A couple of things have gotten me thinking about our situation the last couple of days: Barack Obama and Ed McMahon.
First, the heavy stuff. President Obama's plan for health care, while noble, scares me to death. I will be the first to admit that the hurdles we have faced in dealing with William's therapy have been mind-numbingly difficult. The bureacracy and slow response at even the county level of government is truly a wonder to behold. But, on the flip side of that, Nickie and I are the ones making the decisions about what therapies to pursue. (Well, mostly Nickie, but we'll get to that in a bit.)
Everything I have read indicates that in a single payer system, the first thing to get cut back on is physical therapy. Think about this - if coverage for therapy for an 35 year old recovering from knee surgery is extremely low, what chance does an otherwise physically healthy young boy have of getting much needed (in the eyes of his parents) physical, occupational, music, hippo, water, and behavioral therapies? Sounds pretty gloomy to me. I am sure we'd probably be able to still get it, but the government won't be paying for it, even though my taxes will go up in some shape or fashion to support universal healthcare.
Don't get me wrong. I love the idea of a system where we show up with William, have his needs met, it's covered, we sign in, and everything's grand. But I am also a realist. It took Nickie months to get the paperwork lined up for the medicaid waiver William is currently on. Multiple phone calls a day, lots of tears (by both of us), stress, and anger. I am not optimistic about a new system run by Washington. My preference would be to let me keep my money and decide what to do with it.
Which brings me to the second inspiration for this entry. Ed McMahon just passed away, and I was thinking about how he was famous for pretty much doing nothing. He was a good guy, did was he was told, supportive of his front man, and didn't cause any trouble. That got me thinking...
Hey, I am Ed McMahon. (How's that for a Nike commercial?)
Nickie has been a rock-star super-hero in getting William the things he needs. (in addition to all the other kids) Between therapists, doctors, diets, probiotics, supplements, casein free/gluten free food, camps, money, Douglas County, and the State of Colorado, she has feverishly worked her tail end off to get it all done. What do I do? Help. Drop people off somewhere, pick them up somewhere, fax something, mail something, make dinner, and give her a hug sometimes and tell her there's nothing more she can possibly do today.
I am Ed to Nickie's Johnny Carson. (Although I doubt Ed and Johnny hugged much.)
"You can't imagine hooking up with a guy like Carson," McMahon said in an interview in 1993. "There's the old phrase, hook your wagon to a star. I hitched my wagon to a great star."
Couldn't have said it better myself.
Wednesday, June 24, 2009
Thursday, June 18, 2009
Summer Blessings
Two posts in one week! Miracles do happen;-)
My last entry explained the anti-yeast treatment William was on. His eczema had finally disappeared, so we were given the go-ahead in discontinuing Diflucan. Fortunately, or unfortunately, during that week, his eczema returned. I can now see that this was a blessing, because it unveiled several issues...
Shortly after restarting Diflucan, William's hair began falling out. We upped his topical Glutathione (for liver support), added NAC (which helps the body naturally produce Glutathione), added Mucan (a homeopathic anti-yeast remedy) to his chlorella & biocidin anti-yeast regimen. We continuted the supportive supplements, enzymes and probiotics he's been on for the past couple of years.
Fairly simple. But at the same time, his IGG food panel results showed new reactions to almonds and white rice. So now off casein, gluten, almonds, peanuts, soy, vinegar...and SUGAR (obviously a major player in the candida/yeast overgrowth/eczema recurrence), a couple of things became clear: A) we were not "rotating" foods like we were supposed to, and B) we were not keeping his sugar intake below 10 grams per day.
This was when I panicked: 2 years of intensive biomedical treatments, dietary restrictions, therapy, major bills...we hadn't done enough...NO PROGRESS????
*DEEP BREATH*...We could do this. All the work up to this point showed us we were totally capable of handling this new knowledge as well as this truth: William's body needed us to dig in a bit deeper.
So, 2 months later...he is now eczema-free! Did you know a half cup of organic grade B maple syrup has 36 grams of sugar! John puts fresh squeezed lemons in pancakes now, so we can avoid the syrup issue...we use Birch Tree Xylotol for sweetener, and only 1 piece of fruit per day. Anyway, we are very happy about this victory, however the food issue remains.
So, my latest plan is a visit to a group called, "Inspired". They perform a hybrid kinesiology/NAET program which literally clears allergens in 95% of cases. Dr Devi Nambudripad's book, "Say Good-bye to Illness" tells the story. I'm anxious to see how this works for William. We're not looking for the infamous "cure"...but we do seek to uncover William's best possible health.
