The California Coast Classic Kick Off!

Friday afternoon we picked up Esella at school, grabbed some lunch, and then got on the road to head into "The City" (that would be San Francisco, for you non locals). We got to our hotel, checked in, and then decided to just go for a nice walk in SF before we needed to be back at the hotel for the CCC kick off dinner.  

If you have never been to San Francisco...I am assuming you have at least seen pictures? Like of the INSANE "hills" that make up the city? I found this picture on another blog,  ryanhellyer.net to show just how steep some of these "hills" are. 

 

OK so Justin and the Kids and I went for a walk through the city....the kids were in our double stroller. Stroller weighs 34lbs. Everett weighs about 19 and Esella weighs 26lbs. 

That's 79 lbs. 

Not counting the diaper bag hanging off it. 

Let's just say we are a little sore. Especially Justin who pushed the kids up a REALLY steep hill (just like the one in the picture of the man above) so that we could go look at Lombard street. We were originally going to walk down the most crooked street in the world but wouldn't you know it...there were only STAIRS! No stroller access.

See Alcatraz?

Oh well. We had plenty of other hills to climb. And go down. 


So we saw the sights and took in the sounds of the city for a couple hours before heading back to the hotel ti get ready. 

The Golden Gate

 We got back to the hotel and headed down to the registration area to go meet some of the AF staff and volunteers. Beth, who works at our local AF office and coordinates this amazing event, introduced us to all kinds of wonderful people. Esella was given her own pom pom to use to cheer on the riders in the morning. It was so awesome to be in the chaos of registration and seeing all these people getting ready to bike for EIGHT DAYS. 


After checking in, we met up with both sets of our parents who had rooms right by ours, and  got ourselves and the kids ready for the evening. At 6pm they had a cocktail hour, followed by a dinner for all the AF staff, volunteers and riders. It was a little overwhelming as there must have been maybe 250 people there. There were over 170 riders alone! 


Some different people went up to speak as we finished up our meals. They began by showing THIS VIDEO made by the 16-18 year olds at the JA conference in DC this past July. Then the president of our local chapter introduced our family and Esella and spoke about us a bit and then they showed the VIDEO I MADE . And at the end we had the opportunity to speak to the group. Since I am not exactly in love with public speaking, Justin spoke on behalf of all of us to thank the riders and the AF for everything, as well pointing out how we need more ped rheumys and more research for this disease. There were so many things we would have liked to have said...but we knew that it was late and the riders needed to get their sleep. 


Afterwords it was like a mob scene for us. We had so many people come up to introduce themselves and want to meet Ellie. Flashes were going off like crazy as pictures were being taken left and right. One man, a rider, came up to me and told me that he got into this bike ride several years ago for himself...something to help him lose weight and stay active. He told me that my video made him cry. That it was heart breaking and that he now knows why he is riding. He is riding for Esella and all the kids like her. He thanked me several times and I thanked him as well for riding for my daughter. It was a really touching moment that will stay in my heart. I am tearing up now thinking about it.

Three of the eight honorees

Justin had a similar experience with another rider. When he asked him what his reason for riding is, he said "I have a reason now."

We were also so blessed to meet another family whose daughter is an honoree this year. Colleen is a woman whom I "met" as part of an online support system for parents with JA. Her daughter Cailtin has the severe form of JA referred to as Systemic JA (aka Stills Disease). This type can attack organs and causes high fevers, rashes, joint pain and swelling. Caitlin's story is not mine to tell, but she is one brave, strong young lady. Colleen and her family started participating in the AF's walks many years ago and their team, the Princess Parade has raised over $200,000 dollars for the foundation!!! This family is AMAZING and such an inspiration. Colleen and her family are very well respected in the JA parent community and so many people strive to be like them. This year, Colleen's husband Dave is taking part of the CCC for the first time. As they said in their VIDEO they are taking the "Princess Parade on the road."

Colleen is blogging about Dave's trip and also wrote a post about the CCC kick off. You can read it HERE


In addition to meeting Colleen, Caitlin and Dave, we also were so lucky to meet another Honoree, Alexa, and her family. Alexa has got to be one of the most mature and poised young ladies I have ever met. She was AMAZING with Esella and Esella just LOVED both Alexa and Caitlin. Alexa's mother and I spoke for a while on Saturday and it seems her story started out so much like Esella's. I hope that my E will grow up to be like Alexa and Caitlin. So strong, respectful and resilient.  

