Wednesday, May 9, 2012

Cooley's Anemia Care Walk 2012 - SUCCESS!!

Team Mailyna banner courtesy of my dad :)

Her busted little hand, still smiling!
If you're from the Bay Area, you know that the weather lately has be absolutely gorgeous!  Its lasted about a week of so & luckily, the Care Walk fell perfectly into that!  It has definitely been a hectic few days, but we always make it work!

The day before the Care Walk, Mailyna & I were actually in a Kaiser ER, after she sliced her hand on the fence.  It's a ridiculous story that I'll skip, but gladly, she didn't need stitches or a tetanus, they just wrapped it up after giving it a nice cleaning.  That girl I tell ya!!

So bright & early Sunday morning, I planned on running over to the San Leandro Marina to scope out a spot & wait for everyone else.  Plans rarely every go through perfectly & this one surely gave me a mini panic attack.  I guess I didn't do my research & just figured a walk around the Marina wouldn't be THAT big of a deal... boy was I wrong!  At 845am, the Marina was PACKED!!  There was people everyone, no parking & a 5K set up that day as well.  I had my girls with me, parking was ridiculous & couldn't wander around looking for somewhere to set up... thankfully, my soon to be brother in law was also there to lend a hand!  He was literally a life saver!  We snagged a prime location, 2 tables & everything slowly fell into place.

Enjoying the amazing weather, supporting Cooleys Anemia
The kids got the jump on us adults!
Walk it out!

We started our walk at about noon with 17 adults & 8 kids!  Everyone made it around at least once, which was the equivalent of a mile.  Many of the kids dropped off at the 2nd go around just because it was such a great day & they were anxious to place or hang out by the water... but they were doing so much running around that I know they took more than the 3 miles the rest of us did!

Notice the "Disney" theme!

Afterwards, we hung out at the park, BBQ'd & enjoyed each others company.  It is such a blessing to have family & friends that support Mailyna.  For them to take the time to show her how much her life means to them is something that honestly chokes me up.  We received texts & messages sending their love our way throughout the day as well.  The other amazing thing was the emails I was receiving as we were there. 

A well deserved rest!

Thank you for your support!
The donations trickled in here & there, and for awhile, I was stuck at a stagnant amount & thought that I set the expectation way too high for donations.  By the end of the afternoon, we had surpassed my goal to reach $1000 for the Cooley's Anemia Foundation!  Thank you ALL for donating!  A lot of people have no idea the struggles Mailyna has because she has no physical indications that she has a medical condition.  Many people forget that her condition is life-long and that there is no cure.  9  years ago, the options were limited... but the advancements that have come along in 9 short years, have made a difference in our lives.  So from the bottom of my heart, thank you for contributing to the future research for Mailyna & the rest of the Beta Thalassemia Community.

Here's a quick screenshot us reaching our goal & a special thanks to everyone who go us there!  The site is still up & we would love for you to visit it if you wanted to, but didn't get the chance to donate.  Any amount, large or small, helps in ways your wouldn't believe. 

 For more pics from the even, please click HERE.

To make additional donations or visit our fundraising site, please click HERE.

One grateful mama,

Thursday, May 3, 2012

Kaiser Complaint Results

The other day, I received a letter (2 months after our horrible experience) with the results of my complaint.  Pretty much a standardized apology, how they strive for positive experiences & all that blah blah blah.  They reviewed the situation & supposedly required some kind of training to avoid situations like this in the future.  I have to say it's basically what I expected... absolutely nothing.  To be honest, the irritation about the situation popped back up after reading it.  The kicker was the last line or so that specifically stated "unable to disclose results".  I'm not sure if thats standard or if that was something they decided to include because I blogged about the situation.  Ohh Kaiser... I'm glad the majority of our time is spent with the Hem/Onc team & not the peds floor at the hospital, otherwise I'd be looking for a new healthcare team.  Who knows how the situation was truly handled, but I'm done with it.  Mailyna is healthy & recovered from the surgery & hopefully we wont have a need to be back in the hospital for anything other than her transfusions.  

Til next time,