Thank You and One More Favor ASAP!

Dear Friends and Family,

Thank you to my amazing family and friends who have been performing a civic duty by writing legislators on Hazel's behalf.  I'm so lucky to know you great people!

HB 233 was favorably recommended by the Health and Human Services Committee and is en route to the House Floor where it will be debated and voted on sometime this week.  Yay!

We need to write every single legislator and ask them to support the bill and vote YES on HB233.  The insurance companies are on full attack of our bill (go figure) and we need to let our representatives know that we Amino Acid based formulas should be covered by health insurance in Utah.

Here are some instructions I've copied and pasted from an email by Michelle Fogg (Utah Food Allergy Network President):

1. Recipient Info: copy and paste all of these email addresses into your Bcc: address field. janderson34@utah.gov,parent@utah.gov,rogerbarrus@utah.gov,jbird@utah.gov,jbiskupski@utah.gov,jbriscoe@utah.gov,derekbrown@utah.gov,melbrown@utah.gov,dbutterfield@utah.gov,rchouck@utah.gov,lavarchristensen@utah.gov,dclark@utah.gov,tcosgrove@utah.gov,fredcox@utah.gov,bdaw@utah.gov,bdee@utah.gov,jdougall@utah.gov,jdraxler@utah.gov,sduckworth@utah.gov,jdunnigan@utah.gov,beckyedwards@utah.gov,seliason@utah.gov,janicefisher@utah.gov,jfisher@utah.gov,gfroerer@utah.gov,bgalvez@utah.gov,fgibson@utah.gov,rgreenwood@utah.gov,keithgrover@utah.gov,stevehandy@utah.gov,wharper@utah.gov, lhemingway@utah.gov,nhendrickson@utah.gov,cherrod@utah.gov,greghughes@utah.gov,ehutchings@utah.gov,dipson@utah.gov,kivory@utah.gov,briansking@utah.gov,toddkiser@utah.gov,blast@utah.gov,dlitvack@utah.gov,blockhart@utah.gov,jmathis@utah.gov,kaymciff@utah.gov,rmenlove@utah.gov,mikemorley@utah.gov,merlynnnewbold@utah.gov,jimnielson@utah.gov,mnoel@kanab.net,coda@utah.gov,ppainter@utah.gov,leeperry@utah.gov,jeremyapeterson@utah.gov,vpeterson@utah.gov,dpitcher@utah.gov,mariepoulson@utah.gov,kraigpowell@utah.gov,pray@utah.gov,hrichardson@utah.gov,dougsagers@utah.gov,ssandstrom@utah.gov,dsanpei@utah.gov,jseelig@utah.gov,ksumsion@utah.gov,evickers@utah.gov,cwatkins@utah.gov,curtwebb@utah.gov,markwheatley@utah.gov,ryanwilcox@utah.gov,lwiley@utah.gov,bradwilson@utah.gov,cwimmer@utah.gov,billwright@utah.gov
2. Email Subject: HB 233 - Please Support and Vote YES
• Send a separate email to your representative and change the email subject to "I am your Constituent - Please Support 
  HB 233"  
  If you are unsure who your representatives are, click here to easily find out http://www.le.utah.gov/GIS/findDistrict.jsp.  Constituent emails are much more powerful. Note to all - make sure you sign any email with your full name and mailing address.
3. Salutation: Dear Honorable Representative,

Please keep your emails short and sweet and just ask for their support of the bill and urge them to vote yes.  Please do this ASAP!

I appreciate your help and support!

Ashley

A Favor

Dear Blog Readers,

I have been involved with a Bill going through the Utah legislature right now.  It's close to my heart and shouldn't be a polarizing issue.  It's called HB 233.  It basically deals with Amino Acid based formulas (ie Neocate which has nursed Hazel back to health since about a year ago when we found out about her severe food allergies and EE).  It will mandate that insurance companies in Utah provide coverage for these formulas when children have certain medical needs for it.  The financial burden is utterly overwhelming and coupled with the stress of having a child with these medical issues is downright devastating.  Thankfully we have a number of friends and neighbors who have helped with our financial and emotional burdens associated with the costs.  To give you an idea, a can of Neocate costs us $45 (through our insurance's home health department).  Hazel drinks about one cans worth of formula each day.  That's about $450 every 10 days and up to $1,350 each month.  It is cheaper by the case direct from the company, but not by a lot.  At this point, there is absolutely no coverage by most insurance companies in Utah (including ours).  14 other states currently provide insurance coverage.

I'm asking for help.  I've been busy writing to legislators asking them to support this bill and help other families that might have to deal with this issue in the future.  The bill has been prioritized and has been assigned to the House Health and Human Services Committee today.  Then, yesterday afternoon it was put on the agenda for this coming Friday.  (It's prioritized to first on the list!)  It will then go through the process of being debated, amended and/or recommended and possibly released to the House floor for vote.

