Tuesday, December 20, 2011

Happy December

It’s been awhile since I’ve had a chance to update everyone.  Bevin got to see the new Pediatric Rheumatologist on December 2nd…it’s the first time she’s gotten to see one in almost a year…althou her regular pediatrician has been an awesome substitute.

The new Peds Rheum was really great and spent an hour with us, which I thought was pretty generous since I know they schedule appointments every 15-30 minutes depending on the doctor.

He had me start from the beginning (what made us first bring her in) and how she’s done since then.  He then did a full check-up on Bev and she flirted with him the entire time…yes that’s right, I sat there and watched my TWO YEAR OLD flirt with the doctor as he checked all her joints.  It was hilarious!

Her right knee (the most affected joint) is still a little swollen, nothing horrible, but bigger than it should be.  So we upped her MTX to .3ml (from .2ml) and will see if that helps.    

He is also concerned about her growth (Bev is very small and skinny) and specifically stated his concern about her height to weight growth so we have to keep an eye on that.

In the three weeks since she’s had the MTX upped she has not cried at all during any of her shots, that’s right folks, no tears for three shot nights in a row!  Now she doesn’t take the shots willingly, but no tears from a two year old…that’s rock star status!

We have the recycling drive back in full force for the 2012 walk and have already raised $175 in recycling! J

Merry Christmas!

Thursday, November 17, 2011

A year ago today…

A year ago today my baby girl, at just 21 months old, was diagnosed with Juvenile Rheumatoid Arthritis…something we knew nothing about.

Now, 12 months later, our lives are a little different, we are by no means JA experts, but there’s definitely so much more we know now that we didn’t know then.

In the last 12 months Bevin has had:
·         44 injections of Methotrexate (that’s more injections than vaccines!)
·         6 lab draws (and she will have another before the month is over)
·         3 Ophthalmology appointments
·         694 doses of Naproxen

But because of the JA we:
·         Got involved with our local Arthritis Foundation and found out how wonderful and supportive they are
·         Were able to attend the 2011 JA Conference in Washington, D.C. (thanks to the Arthritis Foundation) 
Meet some awesome families who have been a great support system and some who have become great friends
·         Raised $3304 for the 2011 Arthritis Walk
·         Were asked to let Bevin be the Juvenile Honoree for the 2012 Sacramento Arthritis Walk (of course we said yes)
·         We found out just how awesome our Pediatrician really is

I would never wish any kind of disease on anyone, especially a kid, but it really does show that so much good can come out of something bad.  Do I wish she didn’t have this disease, yes, but would I want to go back in time and never have met all these wonderful people…no.

I have been overwhelmed with all the support we have received from family, friends and strangers.  People who have found our blog and followed Bevin’s journey for the last year and kept our family in their thoughts has meant so much to me. 

Thank you so much to everyone who has supported Bevin this last year and I hope you continue to do so! 

Wednesday, October 26, 2011

Bevin getting a shot

10 months into giving Bevin her shots I finally took the time to get a video of it.

Some “shot nights” are better than others, this one was nowhere near the worse, but we’ve had better.   Overall she handles it pretty well…

Monday, October 24, 2011

Honoree for the 2012 Walk

So as I mentioned, months ago, we were asked if Bevin would be the Juvenile Honoree for the 2012 walk…of course I said yes…we were SO honored to be asked!

The 2012 Walk sight is up with Bevin on the home page!  This is such a great start to the 2012 year for our family (especially after the hard year we’ve had).

Please show your support by joining our team (whether you can actually be there, or only be there in spirit), donating and/or helping to spread the word!

Thank you for all of the support!

Wednesday, October 12, 2011

Are you wearing blue today?

Today, October 12th, is World Arthritis Day.   On World Arthritis Day people with rheumatic and musculoskeletal disorders from around the world join together to make their voices heard.  You can join in and raise your voice too!

Here’s how others are raising their voices:
This is the mom of a young girl, who by the age of 12 (YES 12!) has had both hips replaced with titanium; she’s wearing her blue today!
This is Bean, another little girl living with JA…she’s wearing her blue
The Empire State Building honored World Arthritis Day on Oct. 12, 2011 by shining its world-famous tower lights in all blue
Billboard in Times Square, New York honoring World Arthritis Day and the Arthritis Foundation Fight Arthritis Pain campaign
Here’s Bevin in front of her tile at our new neighborhood park…spreading the word about JA
This arm belongs to a little girl, Esella, almost 3 years old who is also living with JA.

