The last few days

The last day in the kitchen we were all trying to get rid of our food and make a couple of last dishes by combining a little of this with a little of that.  It was the first time Brody had a taken an interest in the boys around him.  I think Hudson was trying to Steam roll him(A move from Strange Brew, which we watched) and Ryan was trying to take his plastic bag away from him.  Brody's favorite toys consist of plastic grocery bags, or diaper wipe bags, he's real tough to shop for at Christmas,  "Look what I got for you, yes a bag from Target."  Hey he's a simple man,  anyhoo, it was really nice to see him interacting in some fashion with the other boys.  He did a fantastic his last few days.  Unfortunately, all of the kids had gotten sick within the last week and were at various stages of throat, stomach or lung problems.  I think Brody has a sore throat he's refused to eat the last 4 or 5 days, but he's still getting plenty of fluids and keeping a smile on his face.

The last day he received his improvement video a print out with his progress, and a written report to help continue the therapy at home.  As I mentioned before, the miracle from coming is hard work and consistency, just like anything else.  I was impressed with Brody's determination and his ability to try everything.  I always, wonder if he's a 4 year old stuck in a 7 month old body or a 7 month old stuck in a 4 year old body.  With the eyes and looks he was giving the teachers and myself. I'm pretty sure the kid has a wicked sense of humor and knows exactly what he's doing.   He would play the ladies.  I swear he probably got 50 kisses a day.  One time I recall switching out with Hudson(sometimes the kids would work better if they had someone knew helping them); they were all sitting and holding onto a bar in front of them.  So, as I was working with Hudson, Patty was sitting next to Brody,  not his favorite exercise.  First, he started to look up at her with those big brown droopy puppy-dog eyes and smile, and she finally caved in and gave him a kiss, then he would move his head towards her again and get another smooch.  Finally, I glance over and he is locked eye to eyer with her and has his head resting on his shoulder.  You know darn well he did the whole thing just to get a rest in by putting his head on her shoulder, but what're ya going to do, is sure was cute.

It was hard to say good bye to the families that were at the camp.  It's strange for five weeks we ate meals, shared food, diapers, diaper wipes, and a whole house together then just as quickly as it came together it evaporated even quicker.  The goodbyes were tougher on me then Brody, but I felt so bad for Hudson him and Ryan played all the time together and he was not a happy camper when it was time to say goodbye to Ryan.  I think Brody was sad to leave but even happier to be heading home.  I mentioned he would be seeing Jiji, Leah, Ari, Ryan and mommy soon and he started to smile.  Can't wait to see everyone and get back to the same old routine, something to be said about that!!  I think I read in one of my books that I finally received, something like this " a rich man knows he can always take time to make more money, but he can never buy more time."

Wicked Tuesday down!!

Yes, I know the last few blogs have been mainly about me and instead of the main attraction but remember this is a journey that we're all on and unfortunately, or fortunately you get my perspective with no filter.  It's very rare that a person can freely express him or herself without much feedback or influence from their prospective audiences.  So there! Let's get going!

 So last night after dinner I did see/learn about a newer device that is similar to the blue bulb suctions that we use to clean out noses/ ears, etc.  Now for the faint of heart skip to the next paragraph(  Ann if you're reading this please skip ahead, don't want you to get sick).  Anyways, I've never seen anything like this and neither has Brody.  It's a device used to help clean out your nasal passages. No it's not a Neti pot.  This device has two pieces one goes up the unsuspecting toddler's nose the other to a filter or catch as you might call it, with a hose coming out the other side. Yes, you guessed correctly that other piece fits into your mouth.  You suck the gross stuff out of the kids nose into the trap, which I'm told captures all the goo!  Huh! So I watched as one of the gals in the house swore by this device.  I suppose it worked but she seemed awfully thirsty the rest of the night :)  I've seen and done a lot of things for my kids, not sure I want to suck the snot out of their noses.  I'm just not that kind of guy I guess!  Everybody's gotta draw the line somewhere.

