Hazel Gayle Update

I can't describe to you the feelings I feel when I think about my life a year ago.  One year ago I had a scrawny, miserable, rash-laden little 9-month-old Hazel.  I have exactly one picture of her around that time.  I didn't take many pictures of her because I just didn't want to remember her like that.  It's not the way any mother wants to see her daughter.  I kept her head and hands covered at all times because of scratching.  I hated taking her in public because of comments and stares and loads of "free advice".  It just wasn't a happy time in our lives.

Hazel around 9 months.  This picture is sad. 

BUT


Things are so much different now.  She runs.  She screams.  She giggles.  She fights.  She's funny.  She's smart.  She's adorable.  She's feisty.  She likes what she likes.  She lights up a room.  It has been work.  Hard work.  And prayer, lots of prayer.  Hazel has this spirit about her that draws others in.  I'm lucky to be a fly on the wall at times and watch her sweet interactions with children and adults alike.

With that being said, we had an appointment with Hazel's allergist.  She was retested for all of her allergies.  We had talked to the doctor just before the tests were administered about her chances of outgrowing some allergies.  He gave us hope.  He said that lots of times, the allergies trend toward becoming better each year until gradually.  They're just gone.  Well, our hopes were dashed when her back blistered with hives the moment the nurse did each poke.  Poor thing.  The allergies are worse.  And now cashews and pistachios and lamb are severe allergies where before they were just considered sensitivities.  We still have to wait for the blood tests to come back to confirm the results, but, yeah.  It's hard to deny the severity of her skin test.  Sorry for the graphic nature of this photo.  I know it's hard to see.  It's not as bad as it looks, really.  She didn't cry or flinch at all.  The only time she cried was when she dropped her little finger puppet monkey on the floor and couldn't reach it.  The numbers on her back are hard to read because she was so squirmy.  Any type of a hive means an allergy.  The allergy is more severe with a larger hive.  The only one she didn't react to was the chicken, but it's a trigger for her EE, so she won't be eating it any time soon.  Just in case you were wondering:

1.  Egg
2.  Milk
3.  Almond
4.  Cashew
5.  Hazelnut
6.  Pistachio
7.  Beef
8.  Chicken
9.  Lamb

Poke Test 4/8/11

Along with her poke tests (the one pictured above), she also did a blood test.  We went to the hospital and they drew not one, not two, but FOUR vials of blood to confirm the allergies.  Can I brag for a minute?  The girl did not flinch or cry at all when they poked her arm to draw the blood.  They had me hold her which I think reduced any anxiety she may have had.  There were three ladies gathered around her trying to distract her.  She calmly watched as the nurse poked her and blood traveled through the tube to the tiny container.  They showered her with praise and gifts.  She scored two stickers, two coloring books and two boxes of crayons.  That's my girl!


SO

We're not devastated this time around.  We're armed with information and confidence.  We know the road.  We've been on it for a year.  We just have to be super duper careful with our sensitive little one.  I've actually really enjoyed learning how to cook more health consciously.  I want her to maximize her nutrition with the foods she can eat.  I don't want her existing on tortilla chips and tater tots.  I've studied and researched vegan lifestyles and cooking.  She's going to be one healthy little girl if I have anything to do with it.  The greatest thing is that our whole family is benefiting.  Jarom and I have lost weight.  Cannon doesn't eat as poorly as I used to let him.  We have fruits and vegetables at every meal and consume plenty of dark leafy vegetables.  We eat only whole grains and have substantially reduced our meat and dairy consumption.  What a blessing Hazel is to our family.

I just have one last thing to add before I end this little update.  Hazel has been through a lot.  Her tiny body has caused her pain and discomfort almost nonstop since she was born.  She has had to endure it all.  The best thing about all of this is her sleep.  Through it all, she sleeps extremely well.  One main symptom of EE and eczema is extreme fussiness with chronic battles to fall asleep.  I think this is why we had a hard time getting the EE diagnosis.  She started sleeping through the night at 4.5 months and never stopped.  She also takes a 3 hour nap (minimum) each day.   I can only think of two times since then that I've been up in the middle of the night with her.  I don't mean to come off as boasting or bragging, (I completely understand you mothers who want to throw your shoe at me right now) but I've thought a lot about this little miracle.  I honestly don't know if I could deal with all of her other issues if she wasn't letting me sleep at night.  How thankful I am for her ability to sleep and sleep well!  She never ceases to amaze me.  Heaven knows Cannon could take a lesson from his little sister in the sleeping-through-the-night department.  But that's another story.

