things like a customized snack list with his favorites. 

I think we originally misunderstood how to teach him to use the device.  It starts with one-word access, and we did that to teach him the meaning of words, assuming he didn't know them (well, I thought he knew them but this was the recommended starting point), and also to get the motions associated with the word - both where the word is on the device and actions like "go", "in", "out" etc.  Here I and his SLP thought we'd just keep slowing adding more one-touch words - but with the rep telling us Kaiden is ready for full access based on the progress he's already made, we took the leap and went for it.  I'd also previously been told to not let him play with it; that too many words would overwhelm him.  The rep said, no, no, no! Let him play with it and get familiar with it!  He'll touch a bunch of stuff a bunch of times but he'll be learning as he does it.  It will still be months and months of training, and we have to learn how to use this program, too!

Next up - growth!  So far this year with the supplement changes (GABA + Cellular Energy, and managing his sleep cycle to calm his adrenals), Kaiden has grown a whopping 4.75"!  Considering he didn't grow much at all the last couple of years - this is great!!  As his doctor said, he might still be below the charts, but now he's following the growth lines which is fantastic!  As of last night he's up to 31.5lbs.  He is now tall enough he can put his snack plate in the sink when done and he feels confident getting in and out of the bathtub on his own.  He no longer uses a booster chair at the table, and can climb up into the chair by himself! With motor apraxia, climbing has been an issue (well, using his hands to assist climbing), and I'm looking forward to him being able to get into the carseat by himself. His head is still very small (hey, so is mine!) so we have begun cranial osteopathy to encourage head growth, reshape his flat spot (from how he slept as a baby) and to widen his palate.  The goal is to widen it enough so he won't need a palate expander!  Completely possible!!  I am really excited about this because palate expanders are expensive, and with Kaiden's oral sensitivities, he'd HATE having it in his mouth for months.  He already has one adult tooth in the spot where he was missing baby teeth, and this one adult tooth is pushing his baby teeth around.

Balance - one of the reasons I love being on the Review Team for New Age Mama blog is getting to try out products free in exchange for an honest review.  The latest item I was able to acquire for Kaiden is a Strider Balance Bike, the 12" Sport.  It's recommended for ages 18 months to age 5.  Kaiden is 5 1/2, but the size of a 3 year old so this works out nicely.  Balance has been a major issue for Kaiden all his life - made considerably better with one of our earlier Dr. Christopher tinctures (the Ear & Nerve Tonic), but not yet where it should be.  It took a few tries, but Kaiden has now mastered the first stage with the bike, Standing/Walking (and running!) - next up is Seated Walking - and I think he would have done that today, too, but we set the seat just a wee bit too high, so will be fixing that.

Eating - it's been a long three-year battle, but Kaiden is now 95% fully self feeding.  FINALLY.  He still does not hold the bowl to stabilize it with one hand while eating with the other. He does need help rounding up the last couple of bites (thanks to not holding the bowl!) but we'll get there.  Eating meals is SO much less stressful now.  I actually get to eat hot food. And use both my hands if I need to!  Or, if I'm not eating at the same time, I can get things done while he eats!

And, thanks to applying some of the principles from the SonRise program, I think Kaiden is mostly "recovered" from autism, with the exception of imaginative play.   I think he'd relate to other kids better if he could relate to how other kids play.

With all the changes this year, Kaiden has really blossomed.  I can't wait to see what next year brings!

Friday, September 26, 2014

We are SO close!!

Here it is, just after the beginning of the new school year.  I was hoping Kaiden would have his new speech device already - in fact, the original plan was to work with it over the summer so I could gauge whether or not he's ready for kindergarten.  We are very close to getting the speech device - it's been a long battle with insurance, too, as they gave us incorrect information for over 6 months - even with me explaining Kaiden's story every. single. time. I called to see where things were at.  Just earlier this month, BCBS (finally) let me know that the speech device manufacturer (PRC) is an out-of-network provider, meaning they weren't going to cover the amount above deductible . . . gee, it would have been nice to know that back in December of 2013 when I first called BCBS to see what we needed to do!  So after explaining Kaiden's story yet again and again (and again!!) BCBS pushed thru a waiver to pay PRC as if they were an in-network provider.  Okay. Then working with PRC, as they typically get paid up front - PRC was able to meet us in the middle - make a $5000.00 downpayment, and then get billed later for the remainder of our deductible after BCBS pays their portion.