We are increasing Will's cranial sacral therapy, Relationship Development Intervention, taking an r&r trip for ourselves (J & I) to France, and then sending the little man off to Kindergarten August 5th! He has qualified for a full time paraprofessional...who happens to be the head special ed teacher at Fox Creek Elementary. We are extremely grateful for this blessing. Not only will he be in good hands at all times, but the special bus will come to our front door for pickup and drop off, and William's friend down the street will be in his classroom...instructed by a magnificent teacher. His big brother will be just down the hall in 2nd grade...that's another preparatory we'll be working on...but hopefully a source of comfort for both boys.
As the summer moves on, we hope to reconnect with William's favorite swim teacher, Russ, who has moved on from Safe Splash; we hope to find plenty of hours playing ball with Zoey; we hope for some time on the Rowe farm hanging out with the sheep, lama, cats, and riding horses; we look forward to the Oberhauser family welcoming Will and his sibs to their farm-life for 10 days. We hope for healing and silly behaviour, and good times spent with friends....and all the blessings that come with summer.
Nickie
My last entry explained the anti-yeast treatment William was on. His eczema had finally disappeared, so we were given the go-ahead in discontinuing Diflucan. Fortunately, or unfortunately, during that week, his eczema returned. I can now see that this was a blessing, because it unveiled several issues...
Shortly after restarting Diflucan, William's hair began falling out. We upped his topical Glutathione (for liver support), added NAC (which helps the body naturally produce Glutathione), added Mucan (a homeopathic anti-yeast remedy) to his chlorella & biocidin anti-yeast regimen. We continuted the supportive supplements, enzymes and probiotics he's been on for the past couple of years.
Fairly simple. But at the same time, his IGG food panel results showed new reactions to almonds and white rice. So now off casein, gluten, almonds, peanuts, soy, vinegar...and SUGAR (obviously a major player in the candida/yeast overgrowth/eczema recurrence), a couple of things became clear: A) we were not "rotating" foods like we were supposed to, and B) we were not keeping his sugar intake below 10 grams per day.
This was when I panicked: 2 years of intensive biomedical treatments, dietary restrictions, therapy, major bills...we hadn't done enough...NO PROGRESS????
*DEEP BREATH*...We could do this. All the work up to this point showed us we were totally capable of handling this new knowledge as well as this truth: William's body needed us to dig in a bit deeper.
So, 2 months later...he is now eczema-free! Did you know a half cup of organic grade B maple syrup has 36 grams of sugar! John puts fresh squeezed lemons in pancakes now, so we can avoid the syrup issue...we use Birch Tree Xylotol for sweetener, and only 1 piece of fruit per day. Anyway, we are very happy about this victory, however the food issue remains.
So, my latest plan is a visit to a group called, "Inspired". They perform a hybrid kinesiology/NAET program which literally clears allergens in 95% of cases. Dr Devi Nambudripad's book, "Say Good-bye to Illness" tells the story. I'm anxious to see how this works for William. We're not looking for the infamous "cure"...but we do seek to uncover William's best possible health.
We are increasing Will's cranial sacral therapy, Relationship Development Intervention, taking an r&r trip for ourselves (J & I) to France, and then sending the little man off to Kindergarten August 5th! He has qualified for a full time paraprofessional...who happens to be the head special ed teacher at Fox Creek Elementary. We are extremely grateful for this blessing. Not only will he be in good hands at all times, but the special bus will come to our front door for pickup and drop off, and William's friend down the street will be in his classroom...instructed by a magnificent teacher. His big brother will be just down the hall in 2nd grade...that's another preparatory we'll be working on...but hopefully a source of comfort for both boys.
As the summer moves on, we hope to reconnect with William's favorite swim teacher, Russ, who has moved on from Safe Splash; we hope to find plenty of hours playing ball with Zoey; we hope for some time on the Rowe farm hanging out with the sheep, lama, cats, and riding horses; we look forward to the Oberhauser family welcoming Will and his sibs to their farm-life for 10 days. We hope for healing and silly behaviour, and good times spent with friends....and all the blessings that come with summer.
Nickie
Thursday, June 11, 2009
No Matchsticks Today
Some notes on Summer so far...
William is doing very well these days. He is devouring, for lack of a better term, everything we are throwing at him. He's going to day camp (3 of the kids are), going to therapy constantly, riding a bike (with training wheels), and is constantly on the move. He even liked going to Sophie's gymnastics class so much that we considered signing him up. (Until we saw the price tag. Apparently gymnastics instructors are paid on the NFL pay scale) So, every day William wakes up and says "Nope, no matchsticks today." (No gymnastics today)
Most importantly, an important relationship is blooming in William's life. Our neighbors Shannon and Matz have a dog, Zoe, that has boundless energy equivalent to William's. We have spent many days and evenings watching the kids ride bikes, and watching William and Zoe play together, throwing the ball. Neither one of them seem to get tired of it. It is truly thrilling to watch. (Off topic, but in regard to previous posts about how William is always naked outside, Matz has pointed out that you can add "a naked Fowler kid" to death and taxes.)
