Beautiful Lake Onatrio

Beautiful Lake Onatrio

Monday, January 24, 2011

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!!


  1. Way to go Grizwald... Glad to hear of all the progress Brody has made! Looking forward to seeing you guys in a couple of weeks.. for some guy time.. I will only show you one of my collections.. the beer one!

  2. Ill say some prayers for your family.

    That is some great progress the little guy is making. Reminds me to take time to appreciate the little things in life, the little victories and the magic moments.

    I look forward to reading about more updates in the future!