Tomorrow we shoot the final video and have the exit interview.  No class, which is probably a good thing, most of the kids are recovering from being sick and class is really hard on them.  I'm really looking forward to hearing what the teacher thinks we can do to continue to improve Brody's well being and what we can expect from him.   His strength has gotten so much better in such a short period.   This has not only been a journey for Brody in regards to strength and faith, but one of kindness and love.  He has felt everyone's compassion and prayers these last 5 weeks.  Brody would like to thank all that have followed along on this journey here and for the many prayers you have sent his way.  So, this is just the first of probably many trips and adventures we'll have as he progresses, and we thank all of you for coming along with us.  I hope we've been able to share with you our love for one another, and the joy this little boy has brought to our lives. His birth year had many challenges on our family, and for himself, but he has persevered through it all and is now one happy little boy.

This camp was something that we spoke about a year ago before deciding to come.  I'm glad the timing worked out the way it did allowing me to come and see first hand his progress and development.  As I said before, this isn't the first therapy/trip he's been on and probably not the last.  We have heard from  lot's of professionals, doctors, therapists,  evangelists, self-proclaimed seers, and a few others as to Brody and his potential.  In the end they were all pretty much right:  he'll do as much as he is willing to take on, and we'll see.    At one point I spoke with a gal from church and she told me that Brody was brought into our lives to help us get to heaven!  Never thought if it like that. I do have to say at four he's the only kid I can think of that probably has never sinned, pure as the driven snow!! Anyways, I always thought we were supposed to help show our kids the way?  But I think she was right he's helped myself and our family become more open and loving to one another, and more accepting of others.  Now mind you, we take a lot of what we hear with a grain of salt:   we've also heard from a psychic, who told us he'd be walking soon but then said Sascha would have child number 6 shortly(YIKES), we also attended a revival  in Hillyard, we tried cranial sacral therapy, and now the hyperbarics.   Yes, we've tried and been through a lot, but I can tell you this.  We will have a great time on this journey and it's only the beginning, and yes we will do some other treatment or unapproved therapy in the future and I'm sure I'll embarrass myself in some way, but in the end  we will try!!

Someday ask me about how the cranial sacral therapy went if you haven't heard?  The gals here sure got a great laugh about that one.  Thanks again and I'll see everyone real soon!  BTW major storm coming tomorrow, can't wait!!

WOW what a weekend!

We're getting down to the last few days here.  The kids as well as most of the parents are itching to get home and back to some resemblance of normalcy.  This weekend topped off the experience and made it one memorable night that'll bond us all here together forever.  At dinner, Ryan started turning purple, not sure why, might have been my cooking, but his mom thought it would be best to take him in.  Then a few hours later Rhett or as I call him the Favo RHett, was having trouble catching his breath and was becoming weak.  So Rhonda, took off with him to the hospital.  At about midnight Ryan and his mom and Dad came back, nothing out of the ordinary they gave him some oxygen and sent him home.  About 1am we received a call from Rhonda they were going to transport Rhett to Belleville, about 45 min away by ambulance, and Rhonda needed some medicine from the house.  Mark and I raced up to the hospital only to find that they already had left, so off to Belleville we went.  Felt a little like Balto crossing the frozen tundra to bring medicine to then Alaskan natives.  We arrived about 3am, and the Ped's dr wasn't in so after about an hour of waiting Mark and I headed back home. We did stop for coffee!!  Ten minutes out of Belleville and WHAMO!!!! We hit a deer going about 50mph.  Of course it hit my side of the car slammed into the hood and windshield then up and over the car it went.  And for the first time in my life I heard the sound of little hoofs on the rooftop!  Anyways, Mark swore and pulled over and got out to assess the damage.  At first glance I thought maybe I imagined hitting the deer, no broken windshield, no broken grill.  moonroof intact.  And no deer either to be seen.  When we got a little closer we noticed the front rt headlight was broken, but after that a couple hoof marks on the roof, a few on the trunk lid, and that was it. We hit a deer at 50mph and it rolled over our car and the car  was pretty much okay.  We did find the deer it was just off the road but it limped away when we approached.