Here's where you come in.  We need to write emails to the committee asking them to favorably recommend this bill. 

Email Subject: HB 233 - Please Support with Favorable Recommendation

If any of these members are your representatives, change email subject to "HB 233 - I am your Constituent - Please Support"

Rep. Paul Ray, Chair pray@utah.gov  

Rep. Evan J. Vickers, Vice Chair evickers@utah.gov 

Rep. Rebecca Chavez-Houck rchouck@utah.gov  

Rep. David Clark dclark@utah.gov 

Rep. Tim M. Cosgrove tcosgrove@utah.gov 

Rep. Bradley M. Daw bdaw@utah.gov 

Rep. Ronda Rudd Menlove rmenlove@utah.gov 

Rep. Dean Sanpei dsanpei@utah.gov  

Rep. Christine F. Watkins cwatkins@utah.gov 

To find out if any of these legislators are your representative, click here.

Keep your email short and sweet.  Just ask them to support the bill and explain how you know me and maybe how you have personally observed the financial stress or benefits of such a formula.

I really appreciate any help!  Hopefully other families will never know the financial burden of having a child with Food Allergies or Eosinophilic disorders.


** A huge thanks to Tammy Zundel who has lead this effort to pass this bill!  And Michelle Fogg who is just awesome!

Please leave a comment if you write - I'd like to thank each of my sweet friends that have already written emails.  You are all too wonderful!

Love,
Ashley

ETA:
The sooner you write emails, the better!  Feel free to pass this info on to your friends and family members to help.  More is better!

Chrissy Gets Married!

My sis-in-law (Jarom's little sister) got married on January 8th in the Redlands, CA temple.  It was a beautiful day for the sweet couple.  The night before, we hit up BJ's for the bachelorette party with pizza and the most amazing avocado egg rolls I've ever tasted.  Mmmm!  We laughed and talked.  It was my very first bachelorette party, actually.  So fun with some great girls!

The temple ceremony was later in the afternoon so we had lots of time in the morning to get ready and hang out.  Which was great for me, since I wasn't feeling so hot that week.  Chrissy was beautiful all day.  It was such a blast to be there for her special day.

Anyway, the ceremony in the temple.  It was so nice and the couple were surrounded by loving friends, neighbors and family.  Four of Jarom's siblings were in the sealing room.  So cool!

Dawn Noel watched our babies while Jordan was playing in the San Andreas All League Football Game (which is apparently a big deal!)  But, really, he's very good at what he does and has had offers from all sorts of colleges from California, Oregon and Utah.  It's just sad the game had to be on the same day so he totally missed the wedding. He was pretty happy to be playing football, though.  It was a big day for both of them.  Sadly, his team lost in overtime - but I heard he played very well.

My kiddos were absolutely adorable all dressed up.  Hazel was the cutest flower girl I've ever seen and Cannon was a heart breaker in his tux. 

Sisters

Dawn Noel, Chrissy, Ashley, UB

 

Directly following temple pictures, we went to the church for a ring ceremony and reception.  The cultural hall looked gorgeous on purples and yellows - it was SO Chrissy!  

               

Hazel threw her petals all the way down the aisle with a little pushing from me.  She didn't want to get off the stage and screamed when I took her off.  Don't judge the bink in her mouth.  It was a long day and it made her happy.  And yes, she lost a shoe along the way.  I can't believe this is the same baby that was failing to thrive a year ago.  She's so beautiful and healthy now.  I am so proud of this strong little girl.  She brings so much joy to my life. We've come so far and she continues to improve. 

Okay, back to the wedding.  Chrissy and Robbie are a great couple.  They compliment each other.  Chrissy is such an incredible girl.  She has always been strong and happy.  The best way to describe her is as an incredible source of light.  She is one of the most loving people I know and I always wondered what kind of a man she would marry.  Enter Robbie.  He's so great and supportive.  He loves her and is kind.  He grounds her.  He truly loves her and I'm so happy for them.  Plus, weddings are fun!  

Jarom's brother, Ammon, works for a DJ company.  They provided some of the best music and dancing and lighting I've seen at a wedding.  Even though I wasn't feeling well, I danced my booty off and had so much fun.  I lost my voice after singing to some Lady Gaga and Rihanna and left a little early to put the kids and myself to bed.  I wish I could have stayed to the end.  Jarom also slipped out a bit early to catch the last half of Jordan's game.  

              

Cannon dancing with his cousin, Khulan

Chrissy, my dear,

You were stunning and will be an incredible wife to your new hubby!  Thank you for letting us be a part of your big day.  Thank you for being a lovely Auntie to my babes.  I love you!

Love,

Ashley