So, fundraising needs met, transfer to bank complete, transaction pre-approved at the bank - all my ducks are finally in a nice neat row . . . I call to make the payment . . . and receive no call back.  Oh I get it, people are busy or take sick days or whatever - but it's just another little speed bump in this VERY long journey.  Head-desk.  Hoping today's the day!

So . . . where were we at - GABA.  The low-dose took about 2 months to finally push out all the histamine from Kaiden's system.  As of July, he has been completely diaper rash-free.  I bet he's as happy as I am about that!  I did try playing around with the GABA dosage again to see if it would help a few behaviors (Kaiden thrashes wildly when mad) and it looks like 1/16th of a capsule per day is his optimum dosage.  At least for now; things always change!

Verbal speech - as with every other word he's been able to say, it's incredibly rare for him to say "Mama" or any version of it anymore. I am sad about that, but it is what it is.  He seems to keep a word for a month, maybe two before it slowly disappears.  But the good news is, his fine motor skills have FINALLY!!!!! improved enough he's begun signing back to me!  We've tried sign language since he was 6 months old, on and off.  Imitating purposeful movements has been a huge obstacle for him.  He's now up to 8 signs he can repeat.  A few of them are not entirely correct (and we're still working on correcting them) but at least I know what he's asking for now!  We have been using word/phrase cards - just the word/phrase on a piece of foam board - and if he can't sign it, he will bring me the word card.  He *can* put 3 signs together to make a short sentence by himself without prompting, but it usually takes prompting or he'll just do the main word.

Growth - thanks to the Cellular Energy + low-dose GABA, he's still growing!  From the beginning of this year - with the growth spurt from messing with his kelp & thyroid and now the Cellular Energy & GABA, he's grown 3 - 4" in height and 4 shoe sizes. It almost feels weird to buy him new clothes as he fit into the same clothes for so long.  It still feels weird to pick him up and FEEL muscle tone on his little body.

I've introduced a few simple things gleaned from Raun Kaufman's book, Autism Breakthroughs (about the SonRise program) and it's really helped - I mean REALLY helped!  Kaiden's eye contact and social interaction is so much improved.  He wants to play with me all the time!  He doesn't run off as soon as we're outside.  The only thing I can still see is that Kaiden does not do imaginative play.  He reads, he loves hanging out in the boat while we fish, playing with toys or any object that make lots of noise, and toys/things that have lights, but just does not do imaginative play.  He likes to watch videos about imaginative play, but doesn't, as far as I can tell, do it himself, so he coupled with being non-verbal, he has a hard time relating to kids his age. 

Kaiden's doing another year of preschool this year, and we're hoping he'll be ready for inclusive kindergarten next year.

Wednesday, May 28, 2014

Almost the end of the school year!

And I still haven't decided whether Kaiden will attend another year of preschool, or attend kindergarten.  Right now it's set at another year of preschool, but they all know I may change my mind. 

Kaiden is doing FANTASTIC with the LAMP (loaner) unit at school - last session he spontaneously used it to say what HE wanted to say.  It was . . . one of the best sessions ever!!!  Kaiden had already selected which activity he wanted to do (have a book read to him), and as the SLP and I were chatting, Kaiden kept looking at me and used the unit to repeatedly say "Mama, read" to get me to shut up with the chatting and get on with the reading. Later we changed activities to blowing bubbles (he has to say "bubbles" or "more bubbles" to get the SLP to blow bubbles), and HE said "Mama bubbles" and giggled when I blew bubbles instead of the SLP.  Then as he grabbed at the bubbles to purposely pop them, he kept saying "my" and "my turn" - the closest he could come to saying "hey, look at what *I* did" because we don't have a lot of the buttons activated.  Slow going to build up his vocabulary when you only get two speech therapy sessions per week and there's been a lot of missed sessions in there due to either sickness or scheduling issues - both on ours and the SLP's end.

We are currently at almost 74% of our fundraising goal - how awesome is that???  SO MANY caring people have generously donated to help Kaiden get his own device!!!  We are still waiting on the insurance company, after 4 rounds of submitting paperwork and having the case escalated . . . still no answer.