Got home about 5am, then Rhett and Rhonda showed up shortly after that, they thought it was an asthma attack, and gave him some treatments and away they went.  One really long night and one really tiring day.  But nevertheless and unforgettable one as well.  See everyone soon.

Winter festival

I feel as we get closer to the end that I should be taking more notes or writing more frequently, not sure that's going to happen though.

 Seems like we're a world away and life's going on as we spend day after day doing the same routine.  It's like being in "Groundhogs day"  Which is coming up next week, maybe we'll get to go home after that?  GO Punxatawney Phil!!  This morning I learned that Rhonda from Mississippi is from a dry county.  The Canadians couldn't understand it, and really I can't either but then I told the story about when I got in trouble in High school so my mom sent me to live with my Aunt down south. And I told them this story...  If I recall, nobody told me much about the school so I was a little out of place had on a button up short sleeve shirt and a skinny leather tie.  On the way to school I was pulled over and the cops took my Quiet Riot cassette  disturbing the peace.  Anyways,   I  learned that the county had outlawed dancing and music. things weren't so bad, though,  I started to date the Pastor's daughter and my best friend and I decided to take it up with the school board to get our Prom back, I read some bible scriptures and the pastor eventually gave in.  A couple of fights with the locals, a tractor chicken race, and we were dancing.  I remember going to PRom and Yelling "Everybody let's Dance" and everybody starting cutting lose."  So at this point she said that sounds an awful like like the movie "Footloose"I said I don't know we were pretty famous down there and I heard someone might have made a movie about it. Don't know".  Then I started talking about something else, and you could tell she wanted to say something but didn't know if I was joking or not!  Sometimes, I tell jokes around here and I'm the only one laughing.

Today was the local winterfest, let's see bed racing ( see pic on the right)(left pic is my winding ribbon, yeah red is for first place here, honest). Adult trike races on the ice, some offshoot of curling done with logs, and a toilet seat game!  I think we'd call this a redneck picnic but I guess that's what they do around here when it gets cold. So back to therapy!

We had two tank dives today, and two tomorrow, not sure what happens to Brody in there, but all the kids are sleeping and he'll be wide awake kicking his feet then he'll drop a bomb on everyone.  Both times today we had to smell the wrath of Broden.

 This is the last week, so getting down to the end, and I don't think anyone could be happier, really tough being gone so long and removed from everything at home.  When I left we were just finishing the year and Christmas holiday was still going! Now when I get back 1/12th of the year will be gone almost 10%.  I think I'm starting to go stir crazy being stuck inside for so long.  Here I am typing a blog it's like the "Shining",  I looked into the mirror after Brody took a bath and I swear he said RedRum?  What's that mean?

Okay, so we quarantined the house today, a couple of kids are getting sick.  So I washed all the bed linens and all of our clothes, decided to do that at the laundry mat.  first time there.  Quite the place to really get to know the local folk. Found out which machines to use from a toothless chains smoker, real nice guy.   I know, I know,  this blog is dedicated to Brody, and he's doing extremely well,  I think people are going to notice a difference and we've only been here five weeks.  I guess it shows the potential he could have if we can continue to push and challenge him.  Wednesday, we're doing the after videos, which they'll give us a copy of, so looking forward to seeing how much he's improved.  Hopefully, I can post that to youtube so all can see.     Adios!

almost there!! Cutting it close!!