No pink ribbons, No telethon, No spokesperson, No TV commercials....
Just 300,000 kids who suffer in silence daily...Without a cure. Please 'Do Blue' today for my daughter and all of the other heroes who live with Juvenile Arthritis. Kids Get Arthritis Too!!

Today is World Arthritis Day!

Wear blue today to support any of these kids, or any one else you know that suffers from this disease…

Where’s your blue?

Thursday, September 22, 2011

An overdue update

So I just realized it’s been over a month since I have updated anything…wow…can I just say it’s been really hectic lately and of course the blog was the last thing from my mind.

Currently Bevin is doing well and the meds are maintaining the JA.  About a month ago she had a bad couple of weeks; she was starting to fall a lot again, complaining of an upset stomach and bruising…a LOT.

But we ran updated labs and she saw her pediatrician and a few days later it was like the bad days had never happened.  So for that I’m thankful and hope it stays like that for while.

Northern California Kaiser is officially getting the new Pediatric Rheumatologist…FINALLY (the previous one retired in January of this year).  Dr. Elizabeth Shaw will be starting in the Sacramento area in October (or so the Oakland facility has told me).

I’m looking forward to meeting Dr. Shaw and seeing what she says about Bevin.  Currently we’ve been seeing her pediatrician, who I absolutely love and has on more than one occasion offered to refer us to an out of network Peds Rheumatologist (which means a drive to the Bay) if that would make me feel more comfortable, but I’m more than comfortable with the pediatrician for the time being and can wait until the Peds Rheumatologist is officially here.

Other updates:
Hayden (Bevin’s older brother) had a birthday and is now FIVE!  Yup, I have a five year old…I’m not sure how that happened…he also started kindergarten and so far he LOVES it.

Hayden on his first day of Kindergarten
Hayden had a birthday party with Sacramento Valley Steamers and the kids got to ride the train over and over

Sacramento Arthritis Foundation held its first annual JA Family Day on September 10th at the Sacramento Zoo.  We were able to meet other local JA families and a JA Family friend drove up from the Bay to attend as well.  Here’s some pictures:
Bevin and Esella, our Bay area JA Friend, like Bevin, Esella is two and has JA
Hayden made friends with a reporter from the Sac Bee who kindly let him play with her camera.
The kids in the blue have JA, the kids in the yellow are their biggest supporters/fans (their siblings)
Me, Katie (Esella’s mom), Bevin and Esella-our new friends and trusted confidants
Esella helping Bevin with her new bracelets
There were three giveaways, one for a JA kid, one for a JA sibling and one for a JA parent…well we took the cake…Hayden won the JA sibling raffle-a $50 Target giftcard, he got a camera…and I won the JA parent raffle, the book Raising a Child with Arthritis-A Parents Guide and a $50 dinner giftcard…I already had the book so we passed it on to another JA family, but we kept the dinner giftcard…I could use a night out J

Thursday, August 4, 2011

Mom Next Door-Dandelion Magazine Fall 2011

In May I was nominated to be the Mom Next Door for Sacramento Parents magazine…well after hearing my nomination, Sac Parents passed our story onto Dandelion Magazine (Sac Parents Special Needs Publication) as they felt I would be a good fit.  Their editor, Melanie, contacted me immediately and asked if I would be willing to be in their fall 2011 issue…which of course I said “YES!” to! J

The issue is now out; it’s free and located at most doctor’s offices, therapy/counseling offices, rec centers, special needs schools, etc.  You can also find it online at:
This is a great magazine and it’s truly amazing to see what families out there have gone thru and what they are able to accomplish.  I am so honored to have been able to be a part of it! 

To quote a another mom from the fall 2011 issue “I really believe that if you set the bar low, that’s as high as your child will go” (Maiddy Dunigan).  Maiddy-I couldn’t say it any better!