I updated the video on Youtube today to allow for comments, I am not sure why I didn't allow it before, probably because every video I have ever watched on Youtube has the comments section degrade into some sort of nastiness completely unrelated to what the video was about. But, I am newly inspired to get more people exposed to Autism, and this is just a small step to get it done.
A couple of people have asked if we're going to be doing a fundraiser again this year. We talked about it, and decided against it, since almost everybody's hurting this year and it just didn't seem appropriate. We talked about writing up some sort of formal newsletter also, but that also doesn't seem to be materializing. Fortunately, the wonders of email, Facebook, and blogging are allowing us to keep people informed on what's going on.
There's still lots of tough days. We were at Evan's baseball game last weekend, and William was able to watch about 5 minutes here and there, but for the most part, he was more interested in going and looking for other things to do. I was coaching first base, and I couldn't help but wonder, will this kid ever be able to play any organized sports?
We still have a real bad time leaving anything that William is enjoying. If we leave a park before he is good and ready, (which is never) he has a meltdown of biblical proportions. His screaming makes dogs run for cover, and other parents look over and you can tell they are wondering if they should call 911.
William's diet is a major pain in the rear. Literally. In addition to all the foods he can't eat, we have to give him Vitamin B-12 injections in his butt every three days. He drops his pants like a trooper, and the pained, hurt look on his face after he gets his shot breaks my heart every time.
Then he'll lead you over to the counter, say "all done with that for today", and I wonder who is tougher in this equation.
Since the last post, there have been several nights when I was inspired to write about how a) wonderful everything is going, and b) crappy everything is going. But I've just been tired. I guess in the grand scheme of things that evens out and we're doing okay. You just keep going, get through it a week at a time, and the next thing you know it's time to go for Matchsticks.
William is doing very well these days. He is devouring, for lack of a better term, everything we are throwing at him. He's going to day camp (3 of the kids are), going to therapy constantly, riding a bike (with training wheels), and is constantly on the move. He even liked going to Sophie's gymnastics class so much that we considered signing him up. (Until we saw the price tag. Apparently gymnastics instructors are paid on the NFL pay scale) So, every day William wakes up and says "Nope, no matchsticks today." (No gymnastics today)
Most importantly, an important relationship is blooming in William's life. Our neighbors Shannon and Matz have a dog, Zoe, that has boundless energy equivalent to William's. We have spent many days and evenings watching the kids ride bikes, and watching William and Zoe play together, throwing the ball. Neither one of them seem to get tired of it. It is truly thrilling to watch. (Off topic, but in regard to previous posts about how William is always naked outside, Matz has pointed out that you can add "a naked Fowler kid" to death and taxes.)
I updated the video on Youtube today to allow for comments, I am not sure why I didn't allow it before, probably because every video I have ever watched on Youtube has the comments section degrade into some sort of nastiness completely unrelated to what the video was about. But, I am newly inspired to get more people exposed to Autism, and this is just a small step to get it done.
A couple of people have asked if we're going to be doing a fundraiser again this year. We talked about it, and decided against it, since almost everybody's hurting this year and it just didn't seem appropriate. We talked about writing up some sort of formal newsletter also, but that also doesn't seem to be materializing. Fortunately, the wonders of email, Facebook, and blogging are allowing us to keep people informed on what's going on.
There's still lots of tough days. We were at Evan's baseball game last weekend, and William was able to watch about 5 minutes here and there, but for the most part, he was more interested in going and looking for other things to do. I was coaching first base, and I couldn't help but wonder, will this kid ever be able to play any organized sports?
We still have a real bad time leaving anything that William is enjoying. If we leave a park before he is good and ready, (which is never) he has a meltdown of biblical proportions. His screaming makes dogs run for cover, and other parents look over and you can tell they are wondering if they should call 911.
William's diet is a major pain in the rear. Literally. In addition to all the foods he can't eat, we have to give him Vitamin B-12 injections in his butt every three days. He drops his pants like a trooper, and the pained, hurt look on his face after he gets his shot breaks my heart every time.
Then he'll lead you over to the counter, say "all done with that for today", and I wonder who is tougher in this equation.
Since the last post, there have been several nights when I was inspired to write about how a) wonderful everything is going, and b) crappy everything is going. But I've just been tired. I guess in the grand scheme of things that evens out and we're doing okay. You just keep going, get through it a week at a time, and the next thing you know it's time to go for Matchsticks.
Tuesday, February 3, 2009
New Video
It only took me 9 months to get it done, but I finally got a video done of a portion of the presentation I made for William's fundraiser last summer.
Hope you like...
http://www.youtube.com/watch?v=Y45rIHxwqwQ
If you can, watch it with the High Quality setting turned on, and turn up your volume a little bit.
