Friday, June 20, 2014

Another Syndrome

Speaking of recent trips to the farm and allergic reactions...
A few weeks ago, Ben came back from visiting the farm with "Bapa" with a big mosquito bite on his forehead.  I didn't think much of it until the next day when it was so swollen and looked like a huge goose egg.  I wish I had taken a picture.  After a couple of days it looked normal again.

After another Sunday evening with a visit to the farm, I noticed his right hand swelling up. 

I couldn't find the sight of the actual bite for a while but finally I noticed a tiny blister on his finger.
I looked up "reaction to mosquito bites" online and it seems that Ben has yet another Syndrome...Skeeter Syndrome.
Seriously, it's a real thing.  However, it sounds more ominous than it really is.  It's just a severe allergic reaction to mosquito bites.  Nothing really to do about it except try and avoid mosquitos :)

I was able to attend the Utah Epilepsy Conference a couple of weeks ago.  Andy was camping with Josh so my kind brother came with me for moral support.
Thanks Jo :)
I can't believe I didn't get more pictures than this, but this is Heather Jackson from Realm of Caring in Colorado.  This is the organization from which we will most likely be getting Ben's cannabis oil.
It was very informative and answered a lot of questions we have had.  She made sure we understood that this is not a miracle drug for everyone but that over 50% of the kids that tried it had a positive reaction and 25% of those kids were "super responders" in her words.
We'll probably be waiting until fall or winter of this year after we have completely come off of the ketogenic diet and we've had a chance to see how he reacts to that before starting something new.

Even though Ben no longer has formal naps during the day (something I tried to fight but just wasn't going to happen) he sure is falling asleep an awful lot.
...and having lots of seizures.  His new record is 17 tonic clonics in 4 hours before we finally stopped the cluster with his diastat.  He clusters like that approximately once a week.
He's also started having a blotchy reaction after his seizures...what's that all about?

On days like that it's hard to get food into him...especially when he falls asleep in his chair.

He's an angel little double syndrome boy :)

Recent Odds and Ends

Kindergarten shots.  Good thing there's a huge tank of fish to help it be a good experience ;)

My Hoya Rubra bloomed again.  It's a rare occurrence and I savor it when it happens.
It always reminds me of Grandma O.'s bright sunny kitchen.
The soft, velvety pink petals with the plastic like star center has always fascinated me.
They also have a unique scent when they bloom.

Caught Matt being an awesome big brother and reading to Ben.
He actually does it quite often and loves it!

We've had the kids doing (somewhat) weekly swimming lessons since March.
It's been very good for them...each having a half hour lesson with their cute, private teacher while the other two have an hour of free time in the pool.
They're coming along and I hope to have them proficient within the near future.

So, a couple of weeks ago, I got home from shopping with Abby in the evening.  A few minutes later I got a phone call from our neighbor asking if we were coming to pack meeting that night.  Josh had already turned 11 (but to be honest, I didn't know enough about scouts to know that you no longer do pack meeting when you aren't a cub scout anymore).   So I just asked what they were planning on doing and he replied that they were planning on giving Josh his Arrow of Light award.  This was the first I had heard of it :)  Pack meeting had started 15 minutes earlier and they were waiting for us to arrive!  Yikes!!!  I told him we would be there and yelled at Josh to get his shirt on.  Andy was just hopping out of the shower so he stayed with the other kids while I ran to the church with Josh.   How embarrassing!  Of course, in my rush I didn't have my camera or my phone with me so the other Arrow of Light family took some pics for me.  Thanks so much Leah!
We had the honor of putting most of the paint on the boys' faces.

Proud of my Josh

Our same neighbor that had called us had made these nice, wood burned plaques for the boys.
Even though it was very impromptu for us, it was still a nice evening :)

A woman in our ward arranged a service project for a family shelter near by.
It gave me a great excuse to go through all the tubs of kids clothes I have stacked up downstairs.
I was able to week out the things that I didn't think we needed and pass them along.

Also, they were redoing the boys' room with a superhero theme.  I volunteered to make some vinyl decorations for the walls...

Super fun!  I hope to be able to see a picture of the completed room some time.

Another evening with kittens at my aunt and uncle's home.  The kids just adore these cuties.

We had to teach Ben how to not strangle them :)

However, later that night, Josh and Matt had a pretty strong allergic reaction.  Josh especially.  His eyes were so swollen and red.  He was miserable.  I don't know if it was all the kittens or the wind that was whipping stuff up into the air...probably a combination of both.
This last Sunday when we went out to Mom and Dad's they weren't tempted at all to go see their little friends.  Luckily, Abby seems to have no reaction to speak of.

My mom's cute parents.
I'm so glad my kids get to know and love most of their great grandparents.

Birthday Boys

Andy and Ben's birthdays are two days apart.  Between our own celebrations and getting together with his parents and then also with my parents for the occasions, it makes for a whole lot of partying :)
So here's a boatload of pictures from those gatherings...

Andy's actual birthday...

The next day when Andy's parents came to visit...

I love this one :)!

Andy chose to go to Hu Hot (one of our new faves) for lunch.  I was leery about taking Ben to a restaurant since we rarely have a good experience with that, but he did AWESOME!  He sat in his chair almost the whole time and played with his new cookie monster and elmo and drank water.  I did bring his lunch and fed it to him at the very beginning.  We were amazed and very pleased that it was such a pleasant experience :)

Ben's actual birthday...

That same day, celebrating both birthdays at my parents' house...

I caught him saying "thank you" to someone for their gift.

New "deedo" shoes!

Love these two birthday boys of mine!