Monday, July 25, 2011

It’s just Arthritis…

Sometimes I don’t think people realize how SERIOUS arthritis and juvenile arthritis (JA) really are.  Because everything looks okay, people assume it is.  Plus, people aren’t as knowledgeable about arthritis as they are about other diseases like cancer or diabetes.  Let me educate you…

This is not the same arthritis your grandparents get due to old age.  When most people hear the term Arthritis they think Osteoarthritis which is a joint disorder that involves inflammation of one or more joints and is most commonly caused by trauma to the joint, infection of the joint or age.  I actually have Osteoarthritis; I broke my wrist in the fifth grade and is aches from time to time, especially when the weather changes.  This is not the Arthritis my TWO year old daughter has.

My daughter has Rheumatoid Arthritis which is a chronic, inflammatory disorder that may affect many tissues and organs (YES ORGANS!), but principally attacks joints.  The pathology of the disease process often leads to the destruction of the joints. Rheumatoid arthritis can also produce diffuse inflammation in the lungs.  The cause of rheumatoid arthritis is unknown and is considered an autoimmune disease.  There are so many different forms of arthritis that I can’t even begin to name them all, each one having its own “special” effect on the body.

Do you know that one of the most commonly used drugs to treat JA is Methotrexate (MTX)?  Did you know that MTX is a Chemo drug?  Yes, that’s right, Chemo…of course the dose that is used to treat JA is not as high a dose as used in Chemo, but you still risk all the same side effects:
·         Chills & Fever
·         Hair Loss
·         Infertility
·         Loss of appetite
·         Lowered resistance to infection
·         Sensitivity to sunlight
·         Nausea/vomiting

Before my daughter was even two years old she was prescribed this drug…when we first discussed it with her doctor, he of course told us all the side effects…at 2 infertility isn’t a concern, but what about what she’s 25?  As a parent of a child with a chronic disease you have to weigh fixing the problem now and worrying about what may or may not happen in 20 years.  What if my daughter can’t have a son or daughter of her own one day because of this drug?  But if we take her off the drug, what will the JA do to her body?

Do you know that people who take MTX and other drugs like it are at a higher risk for cancer later in life?  When Bevin was first diagnosed I kept hearing “at least it’s not cancer” and “it could be worse”…you’re right, at least it’s not cancer…but because of the drugs she’s on, one day it might be.  Once again I have to weigh helping her now and risk what could happen.  Parents who have never been in this situation cannot imagine how hard something like whether or not to give your child a drug to help them now really is.

Some of the other commonly used drugs to treat JA are:
·         Enbrel
·         Humira
·         Remicade

These drugs also carry a great risk of possible side effects and the Remicade is given in an infusion form…like a Chemo treatment.  I don’t know as much about these drugs as Bevin’s not currently taking any, but one day she may have to…and I have met other children who are on these very powerful drugs.

With all this “talk” about HealthCare Reform and the requirement for all Americans to have Health Insurance in 2014 (I work for a health insurance broker)…do you know that arthritis is an automatic decline on most individual insurance plans?  And if it’s not considered an automatic decline, it’s a huge rate up.

These are just a few of the individual underwriting guidelines…

Of course if she has group (employer sponsored) health insurance Bevin will be okay, but what if Rich and/or I lose our jobs?  And our COBRA coverage expires?  What if we can’t afford COBRA?  What if she doesn’t “grow out” of the JA and she loses her job as an adult?  These are things I have to worry about. 

Do you know that kids with JA are also at risk for uveitis which is inflammation of the eye and if undetected or untreated a person could lose their eye sight.  Uveitis is estimated to be responsible for apx 10% of blindness in the United States, but it is something that is very common in kids with JA.  One of the treatments for Uveitis is Steroid drops…
Do you know that children with JA have their joints replaced just like adults?  This may not be as common as adult joint replacements (because ideally the child needs to have stopped growing), but if the JA is bad enough and other options are exhausted…this does happen…at the JA Conference we went to we met a young teenage girl who’d had both her hips replaced.  Now if that doesn’t sound serious I don’t know what does.

Did you know because of the immune suppressing drugs JA patients are on, things as simple as vaccines can become an issue…and being around kids who’ve recently had vaccines can also be a problem.  Ultimately when your child is given a vaccine they are given a “Live Vaccine” which is basically the virus…because JA patients are on drugs that suppress their immune systems, if they are given Live Vaccines/Viruses their body may not be able to fight it off…things like the Chicken Pox.

