National Rare Disease Awareness Day

February 28th is National Rare Disease Day.  www.rarediseaseday.org. The main objective of this day is to raise awareness amongst the general public and decision makers about rare diseases and their impact on patients' lives. 

My great nieces and nephews are all decked out to bring awareness to little brother Jude's rare disease, Polymicrogyria.   On the back of their shirts it says "Jude's joy moves mountains. Jude's smile spreads hope."

Jude is a basketball loving little dude, with many small folds in his brain.❤. We will all be wearing these shirts at the tournament basketball game in Luck tonight.

http://pmgawareness.org/what-is-polymicrogyria/

   

The girls are done

The season ending games for both 

the Spring Valley Cardinals 

and 

the Luck Cardinals 

were played on Saturday night.

I drove to Durand to see Alyxis and the Spring Valley team take on the Durand Panthers.  It was a rough night for our Cardinals.  I have to say that these girls kept fighting, even when the win was way out of reach.  I felt like Durand pressed too long into a huge lead, but Spring Valley kept their composure.

Pregame stretch and smiles

Pregame happy team

Team Spirit

Alyxis shoots

Alyxis 

Alyxis and Sandy on defense

Alyxis goes for the rebound

Alyxis on defense

Alyxis waits

Alyxis goes for the ball

So, my time in the gym is almost over. 

I've enjoyed watching and photographing these two Cardinal girls teams.

The Luck girls finished their season at South Shore in a closer game.

A couple of photos from the last game I saw at Northwoods.

While I'm not closely related to any of these girls - one is a 2nd cousin once removed :-), I enjoyed watching them play and got to know them a little through my photos.

Coach Britta is my 2nd cousin's daughter and a good ball player in her days on the court.  Her assistant coach, Ronnie is my 2nd cousin and we grew up across the road from one another.

I'm proud of how this team represents Luck High School on the court,

and I'm sorry to see their season end.

It was an exciting season with  these Luck girls.

But so it goes.

The boys start tournament play on Tuesday night.

I hope we have several more games before it all ends.

A nice thing

Thank you notes are a nice thing.

I try to always write them, and I am always delighted to receive them.

On Thursday night at the game in Luck, one of the Junior Varsity girls came up to where I was sitting in the bleachers and handed me a note.  I really loved what she wrote and I might just enter some photos in the county fair next year, cuz who wouldn't want to win a ribbon?

Then, I got one in the mail, from another of the girls who plays on the Luck Girls Junior Varsity.

At the last girl's game, I dished out prints of my photos that I had taken over the course of the season of the Luck Cardinal players.  I didn't have many of the JV kids as I only saw a couple of their games.

So this was an added sweet surprise.

I especially loved that she hoped I had fun.

I sure did.

This is a very nice thing.

After

Tonight was the last season game of the Luck Cardinals boys.  They played St. Croix Falls at Luck.  The JV lost but the Varsity won.  Both games were exciting.  I was working the loaner Nikon camera that my friend Kathy was generous enough to let me use.  I did okay during the game and think I'm probably going to have to have this camera, but I have lots to learn about using it and I need to do weight training as it is much heavier than my Pentax.

After the game, Jude always wants to get down on the floor to play basketball.  I am glad I noticed and then got a few photos of him having a blast.

Jude at the line

Jude dribbles

Jude protects the ball

Jude sees the hoop

Jude helps big brother Gage to the hoop

Big Brother Gage with Jude

Jude and Gage

Jude and Gage - brothers

Jude has his ball

It was a good night, especially the after.

Major Drama!

So, I'm about to walk out of the house for a drive to Luck to watch the Cardinal girls take on Frederic in their first game of Regional Tournaments.  I grabbed a fresh camera battery and when I inserted into the camera battery compartment, a little piece of plastic flew off.  Not good. Major drama!

So, the little piece that holds the battery in place is now gone, so the battery does not make contact.  So, no camera.  Major drama.

I headed off to the game, sans camera.  Very weird for me.

So, here are the two photos I took with my cellphone,

It was a solid win for our girls.

Half Time

Final Score

So, the rest of the story.

I told my friend Agogo about my problem and she offered up her Nikon set up for me to borrow.

She wants to sell it and I'm pretty interested in buying.

It's a major upgrade for me for a fraction of what I would pay new.

So, I'm trying out her gear tonight at the last boys regular season game.

Steep learning curve.

Here are a couple of test shots from this morning, my most available photo subject.

Barley

Barley

Barley

Still some major drama to come about fixing the Pentax or buying the Nikon, but for now,

I'm back on the road again.

Sir Jude

Jude had his surgery on Wednesday morning and was feeling well enough to come and watch his big brothers play basketball on Thursday evening.  He was pretty quiet most of the game, but sat on Ryan's lap for a while but mostly stuck pretty close to Mom.

Mom Heather holding Jude during the game

Cousin Elliana holding Jude after the game was over.
Jude loves the sisters Elliana and Milena.

But after the game, he was his old self wanting to run up and down the court among the crowd, looking for a ball, so he could shoot at the basket.
🔃
Thanks to all who sent good wishes and positive vibes his way this week.
Now we wait to see how he heals and what might be next for our little Jude.

Success

The long dreaded switch of cell phone carriers went quite easily.  I can say that today, but Laila still  hasn't received her new phone and made that switch work, but I'm pretty confident it will go without a hitch.

I like the new phone, looks like we will save a little money and driving to the ballgame last night I was never on roam!  I had service in the gym!  It is a miracle!

***

Speaking of success, I am completely caught up on my basketball photos.  All games have been edited and posted on @wjophotography on Facebook.  I am happy to be able to keep up on the remaining games.

Here are a couple of good ones from the other night when I had to sit in the front, courtside row.

Gage

Gage and Jack

Jack

The Luck Girls are done with season play and start tournaments on Tuesday.

The Luck boys have another week of season play.

It's an exciting time of year.

I love it.

Oldie but Goodie

It's already 2 years 

since a friend and I 

visited a large number of trumpeter swans

 on the St. Croix River.

Happy Valentine's Day.

❤

   

On the numbers

22 

and 

2,290 

&

roughly 10,000

After working many hours this weekend to catch up on all the photo editing of my basketball work, I decided to do a little math as well.  

I knew things were mounting up, but I didn't realize the numbers were quite this big.

So far:  22 basketball road trips,  

34 Varsity Games (boys & girls) 

4 JV games,  

2,290 miles,  

~10,000 photos taken. 






And we are not done.

Big fun for me. 




I'm very lucky. 







When the season is over I'll have to do the final tallies and include minutes spent sitting on the bleachers.  That will be the big number.




Life is good.