Disney and NEGU

We had such a GREAT weekend!
As you might remember, last summer we traveled to Orange County to visit NEGU and fill Joy Jars. The Jessie Rees Foundation: Never Ever Give Up - NEGU has been a big part of our lives since that trip. This past weekend they had their annual Gala to raise money and honor many individuals who have contributed in various ways over the past year. We were lucky enough to be invited to this very special evening!
Since the event was being held at The Disneyland Hotel, well how could we not get a little Disneyland in!!! What's even better was that we got to do it all with Ava and her family!
Though Sofia knew we were going to LA she had no idea we were going to Disneyland. So, minutes before we left for the airport we told her the secret, and she screamed!
Since we were only going to have 24 hours for the parks we went full force! Given that Sofia and Ava are very sun sensitive and get tired very quickly we were able to skip the main lines and go through the fast pass lines, which made things so much easier. Sofia made it very clear that she was not going on any roller coasters, that is until she tried one! She definitely has her daddy in her with the rides and I'm happy she's not scared like me! Since it was going to be such a packed weekend we decided to leave Noni at home. Of course, he got a fever the day we left!!! Mommy guilt was kicking in but his aunties, grandma and cousin gave him plenty of cuddles.
On Saturday night we were overwhelmed by just how amazing the Jessie Rees Foundation is and were so inspired by the Gala. Ava and Sofia even got to go onstage and present an award!! But the highlight of the night was when the girls got awards for being so courageous! The night was full of joy, tears, inspiration, dancing and even a wardrobe change by both Sofia and Ava (2 dresses are better than 1)! It was an amazing weekend!!

Today we were back to reality with an appointment at LPCH bright and early. Sofia received her iv chemo and will start her steroid pulse tonight. Her counts are a little lower than I expected at 880, but the Doctor was fine with that number. It looks like her dosage will stay at 50% for awhile. She looks and feels good so I'm ok with that. We have noticed that Sofia has been tripping more than normal which is a side effect of her vincristine chemo. We will look at doing some physical therapy and water therapy to help her.
We are so grateful for all of those who have helped us both physically and emotionally over the past 17 months. We still need every prayer as we get through this last year!!!
#teamsofia