I know I was complaining or more commenting on being one of the girls and I needed more guy time, etc.  Well we'll come back to that later, but today was probably the best day for all of the kids in the camp.  We went through stretching, lying, sitting, and standing with barely a peep out of any of the kids.  Remember, one of the first posts the kids screamed the entire day and today was simply amazing watching these kids follow along. 
I do have to say I was extremely, concerned, scared, apprehensive about the hyperbaric chamber treatment.  It sounded a little voodoo ish.  You go into a chamber, put on a hood and just breath in and you get better.  However, I have seen some great things that I don't think can come from just therapy alone: one boy who's nose ran constantly and had snot hanging out( one day I thought he had a piece of spaghettie caught in his nose, like he sneezed it out.  I reached over to yank it out and it wasn't spaghetti)nothing not even a drip now.  Another child was barely verbal and started picking up more words, and using a hand that was severely hampered by a stroke.Today, one child used a bottle for the first time.  Also, Brody's eyes seem to have become a little focused.  I think that's why some of the recent pics he looks so good is that he is now starting to focus on the person and will look you in the eye rather than stare in your direction.  Compound this with the therapy and I'm extremely excited for Brody's future.  Again, this is no miracle cure for him, although one boy that couldn't move early on crawled into our room today, and is speaking more clearly.  Another boy, who couldn't sit on his own, or hold a spoon, fed himself at the kids table sitting in a chair.  I would imagine within months two of the boys in Brody's class should be using walkers pretty regularly.  I'll miss seeing them do something new everyday.
So, I spoke to the teacher today and asked the question that everyone always seems to avoid.  Is and if Brody will walk?  And.... the... answer... is...  Let me see if I can paraphase it.  "He's doing really well, his back is getting stronger and he can stay standing when helped up, but he still needs a lot of support to keep him from falling over, so it's really hard to tell".  Shoot! haven't heard that answer before. I guess I didn't realize how weak his upper body was or how far he needed to go!  So, tomorrow the teacher is going to give me specific excercises to build his upper body, to help with the crawling and everyday movements.  She did say if we can continue on with his therapies and his growth continues at this rate,  then we should really see some definite improvements in his sitting and fine motor skills!  So, not exactly what I wanted to hear, but a positive message. Besides, I don't think you'll ever get a doctor or a teacher to comment specifically on his abilities. 
Christina, his teacher did mention that we should continue to try and find out if his condition is Genetic, a disease, an acute incident at birth or something else, this could help in future therapies.  Some of you may not know the extent of Brody's history, but real briefly,
He started having seizures at 4 days, they were uncontrollable and developed into infantile spasms(which stunted all growth and he became blind).  We put him on all sorts of medications and one early diagnosis was that he had a rare genetic disorder that would cause him to probably die before age 5 and would never walk or talk!  This diagnosis was quickly withdrawn, but I swear for the next year I was scared to go into his room at night.  My dates maybe off a little here, but basically, he was a vegatable until 18 months or so when the seizures stopped.  At that time, he couldn't communicate in anyway, and we had to guess when he needed to be fed, clothed, etc.  About this same time we got a second opinion on his eyes and within a week we were in surgery re-aligning his eyes.  At this time he started to laugh, focus a little and come out of his fog.  We have been thrilled to see where we came from to today. 
As a parent of a child with Special needs it might be much easier to handle or deal with a child who is so far behind.  I've listened to other parents who talk about how frustrated they are with their kids, and if they could only stand, or use this hand better, or whatever, that things would be far better for the child.  It seems like its the parent with the problem not the child.  If a child is almost normal it's far more dificult to handle as a parent, I don't know maybe it's the expectations are higher; or being so close to normal is much harder on the parents.  Or it could be that with Brody we were given the worst possible outcome early on and now everything  we see him do is something we never thought we would see.  As a parent we're always told that the kids should out-live you, it's the way it's supposed to be.  When you have a child that is severly limited in their abilities, you start to ask yourself what's going to happen 20-30 years from now.  I think the answer comes from knowing that Brody was put here to serve a purpose and his life means just as much as everybody elses and he deserves as much attention as we can give him.  When we look back we can be happy or satisfied that we did what we thought was in his best interest and he made the biggest impact he could on those around him.
Ok, so maybe this wasn't such a funny, exciting, or maybe even that great of a post, but let's go back to the beginning paragraph.  So, It's been a little chilly this last weekend.  Just an fyi -40 celcius is the same as -40 fareheit. You ask how do I know, I just do, -30 yesterday, with a windchill into the -50's, but to be honest it feels like a dry cold, so not so bad, kind of like a dry heat.  I had to run to town and pick up Brody's splints I had made from a local seamstress, should have taken about an hour.  Her husband, must be lonely or I just look like some poor sucker with nothing better to do!! And Who would be interested in a stamp collection with over 1 million stamps(no kidding, that's what he told me, floor to ceiling 3-ring binders full of 'em).  Oh and then his coin collection, and his rare fishing lure collection(some haven't ever been in the water), oh and his fishing pole collection, luckily I got out of there two hours later just before he brought out his lighter collection.  So on the way back I was making double time.  Damn Canadians country roads 35 mph, are you kidding me, try 70 and get out of my way, made the turn home onto the dirt road, made the last left turn, and tried to  get back before snack time, car started to drift as I rounded the corner, felt like Vin diesel in Tokyo Drift, I realized I had taken the car out of 4x4 to save gas and didn't put it back in, car kept drifting, but now more like a fish tail and I was heading for a telephone pole, and all I can think of was "Oh Shit" I didn't get the insurance.  So I stomped on the gas turned the wheel towards the ditch and basically, jumped the snow bank and missed the telephone pole by 6 inches.(not kidding on that one, check the pics).  So, the tow truck driver came asked me what happened.  He said something like looks like you just drove straight into the ditch, you must have caught some good air. And just at that second a scene from  Vacation popped into my headed "150 ft huh Russ".  Anyways, I felt pretty good about missing the pole, the car was fine.  I was going to change the story and explain how I tried to dodge a squirrel or a I tried to swerve and miss a baby koala bear, but figured no-one would believe me.  I guess I don't have to worry about being asked to drive anymore.  And I think I won't ask for more guy time or testosterone, anymore. Ciao!!