Happy Day!

Spring Break Report

It was Spring Break at our house this week on account of a) I didn't teach preschool and b)  Daddy was home with us ALL WEEK.  That's a super great treat for various reasons which I can't list here, but let's just say the laundry room spiders never stood a chance.  Ew.

We decided to keep our break low-key and very chill.  Now that it's almost over, all the days are blending together, but we did some cleaning, some organizing and some playing.

We:

• Organized and cleaned our our bedroom closet and took 3 garbage bags full of clothes to DI.
• Made a little rectangle in the backyard to keep the new sandbox and airplane teeter totter in.
• Shopped for a new kitchen table, but did not purchase one due to my fear of committment.
• Did all the laundry despite the bloodthirsty spiders in my basement.
• Sprayed the entire house for bugs. 
• Visited the baby goats at Thanksgiving Point.  Resisted the temptation to jump the fence and cuddle the baby goats at Thanksgiving Point.
• Rode the horses at Thanksgiving Point.

• Ate the most delicious peanut butter brownie.
• Made three batches of sorbet in our new cuisinart ice cream maker.  

• Drove around looking at different piles of wood chips for the new playground area.
• Watched three documentaries on Netflix.
• Made a batch of vegan waffles which the kids request each morning.  Recipe found here.
• Had a BBQ with my family member to commemorate the end of Spring Break.  We had burgers and veggie burgers, southwest green salad, veggie kabobs (yum!), and oven fries with chocolate and coconut sorbet for dessert.
• Slept in.
• Attracted kids from the entire neighborhood with our nifty rocket launcher.
• Ran 3.14 miles
• Snuggled
• Had two therapy sessions for Hazel.
• Attended Hazel's allergy followup (update forthcoming).
• Lamented the fact that it's over and Monday means back to real life.

I hope you got to enjoy some time with your family this week whether it was Spring Break for you or not.  We're looking forward to the last month and half (??) of school and then bring on Summer!!

Ammon & Colette 4.1.11

We traveled to California for the second Becar wedding in 3 months.  Ammon and Colette were married in the Redlands, California Temple on Friday, April 1st. 

Our kids were total troopers for the quick trip there and back and we watched Tangled 1,119,237 times on the DVD player and loved it just the same.  We arrived late Wednesday night to hang out for a day before the big day.  The boys went and set up tables and chairs for the reception while the girls did some shopping, cooking and setting up to prepare for the luncheon.  We visited the beautiful bride at approximately 1:00am for her bachelorette party.  Chrissy, Dawn Noel and I welcomed her to the family with a sparkling cider toast then got home and I did some finishing touches for Hazel's dress and stayed up talking to Jarom until 3?am??  Yes.  I'm a crazy person. 

The next morning was the BIG day!  The ceremony was beautiful and the couple is adorable.  Colette's dress was perfection on her, as was everything else.  She looked stunning.  Her colors were deep purple, mustard yellow and gray.  Sheri, Chrissy, Grammy and I served the luncheon directly following the temple.  It was lovely and delicious!  Sheri can throw an amazing event.  The reception was so pretty.  I wish I had more pictures of the reception, but I was busy dancing and chasing kids, so, you know.  It didn't happen.

Now here's more pictures than you bargained for...

Hazie rocks a tutu

 The belt and hair flower were what kept me up until 3am.

 A poor attempt at a family photo

 Not even close

 As Good as it Gets

 And we're done.

A Quick Post

 

Ready for church a few weeks ago.  Cannon refused to look at me.  Stinker!

I *should* be editing photos (sorry Jess) but I'm going to give a quick update on some things instead.

• First of all.  Thank you again to those who wrote emails on Hazel's behalf for HB233.  The bill was tabled in the Senate.  That basically means it didn't completely pass, but it will hopefully be prioritized when they open up the next session of the legislature.  I may be bugging you all again in a few months to write some more emails when that happens.  I feel great about how things turned out and we got further than we thought. 