On to the cortisol testing - had to collect his drool/spit at 4 specific times over the course of 1 day.  The first one had to be within 1/2 hr of waking.  He's just not very drooly that early - so we tried to do the gauze in the mouth part . . . not fun.  The other collections were easy - he loves to chew on his hands while holding a MegaBlock upside down, which makes a fantastic drool collector!  Just pour into the test tube and there you go.  The results took awhile to come in, and it was really neat to see the graph that came with it showing his levels for the 24 hours.  Definitely correlated with his activity.  He's restless at night, not getting anywhere good enough sleep, and does NOT sleep during the day.  Our current thought (medical team included) is that he's basically stressed all the time, like PTSD, so that's why he eats like mad - since his body is stressed from not getting any good sleep, his metabolism is thru the roof - he just burns right through food, which doesn't leave much nutrition left for growing.  Having the adrenals off balance will affect the thyroid (see the whole kelp issue a couple posts back), so we are opting to see if we can adjust his sleeping pattern.  We adjusted his supplements a bit - found  his tolerance for the new Cellular Energy supplement - he slept even less with this supplement, so I thought, since the Cellular Energy introduces more amino acids, let's try removing the Theanine.  THAT worked.  He finally slept thru the night for a few nights in a row!  YAY!!!

Since we now had a system that worked, then I thought, okay, this is the PERFECT time to reintroduce the GABA.  We'd tried GABA a couple years earlier - it made him frustrated, angry, and sleepless, but for some reason it cured a food-related diaper rash we'd been fighting for months.  It stopped the diaper rash for a year and a half, and slowly crept back.  I had been wanting to reintroduce it to see if it would kill off the rash again.  (His team says the GABA can push out histamines, so it's possible Kaiden had a histamine buildup, and the GABA pushed it out, thereby killing off that rash.) I thought it might take 3 days or so, like last time, and I could deal with a frustrated angry child for a few days.  I tried it at a lower dosage though - about 1/4 capsule.  When we first tried it last time, we started at a full capsule and went lower and lower and lower to see if that would help with the anger, frustration, & sleeplessness, which at that time, it didn't.

And . . . instead of having an angry frustrated sleepless child, Kaiden became even more connected!  He didn't sleep as well though, so I tried lowering the dosage to between 1/16th and 1/8th capsule.  THAT worked!  He's so connected it's like having a completely different child, than Kaiden when he was off the kelp.  Total 180.  It's as my best friend says about typical 5yr olds, it's like at age 5 they grow a brain and start to behave!  He is just . . .amazing.  At that low dose however, the diaper rash is less but not gone.  Hoping that continued use of GABA will eventually do the job.

Before starting the GABA, but after starting the Cellular Energy - Kaiden gave me the BEST Mother's Day present EVER!!  He started saying "Mama" with intention!!!  It sounds more like "ah-ma-ma", and he can't seem to do it loud, it's very soft, but he's saying it appropriately to get my attention!  The tradeoff though, seems to be that he's lost all other consonant sounds for the time being.  Now, the only thing he says is "Mama" (or some version thereof) and very few vowel sounds.  Nothing else.   But, hell, I'll take it. :)  I don't know how long he'll be able to keep saying it - he has spontaneously said a few words here and there, one for about a month, then gone, not repeated in years.  I keep encouraging him though, telling him how much I love to hear him say "Mama".  Going back to the last post with Raun Kaufman's book - the Son Rise program approach really DOES work!  Kaiden's eye contact and social interaction is sooooo much better!  I can't say it was only the approach, or only the supplement change, I think it's all of it combined.  Either way, this Mama's a pretty happy camper!!

Friday, March 28, 2014

Onto the next step

Finally got all of Kaiden's thyroid results back.  The TSH dropped, but is still a little high.  Everything else fell within "normal" ranges. His Free T3 is at the low end of normal, but the ratio between the Free T3 and Reverse T3 was great. We've now seen what happens when Kaiden is off kelp, and it's . . . not pretty. I had that gut feeling the kelp was doing something but I had absolutely NO idea it would be so dramatic!! Off kelp, his thyroid #'s began to normalize, and he had a huge growth spurt, but at the major cost of cognition.  Which is really the opposite of what should happen . . .but this kid . . . he's just so darn super sensitive to everything, and reacts opposite to so many things . . . wonder if I'll ever figure it all out!!  He actually showed more signs of being hypothryroidic when his #'s were mostly-normal than where he was before - because aside from being physically tiny, he previously didn't show ANY symptoms. 