Did you know 1 out of every 5 kids is diagnosed with a form of JA and that currently 300,000 kids in America have it…my daughter is one of those kids and she is only 2 years old…and everything I have just told you are things I have to think about every day…no it’s not cancer, but it doesn’t mean it’s any less serious.

For more information on Autoimmune Arthritis, you can visit:

Wednesday, July 20, 2011

Victor and Crystal Rodriguez

So I know this is off topic for this blog, but I wanted to share this story with everyone.

On June 4th of this year a local couple, Victor and Crystal, were married and headed to the Bahamas for their honeymoon.  On the last day of their honeymoon, they decided to go parasailing…due to faulty equipment, the harness broke and they both fell (some articles say 40-50 feet others say over 250 feet into the water, I don’t know which is accurate).  Crystal died and Victor sustained numerous internal injuries…neither had insurance.  They were married for 12 days.

I don’t personally know Victor and never got the chance to meet Crystal, but my sister-in-law played softball with them.  When this tragedy happened, their friends, family and community pulled together and started raising funds to get Victor home (as of today he is back in California thanks to a large donation from the Greater Sacramento New Car Dealers Association who paid for the Medevac to get him back to Sacramento).

My husband and I got the chance to participate this past weekend in the Crystal Rodriguez Memorial Tournament (Arena Softball) where 100s of people and 30 softball teams came together to participate and help raise money.  I was so amazed at all the people that showed up to support them.  People volunteered their time (working at the arena) and efforts to make this tournament possible.  And I don’t know the exact total raised, but last I heard it was over $20,000…in two days.

There are all kinds of fundraisers planned between local restaurants, a basketball tournament, a garage sale and more to continue to raise funds for Victor’s medical care.

After the support we received when Bevin was diagnosed and we started the walk team, I was amazed and to see this family receiving this overwhelming amount of support amazes me even more.

I am honored to be able to participate in these events and meet the people who know and love Crystal and Victor.  Their story is tragic and amazing all at the same time.

To read more about Crystal and Victor please visit the below links.

The story about the accident:

Update on Victor:

Victor’s homecoming:

Wednesday, July 6, 2011

We’re in DC!

So I haven’t been able to post as much as I’d like to lately.  Things have been super hectic between getting ready for Washington, D.C. and the JA Conference and preparing for Opa’s Celebration of Life which will be held on July 16th.

We arrived in DC on Monday July 4th and have been go go go since we got there and it’s been a BLAST!  We’ve done as much sightseeing as we can (with 2 small children).  My sister, who lives in Connecticut, took the train to DC and was able to spend the 5th and 6th with us which has been so great because I haven’t seen her 8 years.

The conference starts tomorrow so I will definitely have some more posts soon.

Tonight in the lobby I met two families from New Zealand who are here for the conference as well as a mom I know from a Facebook JA group!  I’m so excited to meet everyone else!

Here’s some pictures in the meantime:

The kids and I in the hotel room

The family by the WWII Memorial Fountain

My sister and I at the Lincoln Memorial

My sister and I with a woman who protests in front of the White House 24 hours a day since 1981

As you can see B is not having the time of her life

The family in front of the capitol

B enjoying the sightseeing

My sister, Erika, and I, seeing each other for the first time in 8 years

Thursday, June 9, 2011

Monday, June 6, 2011

The 2011 walk is officially at an end

I thought it was about time I updated everyone on our 2011 Arthritis Walk fundraising total and how we got there.

Our official total was $3,304 (YAY!)!!!  That was raised due to a mixture of donations (mainly), recycling and some items we sold.  The recycling actually raised more than I thought it would, but definitely did not come close to the support we received via donations.  Here is how everything broke down:
1.      Donations-$2,497.91
2.      Recycling (3 months)-$393.09
3.      Team T-Shirts-$130 (we sold 13)
4.      Tutus-$105 (we sold 8)
5.      Water Bottles-$44 (we sold11)
6.      Pampered Chef Online Show-$25
7.      Car Decals-$10 (we sold 2)
8.      KGAT Wristbands-$9 (we sold 2)

During the time leading up to the walk I would see these other teams raising more and more money and I would get a little bummed out that our total wasn’t anywhere near that high, but when all is said and done, I know we worked really hard to get to our total and it is something to be proud of.  Not that other teams didn’t work just as hard (as I know some teams did), but without being on any other team I don’t know how they got to their totals.

