Saturday, April 25, 2015

Max's animal treasures...

Spring weather means lots of walks with Max.  We are able to get a few miles a day once all our appointments and meetings are done.

Trees are turning green, and flowers blooming.  And the animals have returned from their winter hiatus.

This means we are living in a wild kingdom!  Not only do we have the usual bunnies, squirrels and birds, but we are seeing foxes, pelicans, river otters, cranes and blue herons lately.

Here are some photos of the animals Max gets to see every day.  He loves when we find a "treasure" on our walks.  Although, he really, really wants to see a giant turtle one of his friends told us about. We're still on the lookout for that dinosaur.

Blue herons like to hide out at the further pond.  This one wasn't looking to stick around when I got too close for a picture. 

The pelicans have returned! I counted 16 this time.

The white crane didn't want to hang around long either.  They must know I'm not one of them. 

Our foxy friend ran off when she saw us turn to go home.  

But she is a friend of the neighborhood because she's busy eating the bunny population that took over in the past couple of years. 


We found her litter living in our neighbor's yard.  

There are 5 fox kits, and they are so adorable and playful.


Steve was able to get video of them playing.  



I hope you've enjoyed our walk about with all the animal treasures Max has found.  

Saturday, April 18, 2015

Science Fair...

As a 5th grade project, Max got to participate in the science fair at his school.  His classmates all worked in groups, but Max's group consisted of his teacher and mom.  His friends came to help out with his experiment, and he was able to put together a great science project.

He was supposed to learn about a body system.  Max chose digestion.  As part of learning about digestion, his teacher was reading him a book about edible insects.  I think I made enough disgusted sounds and faces for it to stick, because he was hooked at that point on making his science project about edible insects.

We found articles for him to read, and videos to watch.  As it turns out, insects really are quite nutritious and a good source of sustainable protein.....if you can just get over the ick factor.

These are some of the infographics Max used for his project.

http://www.fao.org/forestry/edibleinsects/84664/en/


The taste test experiment was his favorite part of putting his project together.  We ordered edible insects from amazon.com.  We got crickets, worms, cricket flour bars, chocolate covered insects, and ant candy.  

Max's hypothesis was the boys will like the worms, and think they are good.  The girls will not try any insects because they will think they are gross.  The adults will try the crickets, but think they are gross.  

Only way to see...











The boys tried everything.  And mostly thought they were good.  The kids didn't really like the cricket bar made of coffee. And our lone girl was skeptical of everything at first, but then gave them a go with the chocolate covered crickets.  Then she was game to go back and try everything else.  The adults were happy to add to his data too.  They all thought they were fine.  I don't think we'll start stocking them into the pantry, but they weren't disgusting. Max asked for a turn, but we had to wait until he tasted them with his teacher, in case he would have any allergic reactions to them.  

He loved having his friends there helping him with his project.  They helped gather his data, and gave him plenty of photos for his board too. 

The next time he saw his teacher, they had their own taste test.  While Max can't eat by mouth, he can taste and he got a real kick out of "eating" bugs. 









Max tried the worm first, then the chocolate cricket.  Then he thought it would be just hilarious to "try" a huge spider to trick everyone.  It was absolutely not real, but he thought it was really funny. Max's teacher was a good sport, and she tried some too.  She thought it was okay, but said she felt like she had a cricket leg in her mouth all the rest of the day.  


We worked the rest of the week getting answers from him on where he would like things on his board, as well as finalizing his wording.  Although we put it all on for him, Max learned everything on it as well as came up with the hypothesis and conclusion.  Which was, his hypothesis was not correct girls and boys and adults liked the insects.  

The science fair was at school this week.  Max hasn't been able to go to school in many months because of colds and flu.  He was so excited all week to get to go see all his friends and teachers. And they were all happy to see Max and see what he had been up to with his project. 

We had some more crickets and worms for his classmates and their parents to try.  None of the teachers were interested. Although, they all stopped by to see his work.  






We were very proud at how much attention he gave to his project.  And again, grateful to his friends for participating.  He had so much fun with them all.  It's hard to believe he has just one more month at his wonderful elementary school....and then, middle school awaits, along with new and old friends and new adventures! 

Wednesday, April 15, 2015

Milestones...


It was almost 11 years ago I took this photo on our bed at Max's grandparent's house in Virginia.  We were there visiting for a little break from the constant doctors appointments that followed his diagnosis and brain surgery.  Steve was working in California and I was lonely and tired of doing it all on my own.  So I packed little baby Max up and we went for a couple weeks to see Grampy and Grammy.  

Baby Max's ducky hair had just started growing back.  He slept most of the time those days, because despite the surgery that reduced his seizures from over 200 a day, he was still struggling with seizures and he was just exhausted from them.  We were having to give him rescue medicine daily, at the tune of around $250 a dose.  We had tried all the types of drugs that were an option for Max, and had one more thing to try.  It came with risks, as they all do.  It was not approved by the FDA.  It could cause eye problems.  But, all of Max's doctors agreed the risks of him continue to have uncontrolled epilepsy were larger than the risk of him having tunnel vision.  So, we requested the medicine to be sent to us on our little vacation in Virginia. 

When the medicine arrived, I looked it over and read every word that came with it.  I contemplated not starting it.  I didn't want it to make the seizures worse, or make him even more lethargic.  We were so far away from home, and I didn't know how he would react.   But, even while we were there Max was continuing to have seizures, and going through the rescue medicine wasn't a good plan either.  

As I was trying to decide when and if I should give him the medicine, Max was laying on the bed and watching out the sunlit window.  I snapped this photo, I thought he looked like he had fire in his eyes. A will to live.  I knew we had to try the medicine, we had to give it a chance to work.  

I gave him the first dose and nothing spectacular happened.  But then, twelve hours later I gave him the second dose, and I realized he hadn't had a seizure all day.  For the first time in his life, he didn't have a seizure all day.  That was the day we got to meet Max, the boy who was locked into a brain that didn't work for him.  That was the day he started to truly live a life without seizures being in control. 

For 11 years we have gone to incredible lengths to make sure Max has had this medicine.  There have been moments where he has needed additional medicine as his brain has grown and seizure types have changed.  But, this medicine was the first one that worked.  It was the first one that gave me hope that we may just be able to get on with life.  

Tonight, without much fanfare, I put the bottle of his medicine in his closet.  His nurse gave him his last dose.  For nearly a year, we've been weaning him off of this medicine because he's covered by another medicine which covers the type of seizures he has better.  It's unlikely we will ever go back to this medicine for him.  But we'll hold on to the bottle just in case...I think because I can hardly believe he's really not going to be taking it anymore.  

I'm not sad to see it go, quite the contrary actually.  It's just a milestone of sorts.  Something I never thought we would see go away is now tucked into his closet.  One of these days he may not need any medicine for seizures.  Maybe.......I can wish for that, right?  Why not?  

He's sleeping now.  And tomorrow he will wake up and there will be one less pill in his system.  I think that's something to celebrate.