I did want to note, since I've been watching it now for 3 weeks: off the kelp, Kaiden's lymphedema flared up with a vengeance 3 weeks ago; it got his left hand, pinky of his right hand, and now we're up to two toes on his right foot.  We've been treating it all winter with cold laser therapy, and that's been working really well . . . until being off the kelp.  It didn't recede right away as usual as has been the case with this winter's treatment.  It didn't recede much AT ALL!  3 week later, his right pinky is fine, but his left hand and right toes are still discolored and swollen. Apparently iodine plays an important role with lymphedema . . .  Kaiden's been back on the kelp for 2 weeks now.  He's certainly perkier, much better attention span, back to chattering, but we're still seeing some self-injury behavior, albeit less. I figure it took 4 weeks for him to go down, so maybe it will take 4 weeks to go back up.  It was nice to see that he could sit for 25 minutes working with the speech device in therapy yesterday instead of only being able to sit for a minute or two, preferring to run around the room throwing everything he could get his hands on when he was not himself off kelp.

So what's the next step?  Between myself and his medical team, we've decided the best course of action is to keep him on the kelp and leave his thyroid alone for the time being, although we'll keep an eye on it. Next up is cortisol testing for his adrenal system, and a new supplement to try.  His medical team has been thinking for awhile that Kaiden has a mitochondrial disorder, and the new supplement will help support that.  The cortisol testing will be interesting . . . it's normally a spit test.  Kaiden can't spit, but he sure can drool, so it will be up to me to collect that 4 specific times over the course of 1 day - unless we can do a swab test, which might be easier for collection.  Waiting for a call back from the test kit manufacturer to see what our best option is given our situation.

And I'm quite sure there are certain people out there who think this is the worst plan of action there is . . . but since they haven't spent the last 5 years researching things specifically for THIS child, realizing he just doesn't fit any sort of typical mold for anything, especially not Down Syndrome . . . let me just say that anyone who doesn't believe me, or believe in what we are doing for him, can come spend time with us (at their expense, of course) for a day, a week, a month, whatever.  Unless you're blind (and I don't mean physically), you'll change your mind after meeting and spending time with him ;-)

Which brings to mind another point: Here I've been thinking this blog would be helpful for other families with a child/children with Down Syndrome . . . but it seems the more I learn, the more I find that Kaiden just doesn't fit any mold - and especially not that of Down Syndrome.  It's not just about having an extra chromosome, but that chromosome mixed in with all the other genetic material and it makes for an endless combination of variations.  I'll still keep up with this blog; I like to document this journey with Kaiden because I find it fascinating.  Scary at times, yes, but fascinating!  And if together we can help just one other person, the documentation is more than worth it. 

A couple bright notes:

April 2nd is Autism Awareness day, and PRC is offering the LAMP system app for the iPad at 50% off for that day only.  While we don't yet have an iPad, we're planning to go ahead and purchase the app anyway. Worst case scenario - if we fail to raise the necessary amount for the speech device that would work best for Kaiden (we're almost at 60% of our goal!), the funding we already have would cover the cost of the app and the iPad.  Best case scenario, if something happened to his speech unit and needed fixing, we'd at least have a back-up plan in place.

Thanks to being a product reviewer for a large blog, I got my hands on a copy of Raun Kaufman's Autism Breakthrough book.  It's about the Son-Rise program, and let me tell you it is fascinating reading!  Take what you think you know about autism therapy and do . . . the opposite.  I'm only a few chapters into it, and tried "joining" today with Kaiden . . . I don't think I've ever seen so much eye contact from him, and the laughter . . . followed by better behavior and (non-verbal) communication for the next few hours!  Can't wait to read the whole book, then research their website for all the details of the program!

Wednesday, March 19, 2014

Kelp, what are you doing??

Right, so last update in mid-Feb Kaiden had been off kelp since the end of January to see what it effect it had on his thyroid. 

Off the kelp . . . for about 4 weeks Kaiden was fine.  Then he brought home a really super nasty cold virus (which he shared with me . . .) and for the 5th week, I couldn't tell if it was just him being sick, or if it was being off the kelp that wrought a change in him.  He was tired, puffy eyes, crabby, unhappy, no focus, "dull" look, eyes half open, an emotional mess and TERRIBLE self injury behavior (SIB).  And of course, this was right when we had our news feature . . . prompting lots of people to contact me with helpful info assuming this is what he's like all the time, which he's NOT!!!!! Seriously I cannot stress that enough, what he looked like in the news video is NOT what he's normally like.  It was great exposure that I couldn't turn down for the fundraiser, but terrible timing for the world to see what our little boy is capable of.