The recycling and tutus definitely took a LOT of my own personal time, but it was so worth it.  It may not have raised thousands, but by involving the local businesses with the recycling I definitely made more people aware that arthritis is an issue for kids.  And it made them work to (by making sure to save all of their recyclables), which made them more aware.

I have even MORE fundraising ideas for the 2012 walk and am hoping to network with more teams (I definitely got some good ideas from a few other teams)…by working together we will hopefully make people aware of how serious this disease is and hopefully one day all the funds raised will have paid for the research that does find a cure.

Until then I will just keep being my daughter’s biggest advocate and supporter…

Thank you again to everyone who supported us, big or small, every little bit makes a huge difference as well as meant more to me than you’ll ever know.

Thursday, June 2, 2011

We’re going to Washington, D.C. Baby!

It’s official; we received a scholarship to attend the 2011 JA Conference in Washington, D.C.!  I received the “official” notice yesterday morning and couldn’t be more excited!

We received a full scholarship which will cover airfare, hotel (for 3 nights), conference registration, money towards meals and ground transportation for all four of us!

I am so appreciative of the support our local Arthritis Foundation office has given us and am honored they picked our family to go!

We are planning to arrive a few days before the conference so we can turn this into a mini family vacation (how often do you get someone else to pay your airfare for a family of 4??).  I went to D.C. when I was a junior in high school on our annual band trip, but Rich has never been, so he is really excited.  We won’t get to do as much as we could if we didn’t have the kids with us or they were older (how much sightseeing can a 4 and 2 year old really handle), but we will squeeze in as much as we can!

The conference provides a Child & Teen program which is organized by age group and is medically supervised.  This program allows the parents to drop the kids off (both your child with JRA as well as any siblings) and attend the Parent Breakout Sessions.  I will also get a chance to meet some of the other parents I have been networking with via our blogs and Facebook.

I know I haven’t been posting much lately, but I definitely have some updating to do, so hopefully this weekend I will get a chance to sit down and update everyone with what’s been happening!

Monday, May 16, 2011

The walk is over...this year's anyway

This past Saturday, May 14th, was the Arthritis Walk; 27 people/kids showed up to support Bevin on the morning of!  I couldn’t believe that many people showed up!  Even our neighbors that lived behind us in our previous house came out!  It meant so much to me to have so many people give up a few hours (and get up really early) on their Saturday to support our daughter.  As of Saturday morning we had raised $2,914 and we were the number 6 fundraising team (we had been in 7th place for awhile, but the tutus, water bottles, T-shirts, etc pulled us into 7th).  We even got a team booth, which I didn’t know we were getting until the day of…next year I will come prepared to decorate! J

The walk had a pretty good turn out, I don’t know what the final registration count was, but the week before we had apx 450 registered.  The event itself raised $150,542!  It was a little hectic, but overall I think it was pretty good.  The event had a huge turnout of volunteers between Wal-Mart and Kohls.  There was a photographer who took team photos, which was great because I completely forgot to have someone take a team picture with my camera.

I hope to have a more active role in next year’s event. I had really planned on volunteering more, etc at this event, but with everything that happened with my grandparents it just wasn’t possible.  So I hope I can make that happen next year.  And Bevin will be the 2012 Sacramento Arthritis Walk’s Juvenile Honoree!

Tonight is our Chili’s Night at the Chili’s in Roseville on Eureka Road.  You can still support Bevin by going between 11am-10pm, bringing the flyer (below) and giving it to your server.  Chili’s will donate 15% of all the sales we bring in to Bevin and the Arthritis Walk.
And now for some walk pictures…

The California State Capitol where the 2011 walk was held
One of the FEW smiling pictures we got of her that day
Rich, John and Krista

Brian and Joy

Heidi and Mike

She cried thru all the announcements

Brittany and Hayden dancing during the warm-up

And were off…
Jen, Brandon and Ryan came out from our neighborhood to support Bevin

Bevin’s “Hero Board”…althou I kind of gave the foundation the wrong age…she was actually diagnosed at 19 months and started MTX at 21 months…opps!

Thank you SO much to those who came out and supported Bevin on Saturday as well as those who donated to our cause.  We appreciate it SO much!