Frustrated

I wish I could give a better update than this, but I just don't know...


I'm frustrated



Pardon me
This is more of a venting of feelings than an official update



Hazel's face looks good
But she still has patches all over her cute little body
She still scratches herself all day...
every day



She only gained .5 oz. this week
That's like what?
A grape?
Failure to thrive
Those are hard words to type



She's still throwing up
At least once a day
Which is much better than 20+ times a day
but frustrating



Neocate ®™ is expensive
But it makes her so much happier
But so expensive



Insurance would cover a feeding tube
and the surgery to put a feeding tube in
and Neocate ®™ if it were fed to her through a tube
but not if she will eat it from a bottle
which she does
quite well, I might add



It's absurd



People keep calling me strong
and courageous
I'm not
I'm scared
and I cry
a lot



But, we met with Kids on the Move
and they're AWESOME and make me feel capable



And Hazel really is adorable
and funny
and so worth it



And Cannon is smart
and hilarious
and sweet



And Jarom is so wonderful
and supportive,
and snoring right now



And my family/ward members/blog readers/facebook friends/
strangers I met online while googling "eosinophilic esophagitis" for the 800th time
are amazing people
who have just the right words



And Heavenly Father loves me enough to help me gently learn
how to be a mom
and how to be a bit pushy
and how to get what I want
and how to want the right things
and how to listen
when I just want to scream



People are good. Yes, I know Heavenly Father loves me.

(I've read through this a few times and I can't decide if I want to hit the orange "publish post' button. I think I will. But please don't judge me.)

Stuff

Here's some stuff I didn't know how to order or title, but still want to share.

Cannon. This was taken while he was in time out. I love it. Not much has been said about Cannon here lately. He's been a real peach during all the visits to Doctors and Hospitals. He'll pretty much do anything for a dumdum - and I'm not above bribery at all. He's been potty trained since October. He figured it out all by himself and I couldn't be happier about it. He talks like a grown up a lot of the time. Sometimes he uses the funniest phrases. He is OBSESSED with helicopters. He has 3 that he sleeps with each night. He points them out in the sky all the time. We live near a military base and they fly over our little valley all day. He loves riding on the 3-wheeler with his daddy. He's such a boy. He has no fear. He can be a stinker, but oh, I love him so.

Hazel. Yes, I know she's all I talk about, but she's such a happy thing. Her hair? Yes, she rivals Albert Einstein. I don't know what to do with it. It just keeps growing like that and I'm afraid it's my fault. One day she will curse my name for passing on my curly headed genes. She's completely content to be held all day. She loves her 'mum mum' but daddy is growing on her too. They love snuggling at night while watching Spike tv. She absolutely adores her older brother and has developed a high tolerance to being wrestled, bumped and smothered with affection.

Us. PLEASE don't tell Jarom I posted this picture. He'll never speak with me ever again. He hates it of him, but I think it's fun. He's just standing weird. We got to chaperon the night dance at his school and got our pictures taken. Cory Adams. Yep, the same one that did all my high school dances. Good times. I'm glad I'm not in Junior High anymore. I'm also glad that I get the opportunity to people watch at a Junior High dance. I saw a couple break up and get back together 10 minutes later. Good times...

Medical Bracelets. I get to have one made for Hazel with information about her allergies. I thought of those ugly gold ones that they have displayed at the pharmacy, but I found this website that makes adorable medical alert merchandise. I think I might order a plain tag and then make some interchangeable bracelets to match different outfits. Kind of like those cute watches with the interchangeable bands.

Hazel Update

This is just some more stuff about Hazel, if you're interested. She's been on the formula for 13 days and her eczema is really clearing up. She still scratches like crazy so I know she's still itchy. Her skin is so beautiful. Her eyes look so blue. I can't believe the difference.

We go in each Tuesday for a weight check and a blood test to check for more allergies. Last week she had gained 13 oz!! Almost a pound. Amazing!

Through some more testing, we found out that she's also allergic to almonds and oats. She's NOT allergic to walnuts, pecans and rice.

I found some rice rusks that she absolutely loves to nibble. She also likes dried apples and bananas.

Can I just say that invisible specks of food on the floor are the bane of my existence? Seriously, I have a panic attack every time she reaches for something and sticks it in her mouth, which is like 56,000 times a day. Maybe someday I will chill out - but images of my little swollen Hazelnut make me shiver each time it happens.

I am so thankful for my network of support. I have talked to so many people who have similar experiences with allergies and dietary issues. It's hard, but so much easier with people who care and have "been there".

Last week we had an anonymous case of Neocate show up on our porch. I have no idea who it's from, but THANK YOU if it was you. You made me smile and cry at the same time. It baffles my mind that someone spent $150 or more to send our sweet Hazie love-in-a-box. Seriously, you rock, whoever you are.

Also, just a huge thanks to everyone who has commented, called, prayed, and sent cards. We are blessed to have you in our lives. I finally feel like my life is getting back to 'normal'. I might even do some laundry to prove it.