Onto week 6 . . . the virus was mostly over, but those symptoms didn't go away.  I even noticed what I thought was a tiny bit of swelling in his neck.  Since I was watching for thyroid issues, I had his thyroid retested sooner rather than later.  While we're still waiting for his Reverse T3 to come back, his TSH dropped a bit, and the rest was all normalized into acceptable ranges.  And he grew 2" in height, gained a pound, and 1/4" in head circumference.
Wait . . . what??  Take him off the kelp and he grows?? Like a major growth spurt for my tiny child?? Okay, so it was affecting him.  But it was also playing a significant role in his cognition.  After the retest, I reintroduced the kelp, at half the dosage I was giving him, to see if that would bring him back to his normal sassy sweet self.  And in about a day, he was happy, more focused . . . But that half dose didn't last him 8 days (previously getting 1 little scoop every 8 days).  By day 6, he was such an unfocused, unhappy, self-injuring emotional wreck (and I mean self injuring to the point he should have been wearing a helmet, he is so bruised up!!) that I gave him another half dose.  Seeing some good improvement, I gave him another half dose on day 7 (to put him back to the amount I had been giving him prior to January's test) and within a few hours?  Back to calm, happy, focused, self entertaining, reading books.   A HUGE, remarkable difference in 24 hours. 

During this time, I also tried removing his evening primrose oil to see if that had any effect on the SIB, and it hasn't, so I'll be reintroducing that.

Now . . . the evening of March 16th . . . with the full moon . . . and the fish oil protocol . . . and who knows what else . . . I swear I heard him talk in his sleep again.  I haven't heard him talk in his sleep since March of last year.  Three times last year I heard "too hot" as I heard him kick off his covers, "sister" (no idea on that one), and "too early" around 5am one morning.  This last time, I woke because he whimpered then started coughing.  And as I drifted in and out of sleep (his coughing will keep me awake), I heard "I want my Daddy" and then later "I love you Dad".  Now, I know my husband didn't get up and go in there . . . since being on the fish oil protocol, Kaiden's started making consonant sounds again and no longer bleating, so hopefully this is also part of the progress with fish oil.  And I really hope I didn't just dream it; it was too real, too lucid.

So my question is . . . What's in the kelp that is affecting him?  What is keeping his cognition up?  What's keeping him from growing?  If I could find something to keep him so focused that would also allow him to grow . . . that would be ideal.  But I've got to figure out what's doing what.  So far, my research has turned up nothing of real use; there's a lot of conflicting information out there regarding kelp and its nutritional content.  I suppose this is kind of like the sweet potato situation - I have absolutely NO idea what's in sweet potatoes that triggered his benign myoclonic seizures (infantile spasms) . . . there's just nothing out there in the internet world that I can find to make that connection, but it doesn't stop it being true for Kaiden.

Saturday, March 8, 2014

We made it onto the ABC News! :)

Our fundraising efforts have made it to our local KAALtv ABC 6 News!

During the interview I did talk about the seizures/food connection, but they have limited time for their segments, so that part didn't make it into the final video.  Ah, well, someday!!

Tuesday, March 4, 2014

Non-verbal communication

We're waiting on another loaner unit speech device for speech therapy at school, hoping it's in by next week.  Having worked with one for 6 sessions, he expects it to be there, and was really disappointed when it wasn't at the last session - already packed back up and shipped back for the next person.  I can't wait for when Kaiden can express himself fully!! He gets so frustrated not being able to do that and turns to banging his head on hard objects to vent his frustration, which of course, causes some lovely bruising.  Kaiden's online fundraiser is off to a great start!  We're currently at about 30% of our goal thanks to a lot of very generous people!!  Someone has even offered to organize and run a benefit for him should we need it!

I've been doing a lot of "Show Mama" with him, and now have to remember to say "Tell Mama" instead of "Show Mama" as another way to encourage speech (with or without the speech device).  I've mentioned before, maybe not here, but other places - Kaiden invented his own non-verbal language:

The how:
  • comes to someone, raises arms = pick me up; once picked up, will use carrier's arm as a joystick to indicate where he wants to go
  • pushes down on a seated person's knees to tell them to get up
  • gets behind standing person to push them in the direction he wants them to go/at certain objects
  • takes person by the hand and pulls them in the direction he wants them to go/at certain objects
  • takes person by the hand and pulls down to indicate either sit on the floor, or help with an object near the floor
  • brings objects to person he needs help with
  • brings books/flashcards to person he wants to read to him
  • brings toys to person he wants to play with (including the dog)
  • brings bib to indicate hunger/thirst
  • runs into the bathroom and closes the door to indicate the need for a diaper change (this one is about 75% consistent)
More specific:
  • snacks - brings bib to indicate hunger.  Pulls or pushes me into the kitchen.  Asks to be lifted up.  He can open the cupboard, take a plate out, close cupboard door, place plate on cutting board, open freezer (with a little help, it has a great seal!), take out his favorite bag of frozen fruit, place next to plate on cutting board, wait for me to prepare, helps carry full plate to table, brings me bib (if dropped on floor), tries (unsuccessfully) to climb into his chair, and can self feed his snack of frozen fruit.  Pushes me away to indicate he'd rather eat his snack alone!
  • brings bib to indicate thirst.  Depending on the time of day I may offer him water instead of a meal or snack.  He can take the sippy cup out of the (opened) fridge, drink, place cup back in fridge, and close fridge door.
  • meals - brings bib to indicate hunger.  He knows that a bowl = meal and plate = snack.  Depending on the time of day I may offer him a choice of meal or snack.  If I have a pre-made meal waiting in the fridge, I offer that to him.  He will push it away if it's not what he wants (doesn't mean that isn't what he gets!!).
  • mealtime - taps empty spoon on table or person, or looks at person to ask for help loading spoon, will feed himself as long as he has help loading each spoonful
  • pushes bowl away at mealtime to indicate dislike of a meal
  • pushes bowl away at mealtime to indicate he's done eating
  • indicates he wants a bath by pulling/pushing me to the stairs, I lift him over the gate, he goes up the stairs and into the bathroom to the tub.  Will throw his bath toys in the tub to indicate he wants to play in the bath for awhile.
  • indicates he wants to play in his room by pulling/pushing me to the stairs, I lift him over the gate, he goes up the stairs and to his bedroom, I lift him over the gate and he happily plays.
  • indicates he needs a diaper change while in his room by coming to the gate and throwing toys over the gate into the hallway
  • indicates  he wishes me to play or read to him by pulling/pushing me into the living room, pulling me down to sit on the floor, then brings me toys or books
  • indicates he wants to watch a video by pulling/pushing me to where the video he wants to watch is stored (videos stored on top of the piano or inside the TV cabinet).  If videos on top of piano, raises arms to say pick me up, then picks out which video he wants to watch.  If video in TV cabinet, pulls/pushes me to TV, pulls my hand down, and pulls my hand to the knobs on the TV cabinet, then picks out which DVD he wants to watch.  Once one is chosen, he can put the DVD into the DVD player (must be lifted, it's on top of the TV).
  • indicates he wishes me to vacuum the floor by pulling/pushing me to the vacuum and touching the on/off switch
  • indicates he wants to go somewhere (although I have no idea where!!) by pulling/pushing me over to his coat and shoes
  • indicates he wants to go to bed by either raising his arms to be assisted climbing in my lap, or pulls/pushes one of us to the stairs, goes upstairs and into our bedroom, where he likes to be cuddled to sleep.
  • gets out of bed at night to indicate thirst or a diaper change.
  • shows affection by touching his forehead gently to a person's cheek.  He had been doing this for quite a while before I thought to ask how he says "I love you".  This is the motion he consistently made upon being asked.
Kaiden has an excellent spatial memory.  No matter where or when he left something in the house, he can find it, even if I can't.  Also for where activities have previously occurred outside the home.

Most things, as long as it's his idea, he can do it, same with the aim of touch.  But to tell him to do the same thing, he can't.  Part of the motor planning process that doesn't work right with motor apraxia.  It's not that he doesn't want to, he just can't get his body to do it unless it's his idea.  I like to say it's like me and choreographed dance - cheerleading, line dancing, the YMCA, etc.  I can watch it all day long, but I can't get my body to repeat the moves, especially not in the correct sequential order; it just ain't gonna happen.  Now if I wanted to dance on my own, sure, I can do that.  But to watch someone else and try to follow?  Nope.

Now, there are things he can do upon being told.  Things like: come here, sit down, stand up, give it to me, go get your bib, put your bib/napkins on the table, go get the toy for Lola, pick up the toy(s) you threw, put it back, put it in, take it out, help me dress you, hand me the diaper pins, hand me your pants, socks, shirt, shoes, coat, mittens - same goes for removing coat, mittens, shoes.  He can help me remove his shirt, but not pants or socks.  If he's standing for dressing/undressing, he knows to use my shoulder for balance and lift each leg when prompted by a touch to the calf or back of knee. Sometimes he'll throw a 10 minute tantrum first, but he'll do these things.  My favorite new thing he'll do upon being told: give me a hug!  This one is huge for him; previous to this he would ask for affection by asking to be picked up, then cuddling, but would not return a hug nor spontaneously give one.  There's more, I'm sure I'm forgetting some of his non-verbal communication.

