Wednesday, April 2, 2014

Kyle's 11th Birthday, LAMposium, and Spring Break!

Ugh, definitely not a warm spring break this year.  I am still wearing my winter coat, although the kids sometimes are sporting a heavier jacket.  I've been defying spring and wearing floral and springy dresses, unfortunately I have to wear them with tights, boots and a sweater... but still, I am wearing them!

Kyle had his birthday this month!  So hard to believe, that our little guy... now eleven years old!

He had some friends over for a sleepover before his birthday (only free weekend), just three kids, so that all four of them could play video games together.  He had a blast!!!

Kyle has been diligently practicing for the Science Olympiad, and it was finally here.  He was so excited.  Parents weren't allowed to watch many of the events, so I dropped him off and got back just in time for awards.  Solon placed 2nd in the cylinder race (Kyle participated in this one), 3rd in straw structures, 1st in the egg drop, 3rd in clay boats, 1st in paper columns, and 3rd in mystery powders (Kyle participated in this one too).  He had a great time, and even more exciting, Solon placed 2nd overall.

The same weekend that Kyle had the Science Olympiad, Delaney had a soccer tournament with Three Lions.  So Dee and Kenny were down to Indy, for another round of cold games.  They won one, tied one and lost one.  She has another tournament this weekend; Kyle and I are going to stay home where it is warm.  :-(

Kyle's actual birthday is March 26th, and since our weekends were so packed... we ended up having his birthday celebration that evening.  He was a bit bummed that both sets of close cousins were away for their Spring Break, but he still had fun.

He had both sets of grandparents there to celebrate as well as Aunt Kristen.  And for some reason, he wanted monkey bread for his cake.  Not exactly sure where that hankering came from, but just in case everyone else did not want monkey bread I also made an angel food cake.

He got video games of course (including the new Rocksmith!), clothes, and lots of goodies.   Delaney and I were sitting in the back on the counter, so she took a selfie of us to show that we were there too.  :-)

Kyle is such a lucky eleven year old to have such good family and friends to celebrate his birthday with him!

Then it was time for the LAMposium; this year it was being held in Chicago for the first time.  We decided that since it was going to be so close, that it would be nice to attend.  The conference provides a unique opportunity for LAM patients, their families and friends, physicians, and scientists to get together and share information.  Kenny ended up helping out at the event the entire time, but with the kids' schedules and Delaney had midterm exams -- I stayed home to get them through the week. 

Saturday, though, we drove up to help get ready for the Breath of Hope Gala.  The kids and I, and one of Dee's friends, Sam, headed up after lunch.  Some of our friends were already there helping, and we were put to work as soon as we got there.  The girls did a lot of the physical work, moving things around from room to room, while we were helping set things up.  Everyone was busy doing something until it was about time to get dressed up for the dinner. 

We were very fortunate to have several friends and family come join us for the event too.  It's a great fundraiser for The LAM Foundation, without events like this I wouldn't be on the medication that I am now that is slowing the progression. 

My friend RuthAnn, took some before and after Gala photos:

And then Delaney took her own before/after photos with her friend Sam:

Kenny tried to get a group shot of everyone who attended with us.  We lost a few people somehow, but most of them made it in the picture:

We also got a few individual shots; the lighting was a bit difficult at times -- and comparing me to my sister who just returned from a cruise (I'm practically a ghost).




The kids did a great job helping out at the gala.  They helped sell raffle tickets and were runners at the dinner itself for those donating at the event.  Michael was a hit with his fedora, and he even got to pick the winning raffle tickets:



I wasn't comfortable walking up and having my name announced (and they said I didn't have to), so I chose not to participate in that portion.  I know that a few people were frustrated with me for my decision, but it was kind of difficult just being there.  I have a hard time talking and dealing with my illness at times, and I just didn't want the extra stress.  When each patient's name was announced, they were handed a rose.  Since I didn't want to go up there, RuthAnn's hubby snuck up and got me one too.  :-)

The Fund a Cure auction at the Gala that evening, raised over approximately $170,000.  And then the hotel donated $3000 for people checking out early the next day.  FABULOUS!!!  It is through events like this, that funded previous research and trials, that I even have a medication now to try to slow the progression.  When I was initially diagnosed, there were no treatments available.  Kenny wrote up a great synopsis of his time at the LAMposium, and it is under our About LAM link - check it out!

Another neat way we learned to help support The LAM Foundation is by utilizing Amazon Smile's fundraising site.  If you shop at, you can do the exact same shopping on their Amazon Smile site and select an organization to support.  It even shows you on the site after your selection, who you are helping support:

Amazon describes it as, "a simple and automatic way for you to support your favorite charitable organization every time you shop, at no cost to you."  Amazon donates 0.5% of the price of your purchases to your chosen charity.  Amazon says "tens of millions of items" are eligible, so obviously there will be some items that aren't eligible -- just make sure you check everything out and shop from the Amazon Smile site.  Sweet!

This was the first time we had to leave Loki home alone overnight, too.  He always looks so sad and forlorn when we leave; he usually hops into our bay window and watches us leave.

Our neighbor was nice enough to check on him that evening and the next morning, so he was in good hands.  But I think he was a bit miffed at us for leaving him alone overnight, as he was definitely giving us some attitude for a while the next day before he decided to forgive us.  :-)

And right now, we are just enjoying the rest of our Spring Break!  Even if it is here and quite cold:

Ken, Dani, Dee & Kyle