 So Saturday morning we got up early to see the riders off. We clapped and cheered until the last of the 170+ riders took off and headed on their 525 mile journey down the coast in honor of these three amazing girls, as well as the other five honorees and the rest of the nearly 300,000 children in the US suffering from JA. 

Esella watching the riders take off

E and Alexa hanging out

Being silly

There was an awesome marching percussion band at the send off...and E got to play the drums!

It was, well,  an honor that our baby girl was one of the eight selected to be an honoree this year for the California Coast Classic  bike tour. We honestly had a great time, and feel blessed that of we have to be here in the world of JA, that we at least can be surrounded by amazing people. SO far the tour has raised nearly $900,000 (that is what we were told at the kick off). We would LOVE to see it break a million! So if you have a few pennies to share...you can make a donation by clicking the link above to the CCC website. Colleen's husband is the only rider I "know" and you can make a donation in Esella's name by clicking HERE.


The CCC will be posting pictures daily on their website (the link above) click on 2011 Ride Photos....and you will see some familiar faces in the Arrival section ;)


We wish the riders good luck and a happy and safe voyage. And we thank them for all they have done. Together we can make a DIFFERENCE. 

Caitlin, Ellie and Alexa seeing off the riders.

 

This disease picks beauty, doesn't it?

First Shot

Last Friday was our first "shot night." It was the first time that we had to give our baby girl a shot of an immune suppressant medication. 


It went OK. As Justin prepped the needle I explained to E that she was going to start a new medication and it was going to hurt (yup, I try to be as honest as I can with her about all this). She immediately started to cry. I held her on my lap and Justin administered the shot. She cried of course, but she did ok. She refused a band aid and she wasn't a fan of Justin for about 30 minutes after. She also didn't want ANYTHING to touch her boo boo. Including poor Brinkley (the cat) who had curled up next to her. 


When I took her to bed we talked about it. I asked her where she got that boo boo and she said "From the medicine. It hurt and I cry". I told her she did a great job, but that we were going to have to do this every week. She said OK. HA. 


What was heart breaking...was Monday when I took her to the dentist. She said "I don't want to go to the dentist. I don't want a shot!"

:(


I told her, only the doctor, and mommy and daddy, give her shots. Yeah um, pretty sure that doesn't sound right, huh??


SO that is our JA update. The good news is that she didn't have any side effects. This is great news because we doubled her dose. The bad news is that yesterday her fingers were REALLY puffy. We documented it on the calendar and took pictures. We think her little body is trying to flare. 


And this Friday we will be in San Francisco for the CCC fundraiser kick off events! We are looking forward to the events and having the opportunity to thank the Arthritis Foundation as well as the riders who have dedicated the time and enegery to training and fundraising. 


Last weekend we were able to attend another Arthritis Foundation Event. This time, thru the Sacramento branch. They hosted a JA Family Day at the Sac zoo and we had a GREAT time! We got to spend time with Nicole, Rich, Bevin and Hayden (Bevin, who also has JA and is just a few months younger than Ellie) and got to meet other families. It was a great day! Here are some pictures...

Ellie and Bevin

Ellie making a Kangaroo

Bevin, Nicole, Me and Ellie

The girls checking something out

OK....It's late...off to bed!

Bittersweet

Esella has been asked to be a youth honoree for the California Coast Classic bike ride here this month. This is a 525 mile 8 day bike ride from San Francisco to Los Angeles. The riders take off Saturday September 17th. You can read all about the ride HERE.

Because Esella is a youth honoree, the Arthritis Foundation asked me to make a short video to display at the kick off dinner on the 16th. Please take a look, it is only 4 minutes long, and was another labor of love for my baby girl.



If you are interested in donating, here are the sites:

Northern California Donation Page


Southern California Donation Page


I'll be back soon with updates on the kids!


Katie

It's been TOO long...

WOW. It has been over a MONTH since I updated! I guess we have been busy around here!


Lets see...Esella is going to school two days a week and LOVING it! Her vocabulary is continuing to just grow and grow and she is bringing home her "artwork" every day she goes. She is an amazing big sister. She LOVES Everett and at dinner the two of them seriously just laugh at each other the entire time. Exactly why I wanted to have more than one child...the bond they already have is awesome!


