Arthritis Walk Honoring Phoebe!

So much to say about this big day, but honestly, I think the pictures speak best, so I will just image dump here for this post.

The night before Auntie A painted our nails green and purple! Even my mom painted her nails, which is literally the 2nd time in her life she has worn nailpolish that I can remember.

I was so overwhelmed when I saw this.  I knew we were going to have a table, but I didn't know we were going to have a banner that said Phoebe Steps.

Phoebe is walking in honor of HERSELF!  

These stickers were a cute idea, but they weren't sticky enough and kept blowing away!

Phoebe was the rockstar of the day!

Time to take a selfie!

Didn't the shirts turn out AAAMAZING?  

Jonathan, Donica, Penny and Rocky went all out of the walk.  They made signs, they brought donuts, snacks, a cooler of waters, necklaces, and streamers to decorate our tent.  But this sign.  I don't really know what to say.  When I look at it, I'm basically about to cry, because I love it so much.  Thank you guys.

The DJ had us warm up with lots of dancing.  Phoebe loved me holding her for the Cha Cha Slide and the Cupid Shuffle... ha ha, I don't know... I did my best lol!

They were super prompt about starting the walk!  Actually they left at 9:57... we still had people arriving late due to some traffic!  Fortunately they arrived and were able to join us just in time!

Phoebe wanted to walk her own Walk!

Then she got tired and I had to carry her!  Jason and I got separated and he had the stroller!  I thought we were closer to the end than we were when some others were ready to turn back.  But with how much Phoebe was wanting to walk, it was probably for the best because everyone caught up to us by the end.

My baby is so cute.

Phoebe is one of the 300,000 children living with arthritis.

Group Photo Time!!

Silly Photo Time!

All the kids on our team!  We have such wonderful friends.

Our family!  We love you, Phoebe bird!

Phoebe's doctor was also an honoree!!!  

I don't know what energy this kid was running on, she would not stop partying and dancing the whole time!

Trying my hand at public speaking.... The night before I was dyyyyyying with sore throat, and literally didn't know if I'd be able to talk, but I recovered enough to get through it.  Also, it was windy, so I couldn't really look at my paper super easily, so I just had to go with what I remembered.  Anyway, it was super short compared to other presentations I've given, so I wasn't really nervous when I got up there, but I always think I sound weird with a microphone. 

Jonathan actually took a video, so you can listen to what I actually said!  I don't really know what else to focus on, other than just sharing our story and trying to make people realize that many children are going through this as well.  But being an advocate is super important to me now, so I'd definitely do it again if other opportunities come up.   

We met another toddler the exact same age as Phoebe!  She was diagnosed at 14 months, but it took some time to diagnose, how awful!  She crawled without letting one knee touch the floor and eventually it swelled up really bad and she had to be hospitalized for 4 days while they tried to figure out what was wrong.  I think the mom said she did 4 rounds of anesthesia in a day, which just gives me chills of horror.  They tried to drain her knee, but got nothing.  She had an MRI and eventually was diagnosed with JIA and also maybe IBS?  She is struggling to gain weight and failed on mtx due to tummy issues.  So she is now on Enbrel injections, a biologic that has not been discussed as an option for Phoebe yet.  She is ANA positive but so far has no eye inflammation.  The mom and I exchanged contact info and found out we were already in a Facebook support group together.  We walked together just sharing our experiences.  Maybe we can have a play date sometime.  Her team had a super hero theme and they also raised a bunch of money.  It was fun to walk with them, you could just feel the outpouring of love.

And oh, man, the outpouring of love that I've felt these last few weeks is incredible.  Doing the walk really gave me a way to share with people what we've been going through.  Any time I got a text or email that someone donated or joined our team, it was like a little burst of joy.  Even $10 meant so much to me.  And some people just blew me away with their generosity.  I'm so glad my mom and sisters could travel all the the way to be in the walk.  Even my sister-in-law's dad joined us for the day.  Many friends and teachers came to be with us.  It was just awesome.  To everyone who supported us, thank you from the bottom of my heart.  We raised $4500 in less than 2 months.  Wow.

And finally, a big shout out to my very caring friend Ashley, who made little favor bags to give to people who attended the walk.  

Bird theme favors for the kiddos

Magnets of Super Mouse!  The quote says "Sometimes Super Heroes Reside in the Hearts of Small Children Fighting Big Battles."  I had literally just shared that quote on Facebook, and then Ashley found it on her own and came up with the idea to put it on the magnet.  It was just too perfect.  She also made little bird seed hearts!  I'm so lucky to have such a wonderful friend.

Anyway, that's most of our news.  On Tuesday, Phoebe graduated from PT, we only have to go back if she's in a flare.  Her therapist said, "she's like a different child from when I first met her!"  I' m having little fantasies about hearing the words "medicated remission," while also telling myself even IF that happens, it will probably just be temporary, while another part of me is day dreaming that oh my god, what if we can get there and stay there.... and then, case-closed, Phoebe will be well and stay well once she gets off meds.  I shouldn't even say it outloud, I'm gonna jinx it.... but at the same time, it's probably normal to feel like this.  But then I think about all those kids going to prom, or a Facebook friend's daughter who is doing poorly with her meds, and I get scared again.  Phoebe has finally decided she has whatever Cordelia has, so her nose is runny.  I keep checking her temperature, but it's normal, so I guess we're doing mtx tomorrow.  We haven't had to do it, since she had her infusion last week.