So remember how I have this blog? Oh, yeah. Me too. Apparently when there is stress in my life the blog is the first thing to go.

This is probably going to be a wordy post. I’m hoping to explain in a nutshell (ok, like an elephant sized nutshell) what’s been going on.

You see, my darlin’, sweet Hazel has always had really really bad eczema. Like, it’s bad. She scratches and bleeds and it’s all over her body. Ever since she was 2 weeks old I’ve always known there was something wrong but couldn’t quite put my finger on it. I’ve asked since she was about 4 months old to have her tested for allergies. I even tried going without dairy for a few months and it didn’t really help a whole lot.

About 2 weeks ago, she was quite sick so I cancelled preschool and took her in to see the doctor. Luckily, it was just a cold along with some respiratory stuff and asthma. But something that struck me was her weight. She was 15 lbs even. I remembered that she had only weighed 15 lbs at her last checkup in December and the PA confirmed that she’s actually been 15 lbs since a sick visit at the beginning of November. For an infant, 4 months is a long time to go without any weight gain. She has plummeted from the 95^th percentile to the 5^th. Scary.

A week ago at her 9 month checkup, we brought up the weight thing with the Dr. He was concerned and gave us a few options. We could stop breastfeeding for 3 days and go with a high calorie/hypoallergenic formula to get some weight on her or see if it helped (my last choice); have her allergy tested; see an allergy specialist; or a combination of all of these things. We opted to have her RAST tested. RAST is a blood test where they mix blood with a number of allergens to see if the body retains necessary antibodies to guard against anaphylaxis aka an allergic reaction. We also took home a sample of some hypoallergenic formula.

So, we went to the hospital for the test, dropped Jarom back at work and I took the kids home. I put Cannon in bed and made Hazel a bottle. I sat with her while she guzzled down 2 oz. of the formula. After a minute, she wasn’t interested in the formula anymore so I put her down on the floor and noticed she was scratching her head like it was on fire. Not 30 seconds later I noticed a patch of raised skin on her forehead, then her lip, then her arms, legs and pretty much covering her body. I frantically called the nurse and Jarom simultaneously with one phone to each ear trying to explain the reaction. I noticed Hazel was slightly wheezing. Not good. I hurriedly put both kids back in the car. I stopped at a neighbor’s for some Benadryl. The nurse told me to go to either the ER or Doctors office (whichever was closest). I told Jarom to meet me there. He did and we were met by two Doctors and a nurse as they quickly checked her breathing and oxygen levels. Luckily, the reaction began to subside as the Benadryl kicked in. The Doctors seemed befuddled that she had this type of reaction to a “hypoallergenic” formula. They decided to put her on some steroids for the weekend and wait for the results of the RAST before taking any more action.

Fast forward to Monday. We got the results back from the RAST and were shocked to learn that Hazel has severe food allergies to: milk, eggs, wheat, peanuts and soy. She has a slight allergy to corn. The “hypoallergenic” formula is made from a soy and corn base.

Tuesday we met again with her pediatrician and an allergy specialist to confirm the results of the test. They jointly decided that breastfeeding is not an option since there is no way for me to eliminate that many foods and still make an adequate amount of milk for her. She was immediately put on an amino acid based formula containing no allergens. Basically that means it’s nasty tasting and freaking expensive. We were ordered to the hospital for further allergy testing for tree nuts, rice, potatoes and oats.

We learned that food allergies are not necessarily genetic and there was nothing we could have done to prevent them. She is one of the worst cases the allergist has seen in his 30 year career. Each time a person is exposed to an allergen, the anaphylactic reaction gets worse. Even a small amount can be deadly.

Currently, she is thriving on the new formula. She has already gained 3 oz. and her eczema is fading. I’ve never seen her sit contently in her high chair without scratching her scalp wildly until yesterday. We are supplementing with a number of fruits and vegetables that we know she can eat.

Our first priority is the help her gain some weight while avoiding any more potentially fatal anaphylactic reactions. We were provided an epi-pen in case of a reaction. I have joined a support group for families in Utah dealing with severe food allergies. We are trying to learn as much as we can about dealing with a new way of eating and living. I’m comforted by the fact that most people outgrow at least a few allergies by the age of 4 (milk and eggs). We know that soy and peanuts will be lifelong allergies.

Hopefully by the time she turns 1, she will no longer be on the “diamond dust” formula and she can enjoy some healthy almond or rice milk in her sippy cup. I’m overwhelmed but happy that this is something we can control and I know it will get easier as we go. I feel like in many ways, we have seen the amount of love and support from many family and friends. I’m looking forward to educating myself on preparing nutritious, allergy free foods for my sweet Hazie girl.

So, if you fasted, prayed, thought about or inquired about Hazel these past few months… THANK YOU. You will never know how your support helps. We have been humbled to know that Hazel is loved. I will try to keep more updated from now on. I can’t promise anything, but I will try.