And Everett?? He continues to be just the happiest and sweetest boy. Full of smiles and laughs... And the little bugger started crawling about 4 weeks ago now, AND he pulled himself the same day! He is obsessed with standing and is getting faster at crawling...I have to really watch him. And we have had to do a little updated baby proofing as well. AND he also will now pull himself up, let go, and get SO excited that he falls! his other favorite activity is having you hold his hands so he can "walk". This kid is exhausting. Where did my BABY go?????


Justin is working HARD and long hours. Building satellites is quite literally a 24-7 job. We miss him being home more but we are thankful he has a good job. 


I plan on taking on a couple private clients sometime in the fall. I need to order some things before I can start that up...and take care of some business. Looking forward to working a little again!


The last month...we have been to Sac to meet up with some friends and meet new people...we went to A Day Out With Thomas and got to ride Thomas the Train (Both kids LOVED it!!) and we have been trying to get together with Melissa, CJ and Baby Kyle once a week.....CJ and Ellie just love playing together and I am so thankful we live just a couple miles from cousins! 

And in JA news.....Esella had a rheumy appt yesterday. As we were expecting, we need to move to injections of her methotrexate (right now she takes it orally) and also, we will be DOUBLING her dose. That part scares me a little. SO far E has been fortunate to not really have any side effects so doubling her dose makes me nervous. But we will have to just take it one day at a time.

They also confirmed that she has at least one other finger involved (that would be three confirmed fingers and her one knee). Justin and I have suspected this more months now, because if we forget a dose of her Naproxen, we sometimes notice puffy fingers...but they have always been quiet when we go to the doctor. Yesterday they found her pointer finger on her LEFT hand to be puffy..that is the first sign of arthritis on the left side of her body.

In addition, they explained that it is unusual for finger involvement in the type of JA she has (oligio). Not impossible, just unusual. I know it is more common in the psoriasis type, but so far Esella is rash free. But regardless, the treatment would be the same at this point no matter the label.

So once we get the paperwork all faxed to our prescription company and they ship us the new bottles and needles, Justin will begin giving our sweet girl a shot every Friday night in hopes of suppressing her little immune system so that it stops attacking her joints. 


Well that about sums it all up! 



Here are a few pictures from the last month...I'll get back to regular blogging!!! 

Random one of Everett and Kyle a couple weeks ago.

Does the girl have fashion taste or WHAT??

And here are a bunch from a Day Out With Thomas...

our attempt at a family pic...ah ha ha ha ha

amazing faces children....amazing...

Bathe time!!! So fun in our house!
 

One from when we went to go visit David when he was recovering from his hip replacement.

Crawling and pulling up in the same day!

A couple of weeks ago...a baby meet up...
 

And later that day...a JA meet up. This is Bevin with Esella. Bevin also has JA and is just a couple months younger than E. But look at them...you can't even tell. Two of the most beautiful and energetic little girls!

   

Well....that is all for now. Sorry for the month off...I'll be sure to stay up to date!!!

Wordless Wednesday

Wedding Season

Well it's wedding season! And also first-birthday-party-season. Ha. Last night we went to the wedding reception of a guy Justin grew up with (we skipped the Catholic/Filipino wedding ceremonies...they stated at the peak of nap time...)

Esella had a great time, once she warmed up. This was her second wedding but her first she was just 8 months old so she didn't do much! Unfortunately neither of the kids napped well yesterday...but things turned out ok. The bride was Filipino and they had some pretty cool Filipino dancers perform...Esella really seemed to like them (she sat with her Grand B and watched them and clapped along to the music). And of course she enjoyed the cake...

And of course Dancing...

 This wedding had some cool things going on...they had a candy bar..i.e. a whole bunch of different candies you could bag up and take with you (they were the wedding favors). Esella liked this as well ;) Actually, everyone did, there was always a HUGE line for the candy! 

But the coolest thing? They had a photo booth. Yes, the kind that takes your picture and spits them out 2 minutes later. AND they had a whole bunch of fun things you could wear in your pictures....silly hats and glasses. Then you could cut some of them out and make them a scrap book page where you can write your well wishes. 

Seriously AWESOME. 

Yes, I took some pictures with my fancy camera but THESE pictures are by far, the BEST we took that night!

Awesome, huh???

Well that is all for now...We are headed to yet another first birthday party later today in the City...and I have to get a few things done first :) Hope you are all having a GREAT weekend!