The Halfway point

Brody and I have reached the halfway point  of the 5 week program.  We all went to town to celebrate quite the adventure.  First, it was off to the natureopath store, where we bought some SAGE in Bulk.  Just an fyi if you have stiff muscles a soak in Sage should do the trick, then add a little thyme after a couple hours and some rosemary to the mix.  Then after about forty minutes add butter and broil  until the skin turns brown, oh wait, I think I just gave you my turkey recipe!!  Then it was off to the fabric store where two little old ladies tried to help us figure out how much fabric we needed to make our splints and wrist guards for Brody.  I kept adding up the calculations in my head and kept correcting the gal.  Yes, I'm making a set of leg splints and arm splints so x2 on the fabric x2 for the set and then another set.  She kept using her calculator and it was driving me nuts.  It wasn't rocket scientist! Well, I hope I got enough, fabric.  All of the mom's picked out cool fabrics and patterns. We got black!!  With Black piping, and black velcro, he's going to look like a character off of Sprockets!   I think I've officially gone over the edge, though; nature stores, and fabric!  Where's my sewing machine, here comes Betsy Ross!!  Yeah I just wrote about fabric Land and even complimented the little old lady on her fine quilt she made.  I'm not sure but I think my testosterone levels have dropped to an all time low.  Where's Susan Powter when I need her someone please "STop the insanity"

Things have been great this week the boys are all doing really well.  There's very little complaining and a lot of work being accomplished.  I think I remember them saying that week three is the week that you'll see the biggest gains, so far looks like they are correct.  Some of the muscle building exercises are starting to work and the kids are doing a lot of things I didn't think we'd see.  Now we're starting to prepare for when we get home, make sure we have the proper equipment, so there won't be any gaps or set backs, etc.  Today,  Brody, started pulling himself on the plank better than he has in the past few times.  Brody even walked further with the walker than any other day and with less complaining.     It was really exciting to see him take about 10 steps on his own and to watch him move each foot ever so slowly just barely dragging the toe on the ground and bringing it to a rest just in front of the other foot.  It must be extremely difficult for him to just stand on one leg as he pulls and stretches to raise the other foot.  You can  see the concentration on his face but after about 10 steps he breaks down and collapses.  The teacher picks him up and we start all over, can't imagine working out and every time working yourself to exhaustion and collapsing.  Then being asked to stand up and do it again.  It's funny you can tell when he gets tired but he doesn't seem to anticipate the next work out, or he knows it's good for him so he doesn't complain.  I would think when we started strapping him in to the walker he would start to resist but he never has!!  What a kid and a great week!