• I got to go to the capitol and lobby for our bill (HB233).  I dressed up all professional rather than my usual dress of a stained/holey t-shirt and jeans.  I drove up there (all the while giving myself a few pep talks about how confident I am) and began my day as a lobbyist.  I met Tammy Zundel there (she's the President of the Utah Eosinophilic Disorder Support Group) she's amazing!  She helped me talk to the first few Representatives and then I got started on my own.  The men and women I spoke with were all very supportive and gracious.  I got teary a few times as I told them Hazel's story and asked for their support of HB233.  At one point, we met with a few members of the democratic caucus and they asked if we would present at the democratic caucus meeting that afternoon.  We got some lunch at the cafeteria ($8 for a tiny salad!!) and discussed our plan of action.  In the caucus meeting, we sat and listened as the Representatives discussed gun control, character education and immigration.  About 30 minutes in, it was our turn.  Tammy got up first and talked about the formula, expense and a brief history of the disorders.  Then I got up and talked about Hazel and showed some before/after pictures.  I cried as I looked around the room to see that I wasn't the only one.  I think I did okay.  Afterward I thought about at least 100 things I could have added, but I think I got my point across.  A few days later, we learned that HB233 passed the House!  What a great feeling that was!  I learned a lot from this experience.  I especially know that I NEVER want to be a career politician!  

This is what my nails looked like.  Just in case you were wondering.

• Hazel had an allergic reaction to cashews last night.  I found a recipe for a "cheese" sauce made from pureed cashews along with some veggies.  We were having tacos and rather than her usual rice and bean plate, I wanted her to be able to have something that resembled a taco.  I thought it would be okay since she drinks almond milk all the time and has a peanut butter sandwich almost every day.  I was wrong.  She pointed to her mouth at first and just said "owie" but I completely ignored it until Jarom noticed some hives starting to form on her cheeks.  I picked her up and stripped her down to see how far the hives had spread.  Her hands were also covered in hives as she had gotten the sauce all over them.  Then her eyes started swelling closed.  Her breathing was beginning to sound labored.  I put her in the tub to get most of the sauce off her body and stave off the swelling as much as I could.  I gave her some Zyrtec and got a diaper on her and we threw her in the car and sped to the hospital.  The swelling in her face and hands was getting worse and the whites of her eyes blistered and she kept trying to scratch.  Poor girl!  As soon as we got to the ER, the swelling started to go down.  Her breathing also sounded better.  They hooked her up to monitors just in case her airway was blocked from swelling.  They gave her benadryl and we stayed for about an hour to make sure the reaction was a solitary incident.  It was.  We got home about 2 hours after her first bite!  Not bad!  We probably could have used the epipen, and I had it in my hands on the way just in case.  Luckily she is doing much better today.  We are a little concerned about her weight again.  She only weighs 20 lbs.  I thought it was more than that but we haven't weighed her officially since December.  She's back to being less than the 5th percentile.  We have a doctor appointment for later this afternoon to see if there's anything we can do.  Other than that, she continues to progress and develop and remains the absolute most precious little girl we know!  I can't help but feel guilty.  Every reaction she has has been something I fed or made for her.  Jarom's done a good job of helping me feel better about it, but, boy is my Mommy guilt in full swing today!

•  Cannon is getting to be such a big person.  His curiousity never ceases to impress me.  He asks questions all day long.  It can get quite obnoxious sometimes but only when I'm trying to work.  He loves all things Buzz Lightyear.  He is working on not being so whiny.  I've got a sticker chart set up and it's been working pretty well so far.  He got to pick a prize out of my treasure box today which was quite the exciting victory.  I know it's typical 3-4 year old behavior, but the whining is my biggest pet peeve.  Other than that, he's a sweet, smart little guy.  He's also his sister's biggest advocate.  Any time a stranger wants to give Hazel food or a treat, he tells them that it might make her sick (sometimes he's so dramatic that he says it will make her die, but we've been trying to nip that one out of his vocabulary).  We love our Cannon man.  

• I took up Zumba dance as a part of my regular exercise routine and I'm obsessed.   Thank you to my friend, Jessica, for introducing me.  I've been going about 3 times a week and love it so far.  I'm definitely not a dancer nor do I possess the necessary coordination, but I have fun and jump around when I get lost (which is quite often).  I've lost some weight and intend to make it a habit.  I still love running and will continue to run this Summer.  

• Jarom has been working hard lately.  Spring is when all the concerts and plays happen at his school so we haven't seen much of him lately.  He is a terrific daddy to our kiddos.  They love it when he gets to stay home and play with us.  He has been playing basketball in the mornings with some teachers at his school and loves being physically active. 

I'm looking forward to Summer!  I've been dreaming of living in my swimsuit and eating lots of yummy Summer fruit.  Mmmm!  

Ashley

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