I have no worries about his receptive communication; he's a smart kid.  But it's frustrating for all of us, especially him, that he can only indicate his wants/needs.  He can't tell me if he doesn't feel well, or if something hurts, he's too hot/cold, or if he's sad/scared/confused/angry/happy/etc. (although some of that I can read his body language).  He can't point, wave, or sign, but he can touch.  His expressive communication is what we're trying to coax out.  And for that, until he's verbal (if he ever is), he needs the speech device. 

Sunday, March 2, 2014

Fundraiser Feature!

We've been featured again in the Albert Lea Tribune!  This time about the fundraiser for getting Kaiden his own speech device. :)  Thanks to some very generous people, we've raised just over $2K so far, but we still have a long way to go with a goal of $8K.  Every little bit helps!!

Link to article:

Link to fundraiser:

Sunday, February 16, 2014

Mother's intuition kicks in again . . .

I wanted to get Kaiden's thyroid levels checked again.  He does not show one single symptom of hypothyroid except that he is still very, very tiny and I just want to look under every stone.  At age 5, he is now finally just over 36" tall and a whopping 28.5 lbs dripping wet.  His head circumference is still very tiny, too, at about 18.5".  He is finally gaining weight though, with the right digestive enzymes, at a rate of about 1lb per month.  We had a couple of setbacks with gastrointestinal illnesses last fall but he's gained that weight back and continues to gain.

He hasn't had his thyroid levels tested for a couple of years because the last few times, his levels looked great.  This time . . . he has a high TSH and a very slightly low RT3, meaning he is slightly hypothyroidic (although, again, there are NO symptoms).   Kaiden's doctor recommended levothyroxine at first, but it contains an artificial dye, so that's off the table.  If we have to do thyroid meds, I'd prefer to use something along the lines of Nature-Throid.  He was on synthroid for a few months as an infant, but the endocrinologist felt Kaiden was tested at the wrong time after birth (something about how the levels fluctuate after birth) and that he never needed to be on it in the first place, and being on it sent his levels too far in the opposite direction.

As I was contemplating what to do . . . this nagging thought kept coming back.  I've learned, I better listen to that voice!  I've given Kaiden kelp for the last 4.5 years, ever since he was anemic at 6 months old.  I give him a tiny little scoop once every 8 days.  Although I know kelp should only be used for the short term as it can affect the thyroid, I was thinking once every 8 days should be a small enough amount that it wouldn't affect it, just be some occasional additional nutrition.  Except as he grew bigger, I increased the scoop from a slight amount to a half scoop, then to a full scoop, which is in the neighborhood of approximately 1/64th of a teaspoon.  And in the last few months, I've been ignoring that little voice that said, hey, does he really still need this?  Am I giving him too much?

I argued with the doctor - a lot -  over the suggestion of levothyroxine; I really, really, did not want to put him on a synthetic med.  Everything in me was screaming it was the WRONG answer.  I gave it a lot of thought; then finally listened to that little voice nagging me about the kelp and talked to the doctor again.  I love that he told me I am stubborn, and that it's a good thing!  I reminded him that Kaiden's been on synthroid before, and what the effects were.  And that Kaiden is SO incredibly sensitive to so many things - OTC calcium supplments (not plant based), OTC bromelain, the dosages of his amino acids, etc. At one point last year the doctor had suggested we double the kelp - although I cannot remember why at the moment - and doing that, Kaiden DID show symptoms of hypothyroidism. I suggested before we go with any thyroid meds, I need to listen to this voice and remove the kelp from his supplement routine.  Then retest in 3 months, and see what happens.

On to . . . diaper rash!  If you remember (or at least go way back in the blog) Kaiden used to have this nasty diaper rash caused by something in certain fruits.  We had a whole long list of fruits to avoid.  Lately, this rash has crept back.  It's nowhere near as bad as it was then; this is just one small spot, but it is a very stubborn spot.  It'll go away with my Healing Salve, but stop using it and it comes right back.  Back then, we tried giving Kaiden GABA for cognitive supplementation.  While it didn't work for cognitive issues - instead it made him frustrated, angry, and sleepless - it DID somehow cure that diaper rash within 3 days.  I have absolutely no idea why GABA took care of the diaper rash, none, not even the remotest, faintest idea beyond my thoughts from back then.  But seeing this rash come back . . . I'm considering putting him back on it for 3 - 5 days or so, at a very tiny dose, to see if it takes care of the rash again. I'll put up with an angry Kaiden for a few days if it means the rash will disappear for another year and a half!! Although, I sincerely hope Kaiden's not still in diapers that long . . . but until he can tell me that he needs to go instead of telling me that he's already gone, we're stuck with diapers. But, haha, that's okay.  I LOVE my fitted diapers!