Thanks,
John
Hope you like...
http://www.youtube.com/watch?v=Y45rIHxwqwQ
If you can, watch it with the High Quality setting turned on, and turn up your volume a little bit.
Thanks,
John
Wednesday, January 28, 2009
It's nearly February now, and I see John and I have been...well, "heads down" in life? I have to wonder if this is a good thing since "coming up for air", ie: blogging, in our case, is not as necessary when the air is plentiful. With that said, things are pretty good! But it wasn't the case for much of December and January.
We were somewhat satus quo early December when I visited the DAN! doc in Boulder. She was concerned the nystatin William had been on prior to the appointment, was ineffective. She proceeded to prescribe diflucan. This is a heavy-duty blood yeast detox. It's a bear trying to hide medicine (that tastes like medicine) in Will's food. Especially because his food is void of casein, vinegar, sugar, gluten, soy, and peanuts...basically he eats fresh fruits, veggies and organic meat. Where do you hide nasty tasting meds? Sadly, I've ruined his love for apple sauce..so I have to be very careful! Anyway, I did manage to hide crushed diflucan, as well as the charcoal which helps rid his body of dead yeast, in fig jam. Who knew?! As a result of a process known as Herxheimer reaction, he went into a behavioral tailspin. Therapists, teachers, and our entire family felt he'd fallen into a massive regression...more than a year's worth. So we all prayed. And prayed. And I called the doc "just" a couple of times- absolutely panicking! Affirmed we were on the right track, we prayed some more.
FINALLY, the little guy has begun showing us behaviors he's never possessed! This is just in the past week or so. It's a new delight for us, and so comes the purpose of this post. It's a celebration for trudging on. Moving forward when it appears that you're quite possibly moving backwards.
I actually pulled William off his special diet for a few weeks in the fall. It is absolutely exhausting for anyone trying to keep it up. God bless the families who battle Celiacs and the myriad of allergies that can piggyback the disease. Thankfully, a little nudge from my husband and my mom, and a lot of energy for our Lord, we jumped back on the right track. And, thankfully I kept the appointment to see the DAN! doctor. And thankfully we continued with William's medicine even through the crazy behavior and difficult reports from teachers and therapists. And thankfully God does not leave us. Thankfully He watches over William every minute of his little life.
Well, here's my cheers to all: To moving forward through difficult times; that in the end, if we keep our faith, all will be as it was intended; that we will be better for having lived the experience.
And so I find myself wondering if blogging is a "coming up for air" pass-time? I think John had it right all along...this blog is a celebratory moment of peace amidst continuous chaos. That which we call "Life with William". In all fairness, I'll need to add: et al." ;-)
We were somewhat satus quo early December when I visited the DAN! doc in Boulder. She was concerned the nystatin William had been on prior to the appointment, was ineffective. She proceeded to prescribe diflucan. This is a heavy-duty blood yeast detox. It's a bear trying to hide medicine (that tastes like medicine) in Will's food. Especially because his food is void of casein, vinegar, sugar, gluten, soy, and peanuts...basically he eats fresh fruits, veggies and organic meat. Where do you hide nasty tasting meds? Sadly, I've ruined his love for apple sauce..so I have to be very careful! Anyway, I did manage to hide crushed diflucan, as well as the charcoal which helps rid his body of dead yeast, in fig jam. Who knew?! As a result of a process known as Herxheimer reaction, he went into a behavioral tailspin. Therapists, teachers, and our entire family felt he'd fallen into a massive regression...more than a year's worth. So we all prayed. And prayed. And I called the doc "just" a couple of times- absolutely panicking! Affirmed we were on the right track, we prayed some more.
FINALLY, the little guy has begun showing us behaviors he's never possessed! This is just in the past week or so. It's a new delight for us, and so comes the purpose of this post. It's a celebration for trudging on. Moving forward when it appears that you're quite possibly moving backwards.
I actually pulled William off his special diet for a few weeks in the fall. It is absolutely exhausting for anyone trying to keep it up. God bless the families who battle Celiacs and the myriad of allergies that can piggyback the disease. Thankfully, a little nudge from my husband and my mom, and a lot of energy for our Lord, we jumped back on the right track. And, thankfully I kept the appointment to see the DAN! doctor. And thankfully we continued with William's medicine even through the crazy behavior and difficult reports from teachers and therapists. And thankfully God does not leave us. Thankfully He watches over William every minute of his little life.
Well, here's my cheers to all: To moving forward through difficult times; that in the end, if we keep our faith, all will be as it was intended; that we will be better for having lived the experience.
And so I find myself wondering if blogging is a "coming up for air" pass-time? I think John had it right all along...this blog is a celebratory moment of peace amidst continuous chaos. That which we call "Life with William". In all fairness, I'll need to add: et al." ;-)
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