So, Back to the whole testosterone thing.  I was starting to feel like I was beginning to get on the same cycle as the girls in the house, and driving me a little nuts!HA! Fabricland, we watched the biggest loser together, I had a headache one of the gals gave me a midal.  You get the point!!   I don't mind reaching out to my feminine side but I think I'm hitting the point of no return  I need to  buy a gun, slap on some calfskin underwear and  and go find some Tatonka to kill!  Well, maybe, not quite, but I think you get the point,.   So Rhett(Brody's little friend), Brody and I were in the car waiting for the girls to get out of the store.  I made a few phone calls, and Rhett start to miss his Mimi( as he calls Rhonda).  So, I figured he being from Mississippi never really saw much snow.(BTW, as we were sitting there 3 snow mobiles  came flying down the road and stopped at the gas station to fill up, then drove to the store and took off. Don't see that in Spokane).  Anyways, took Brody and Rhett for a ride in an empty parking lot,  They were both belly laughing and having a great time as we spun round and round. I kept telling Rhett,  you like spinnin Broadies with Brody, and he would laugh!   We watched as Rhonda came out of the store and searched around for us!! the kids were laughing and having a great time.  That's what guy time's all about!! I think I'm good for awhile!!  Take care all!!

Week 2 Down 3 to go!!

This week was a wild and crazy one! It really seemed like the kids were starting to get into a routine and were o responding well  to some of the treaments. Extremely cool seeing kids start to walk for the first time and the excitement they have. I was watching one little boy on the walker and he got so excited he tried to jump.  Remember these kids are all about 2 years.  Luckily they do a before and after video.  I made sure in the before picture that both Brody and I didn't look to good.  Kinda like a weight watchers video. Black and white belly's sticking out!  Then voila! color picture smiling; I guess we'll see, eh!  Ya know(this is the start of my Canadian accent eh),
The last few days have been good one's.  I tried to go in on my own and have Brody use the walker, not sure he's really up to that just yet. Maybe he gets too tired too fast, or if he hates the mittens(the things we use to tie his hands to the bar so he can't let go).  Not sure but we only went about 3 steps and he was doing everything in his power to get out. For a kid who wasn't very strong a few months ago, he's definitely getting much stronger.  So I think we'll try that again later!  Not sure what the difference is, but if I hold his forearms and stand in front of him and walk; moving his feet a little he's great but if I have him his the walker, not working, maybe I'll get him hooked up on the walker and stand in front of him, so he knows I won't be behind him if he falls?
So the day is divided up into stretching for about and hour, potty time, snack time, some standing and reaching another hour, potty time again, then the individual workout( this is the walking, rolling, crawling part) the hardest part of the day, then sit down and some fine motor skills and lunch.  This past week Brody has fallen asleep each day after the individual workout, right at the table, poor little guy!
We did do some new individual workouts, Brody did extremely well in one, we splinted both his arms and legs and put him between two chairs,  I sat behind him making sure he stood up straight, trying to strengthen his core.  I've never seen him stand up for so long;  I didn't realize how tall he was, I think it kind of surprised him to because he's was smiling away at first.  So, I get people asking what do you expect or think he'll get from the class:
After watching for a few weeks, I think we get a glimpse at some of the possibilities that might be possible if we continue to push and work him.  I'd like to say he'll come home running and everything will be okay, but the reality is he's so far behind that even if he starting developing at a normal rate it would take years of hard work to get him to where he should be.  The exciting part of all of this though is 4 months ago we couldn't get him to even stand, now he does it with ease.  His fine motors skills are improving, he can grasp a spoon.  I have started feeding him more normal foods.  Sascha might not like this part but he loves cheetos!  He takes such a gingerly bite! He had chocolate pudding for the first time, jello, gold fish crackers, chocolate milk, orange juice, apple juice, pepsi(just to try, he only really drinks milk right now and trying to get him off that as his only source of fluids.
With that said, his bowels are very active I've slowed down his laxative, and I changed 15 dirty diapers yesterday, didn't go on the potty once, and I know he waits until I put the diaper back on, or we go into the chamber, not cool to sit for up to two hours smelling a dirty diaper in a very compact space.  Cheers to all those following along, Brody loves hearing any comments, and keep the prayers coming.