Tuesday, February 11, 2014

Fundraising time!

Kaiden's been using a Vantage Lite (LAMP system) loaner unit in speech therapy and is doing fantastic!  He picked it up quicker than anyone thought he would (except me, LOL!!  I KNOW he's a smart little stinker!!).  But, since it's a loaner unit, it's time for it to be used with another child.  These speech devices, while fantastic . . . are not cheap.  We're talking a range of $6000 and up, up, up.  So . . . here we are . . . fundraising time!

Here is our GoFundMe page:  Please go check it out - donations of any size are immensely appreciated, as well as sharing his page via social media.  We're off to a great start, and are so blessed to have so many wonderfully caring people in our lives!

Thursday, January 23, 2014

Just clarifying . . .

With the recent articles published about Kaiden's story, I have received many wonderful comments, and people are really beginning to share his story! 

I do, however, want to clarify a few things.

In the first article published in our local Albert Lea Magazine, there was some incorrect information that unfortunately, downplayed the amazing things that happened.

  • they wrote that I first noticed Kaiden's sensitivity to nightshades when I started keeping a log of what he ate.  NOT QUITE correct - I had been keeping his food log for months, but didn't connect the dots until I realized I had to keep track of what I ate, too (because of breast milk).
  • they wrote that "eventually, in conjunction with a calcium supplement, his seizures stopped".  NO!! The calcium supplement had nothing to do with his seizures - it did not stop or slow them.  Trying the calcium supplement and seeing increased cognitive function is when I began looking into TNI (Targeted Nutrition Intervention).
  • they wrote that in 4 to 6 months, Kaiden excelled. NO!!!  In THREE short WEEKS, he gained 4 to 6 months in development.
  • they wrote the whole family is on the paleo diet.  NOT QUITE.  It's really just myself and Kaiden.  My husband eats what I cook here at home, but eats whatever he wants otherwise.

In the many very appreciated!!! shares, some are writing that going paleo "cured" Kaiden's seizures. 

This is not what happened. 

I mean, sort of yes, but not exactly.  This needs clarification!  "Paleo" has many different versions.  Paleo at its easiest, is being grain, dairy, and legume free.  There is also Primal (allows some dairy & nightshades), Raw (everything is raw, including meat, can also include nightshades), Auto-immune (eliminates nightshades, nuts, & eggs, as well as grain, dairy, & legumes), etc. 

I had Kaiden grain & dairy free about 5 months before the seizures stopped just simply because I'd read that with Down Syndrome, he was more likely to be gluten and lactose intolerant.  He was not legume nor nightshade free at that time.  It was solely dependent upon eliminating nightshades (and the carrots & sweet potatoes as discovered early on) that eliminated his seizures. It wasn't until seeing that Kaiden needed to be grain, dairy, AND nightshade free, that we went whole hog, so to speak (and yeah, slightly pun intended) with paleo.

I just don't want anyone out there thinking I'm claiming that "going paleo" cured his seizures, because I'm not, and I never have. There are many different versions of paleo.  Many are NOT nightshade free.  Carrots ARE allowed in all versions of paleo, yet Kaiden is sensitive to them.  Some say sweet potatoes are okay to eat as well on paleo, and some say they are not.  Kaiden is sensitive to them.

Kaiden is almost on the auto-immune version of paleo, with the exception of nuts.  He does just fine with nuts.  He is sensitive to eggs, too, so he gets limited quantities of those - and only if they are mixed into something else; he does not tolerate them by themselves.

Saturday, January 18, 2014

NRHEG Star Eagle: A Christmas Story of Love and Hope

We've been featured again!  I graduated from NRHEG, so this is the "hometown" paper, the NRHEG Star Eagle. :)  They did a fantastic job with this article - while I was immensely pleased to be featured in our local town paper & magazine, they did get a lot of the details incorrect so this has been a chance to get it out there, with the "right" story!

Please click to read:
Featured in the 2013 Christmas Edition of the 
NRHEG Star Eagle: