It’s been awhile….

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I haven’t known what to say for awhile. I feel like I never know what to say.  I don’t like to dwell on hard things, but I guess hard things were what started this blog in the first place.   I was talking to an old friend a few days ago, and she asked me where we had been, and told me that how important this blog had been to her, and how it was time to write again.

Originally when I started this space, it began out of a scary worry, and looking for answers. Back then, there were about 80 families with an FPIES diagnosis in the U.S, now there are hundreds.  We didn’t know what was going on, and I was scared all the time.  Wyatt is six now, and everything has changed, and nothing has changed.

He is amazing, and funny, and so positive.   He still is never more than a couple inches away from me, and still in love with his sister.  He is such a smart boy, works so hard in therapy every week.   He’s gotten a few more firm diagnosis’s since we started out in this journey, and still so much we haven’t figured out yet, but each and every day with him is the best day of our life.

The older I get, the more I realize that everyday we are alive is an absolute miracle, and such a blessing.

As an added funny, he licked me right after I took this picture, he claimed he was trying for a kiss.  I don’t buy it, he licks everything.  gotta love sensory seekers.

I’m going to try and know more what to say, or at least, be here more.   But in the meantime, we are still here, He is still amazing, and life is a miracle.

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GFD 2017

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Today is Global FPIES Day. I always get a little melancholy when it rolls around. Sometimes it feels like my life is so small, and that I have such a small impact on the world as a whole. When the nights get long, and the kids are up sick, and the weariness sets in, I let fear lie to me, and I start to believe that it will win. But joy always comes in the morning, no matter how dark the night. And although my life may be small, and my impact smaller, and although fear sometimes keeps me up, and steals my joy for a dark hour, when the light comes, as it always will, I see my life more clearer, and more hopeful than the nighttime hours made it seem.

Six years ago I gave birth to a tiny baby, a little boy who changed the entire course of my life. The moment I found out that he and his sister would be mine, all I wanted for them was a life filled with perfect wonder. I had no idea then the course our life would take, and the extreme trials we would face together. 6 years ago I had no idea what miracles we would see, or how something so unknown would knit us tighter together. I had no idea that our dawns would be brighter and more hopeful than the dark painful nights, that I would learn what really matters, and what pure unconditional love was. I couldn’t have comprehended how our family would shift, and change, and how together, love would change our lives.

Life can be so hard, and the nighttime hours can seem so dark they nearly suffocate us. But joy comes in the morning, and the morning will ALWAYS come. We can never know what trials will come into our lives, but I truly know that every day we have together is an absolute miracle.

Don’t Even Get Me Started on the Potato Salad

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On any given day, I see at least five crowdfunding pleas for help with medical bills.  Usually, many more.   Sites like gofundme, youcaring, and others like them have seen a huge spike in crowdfunding for medical related costs.   Some of these are asking for simple help to replace broken glasses, some are asking thousands of dollars to help deal with ongoing serious medical issues.   We all see them, most of us wish would could donate to every single one we see.

When Wyatt’s formula was denied by the insurance, the most common question people asked me is if we started a gofundme page (I did not).  In our little community, it’s very common to see links to crowdfunding for chronically ill children’s healthcare costs that are simply too expensive for the average family to absorb.  I fear this will only get worse with the reversal of ACA and the limit to pre-existing conditions.

One of the most terrible, ignorant, and mean spirited, not to mention selfish defenses of this reversal, and the subsequent cuts to Medicaid and Medicare is to force low income families to quit “living off of the government” be self-reliable, and eliminate “welfare queens”.  (I find it ironic that statements like these are made by men who have tax payer covered lifetime FREE healthcare). Let me just stop you right there.  Many families who have Medicaid have it because they live with chronic illness.  People who are on Social Security for disability in states like mine qualify for Medicaid, because of the high costs medical care chronically and severely ill people need to stay alive.   Are cases of welfare fraud there?  Absolutely, this is not a perfect world, but research has proved that the rare fraud cases are vastly outweighed by the real need cases.  The two stories that the over inflated, (fully TAXPAYER medically covered) well paid Senators can dig up to throw around on Welfare Fraud are both outdated, and out of the norm.

Cutting Medicaid and Medicare puts those who are most vulnerable at even more risk, it perpetuates the much-hated cycle of poverty, and makes illnesses that could be well managed for the best quality of life, and ability to provide for a family, immediately life threatening even more expensive, and unmanageable to the point where people will die from lack of access to quality and continued health care.  Yes, it’s true that anyone can go to the emergency room and receive care by law.  But that ER bill?   If you can’t pay for regular health care, how will you pay for a $600+ ER bill?   People who would have had access to their regular doctor, for regular health management will be severely limited in the health care they will be able to seek, and will likely wait until they are in a life-threatening stage until they seek care from the ER, because they have to serve them, even if they can’t pay.   Does this mean they won’t receive a bill?  HAHAHA.   No, just because the ER has to serve them, does not mean they will do it for free.   So, the choice comes then, seek medical care from the ER, or feed your children and have a place to live.

Do we really live in a country that people have to ask themselves, “is it cheaper for me to go to the ER, or to die”?  Because ultimately, that is what low income families have to face, how long can you wait before you HAVE to go in because the money just isn’t there, and if you wait too long, you could very likely die.

When did we become a country that has become ok with gofundme accounts for healthcare?  When did we decide that because someone had the luck of being healthy and therefore could afford to have a home and low debt, that their life mattered more than someone with a pre-existing condition, who is uninsurable, and whose family has amassed a huge amount of debt and have or will bankrupted themselves to keep their child alive.  Why are you, in your comfortable home, vacations to Disneyland, more important than a child with a chronic illness?  Since when did we think it was ok to cut healthcare, and force the humiliation of begging strangers for money so we can live, instead of helping as many people as we can?

How long would you survive without access to quality healthcare if you suddenly had a horrific car accident, or found out after a relatively healthy life that you had cancer?   Do you understand that we are ALL so close to being lumped in with so called “welfare queens” and drains on the system, (because apparently those defending these changes, cannot seem to understand the difference between the few fraudulent claims and truly needy people)?  Don’t you understand that no one’s life is more worth living than another, and children, the elderly, and the ill suffer the very most from the privilege of the healthy.

Remember kids, no one’s life is worth more than another, people don’t chose to be sick, and children do not deserve to suffer because you are selfish.  Check your privilege, remember that anyone can get sick, being so angry about people needing help will only make you a terrible person and give you an ulcer, and show up for people, because you might be the only one that does.  We are humans, don’t lose your humanity.

And don’t even get my started-on people being more willing to donate money to a crowdfund for potato salad than they are to someone who is dying (but doesn’t have too)…. We’ll save that rant for another day.

On being normal…

Sometimes I forget how NOT normal our life is.  We have our groove, our system, and the way we make our life work. It’s not perfect, and it’s not easy.  We sit out of a lot of “normal”, because it’s easier sometimes.  This time of year especially, there is a lot that we do not do, a lot of places we don’t go, and so many people we do not see for months at a time.

We have fun together, the three of us. Most days spent with them are a blast, and we love to laugh.  Wyatt’s turned into quite the prankster in the past few months, and he lives to tell jokes, make us laugh until we cry, and the stories, oh his stories.   This kid is full of one liners, and I never grow tired of them.  He’s naturally a tinkerer, a dreamer, and full of wonder at how and why.

Tonight we had our Trunk or Treat at our church.   I took a bunch of little toys (finger lights, dinosaur toys, etc) so people could hand them out to Wyatt and he could have a night of “normal”.  Gram made him a new Star Wars mask to wear with his Han Solo costume, a costume that every detail was agonized and speculated over for the past month.  We didn’t go to the dinner portion to try and keep him from the food and extra germs as much as possible.

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This has been all he has talked about for days… days.  Tonight, as we wandered from car to car, pumpkin pails in hand, I watched my kids with wonder.  I was at ease knowing that he would get some treats, even if it wasn’t from everyone.  Reagan was relaxed and didn’t feel guilty accepting a treat when her brother would have none.  But, Wyatt.   I cry just thinking about him.  Words cannot fully describe the joy on my boys face.  The pure, unheld back joy on his face, I will never forget it.  Watching his jump up and down realizing, finally, something just for him.  His sweet voice, a smile I cannot get out of my heart.  Just being 5.  There aren’t many moments in public that he gets to just be 5.  There aren’t very many moments he gets to do what everyone else is doing, and just be the kid he deserves to be.

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I’ve been choking back tears all night, at a moment that most won’t even think about 24 hours from now. A moment so normal to childhood most put little thought into it.  At five years old, it’s a moment that’s never happened.   Several people bought him special prizes, those ones choked me up, because it meant they purposefully went out of their way to think of my child.  To allow him to be just five years old for an hour.

All night he’s pulled out the toys from his pumpkin pail, looking over each one, his smile so big, showing anyone who comes into the room. Tonight, he fell asleep with finger lights on his fingers, glow in the dark spiders in his bed.  Tonight, my boy got to be just a five year old boy in a rockin’ homemade Han Solo costume.  Never have dollar store trinkets been so valuable.

We Are the Voice

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In many ways, having a child with FPIES has made our world so much smaller.  We keep to ourselves especially in the fall-spring.  Our friends group is small, but tight.   In some ways, it’s made our world bigger.  Wyatt’s first plane ride was to a new hospital for special testing and to see a new doctor.  Many of our “vacations” are for medical trips/testing. Because of FPIES, Wyatt (+Reagan and I) have special friends in far away places like Pennsylvania, Minnesota, Israel, India, and Turkey.

The friends that I have gathered in our thin raft are our life line.  No longer is it just me, spending sleepless nights, holding a sweating, screaming boy, helpless, and searching for answers.   Because of the friends in our thin raft, my son will always have someone in his life that knows exactly what he is going through, and exactly how he is feeling.   This thin raft has become the foundation we have used to rebuild our life, and make both Reagan and Wyatt’s childhoods what they should be.  Times of joy and wonderment, filled with people who love them, understand them, and never forget them.

For so long, it was just me in this raft with my two most prized possessions: Reagan and Wyatt, singing a song that sounded awful, even to me.   Now, our voices are joined with those we love the most, and who have loved us back.  Life isn’t easier, life is hard, it’s just like that, but when you’re surrounded by the ones you love, it’s worth it.

Whatever you decide to do in your life, use your voice to strengthen the voices of those you love.  Climb into a thin raft, sing your song, and those who love you the most will join you there, and that song will be the most beautiful thing you’ve ever heard (even if you’re singing next to me).  Those people who climb in with you, singing their hearts out, bailing water out when you’ve sprung a leak, and rowing harder and harder when the waves, rain, and sea are coming for you, will be the ones who will never let you drown.

It’s a beautiful thing to find your people.  Don’t let them go, and honey, keep singing, because your voice is beautiful.

 

Choose Your Own Adventure

(or, the further adventures of Buzz Lightyear and Mrs. Callowag)

It has been a looooooonnng winter.  It truly felt like it would never end.

We spend a lot of time home-bound in the winter, and at the doctors office. Our record was six times in five days this year.   We try and find fun things to do, but no matter how creative you get, cabin fever is real and you just have to have a break.

The kids and I have been planning our spring break trip since August.  We were going to spend ten days in Idaho with my sister, and further explore Yellowstone and the Tetons.   We had every detail planned out.  So what do you think happened the week before we were planning on leaving?  That’s right, bronchitis and Influenza, the real deal.   I was crushed. Because of another immune compromised person out there, I knew we couldn’t risk it, even if the kids were by some miracle better by the time we got there.

Plot Twist! (I’ve taught the kids to say that whenever our plans change, and they change a lot!).  I decided to postpone any kind of trip for a few days and let the kids get past the illness and the incubation period so we wouldn’t risk passing it on.  But while I waited, and got them better, I planned.

Instead of our great Yellowstone/Tetons adventure we had been planning, we planned out a trip a little closer to home.

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Monday, once I was sure they were better, and weren’t contagious, we loaded up the car, and got the heck out of Dodge.  It was the best choice.

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We headed south to Bryce Canyon National Park, and then further south to Zion’s National Park.   All in all we spent seven days exploring and being together.  It was not without many plot twists (including an FPIES reaction, blizzard, and POTTY TRAINING), but it was magical, and we had the most amazing time together.

 

 

I had many moments where I felt slightly panicky, for being so far away from trusted drs, and hospitals that know us.  It was a huge step out of my comfort zone, but I was very well prepared.

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Never underestimate what a camera will do for a six year old’s self esteem. I heard such gems as “This should be in a magazine!”,  “I’m so good at this!”, and “Wow!  Look at me!  I’m a real picture taker person! And I’m good at it!”.

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Another fun thing for kids is participating in the National Park’s Jr. Ranger program.  We did programs in both parks, and the kids had a blast. They are free, and in the end they get sworn in, and get a free Jr. Ranger Badge.

**Can I let you in on a little secret, fellow parents of medically fragile children?  The National Parks will give you a FREE *LIFETIME* National Parks pass (to every National Park!) to anyone with a life long disease, disability, sensory issue, or disorder.   All you need is a note from a doctor or therapist explaining the need/diagnosis.   This saved us more than $100 this trip on Park fees.   Go here to find out the info needed, or feel free to contact me, and I will help you find a station near you!

2nd Annual Global FPIES Day

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Today is Global FPIES Day. For me, this is not a celebration, but a somber reminder of what my son has overcome in his four short years, and a reminder of what more I need to help him through. I’m grateful that social media connects other FPIES families with us, and that through them, we find support and strength. I’m grateful for those understanding family and friends, who love my boy and want him to be healthy. I had hoped that we would be further than we are this year, but I am so grateful for the strides we have made. If I could tell my friends one thing to remember it would be this: No child is the same, no family is the same. Be patient, be kind, and always, always reserve your judgement, because you will never fully know the trials other people have. At the end of the day, we are all just walking each other home.

Summer

Hey all!  We’ve been crazy over here trying to soak up as much summer as we can!  I’ve been in school full time this summer, and tried to take advantage of my free time doing fun things out doors with the kids.

We’ve had a full summer of some big food trial fails, losing Wyatt’s pediatrician who moved back East, fighting for insurance coverage, and just trying to have a normal summer.

Wy’s be doing alright on the new formula.  Enough to gain some weight and height which is awesome!  I’m praying every day that he is healing internally. His skin looks a bit better, and his color is better except with the food trials.  He’s been still struggling with his lower GI issues, but we are working on some solutions to that, that I hope will at the very least lesson the symptoms.

His last heart study showed some improvement with the formula, but still some problems, so we watching things for now, and hoping we can stall surgery until he is a little older, and can avoid open heart.

It’s the first year we haven’t had to take a huge medical trip in the fall, so we are greatly celebrating that!

My big boy turned FOUR in June and had a wonderful birthday!  We have been very blessed this year.  We’ve had some big set backs, and struggles, but I am continually grateful that we have been able to keep him this well this year and off of TPN.  I can’t help but look back to where we were in the beginning of this journey, how little support, knowledge, and hope we had.  It was a scary time, and although I still have scary times, I know that we will be able to have the courage to face what comes.

We’ve been able to come in contact with some older kids dealing with this disease, and although the circumstances are less than ideal, it has given me hope to see them live a life, and helps me be grateful for every day I have with my son.  And, I know that we are very lucky, lucky to find others to help pave the path for us, lucky to find strength, and lucky to have been able to find our stride in all of this.  I’m lucky to have such a happy and loving little boy who is so brave and strong.  I’m beyond lucky to have my sweet Reagan in my life.  She is as fierce of an advocate for her brother as any nearly 6 year old I have ever seen, and I would struggle without her calming and hopeful presence in my life.

Wyatt will resume his therapy next month, same schedule, different therapist, and I am really excited to see the progress he will make this year.  I am trying to find an OT for him, but it’s hard in this area to get one.  There just aren’t many in our little spot of the world.  But, if all else fails, we carry on with the things his Early Intervention OT taught me.

We plan on taking full advantage of the last few free weeks of summer while we can.  Hope it’s been a wonderful summer for all of you.

Big News!

It’s been a long month since Wyatt started his new formula trial! I have been hesitant to call it a success because he has been very sick all month, and it wasn’t clear what was reaction, and what was normal kid sick. Part of his disease involves immunocompromise, especially when he is having a reaction, so it can be tricky sometimes to decipher if he is sick because he is sick, or if he is sick because he is having a chronic reaction to his food trial. He also ended up having an acute reaction to one of the antibiotics he was on, which sent him into a tail spin and made him very ill.

He is still dealing with a horrific cough, but is doing well besides that and some other minor symptoms from the formula. I wish I could call it a hard pass, with zero reaction, but I am happy to call it a soft pass and hope that in time he will do fabulous on it, with no problems! Hopefully this will be healing to him, and not cause long term problems like his previous formula did. I am very hopeful. And, the best news: He loves it!

So, in case you missed it in my rambling: Wyatt has a new formula! Yay!

Thank you for all your thoughts and prayers, and celebrating his first sips with us. We have incredible people in our lives!

Let’s Talk Politics Baby

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I’ve heard that you shouldn’t ever talk religion, politics, or baseball.  Welp. Today we are going to talk politics. I promise it will be worth it, so stick it with me 😉

 

There is some really important things happening in Utah right now, and I need your help.  Right now, there is a proposed bill (HB 230) that is awaiting a committee in The Utah House of Representatives.  It’s a huge bill for families living with severe food allergies.  This bill, if past, will require insurance companies to cover amino acid formula (aka, neocate, elecare and the like) without cause for kids with severe food allergies like Eosinphilic Diseases, and potentially FPIES.  This bill would open up the doors for other needed changes in insurance for chronically ill children, and kids with severe food allergies.

Right now, insurance companies claim to cover amino acid formula IF a child is tube fed, and has no other safe food to eat.  Let’s talk about the problems with that.  First, feeding tubes are incredibly expensive, traumatizing, and require a lot of upkeep, extra doctors appointments, potential for infection, and often require a home health nurse to make regular visits.  Feeding tubes require surgery, and a lot of equipment and upkeep. Naturally, there are children who can only receive their nutrition through a feeding tube, but it should not be a requirement to have a feeding tube to have their food covered.  Amino Acid Formulas have to have a prescription from a doctor and are not readily available from the grocery store.  If a child can take a formula orally, but still can only tolerate a formula, why should an insurance company deny coverage to them just because they can take a formula orally.  Orally taking a formula saves the insurance company money, but also helps a child with texture, sensory needs, and many other important developmental skills.  Insurance companies claim that they cover the formula if it meets their very strict guidelines, but the problem is, they often still will not.

The other thing insurance companies are restricting is denying children who have 1 or two safe foods, but rely on special formula for the bulk of their nutrition.  2 foods (we are talking mere ingredients, not pizza) does not a diet make.  They also like to start denying children who gain any sort of weight at all.  Tell me how this makes sense!

Children who are exclusively on formula, are already chronically ill, and their expenses are already astronomical, but add $60(+) a day for formula that isn’t covered through insurance, and it’s just not possible.  Parent’s of chronically ill children spend hours a day on the phone with insurance companies, and writing appeals. It’s a hugely time consuming project for parents who are already strapped for time.

This bill is so important.  But we need help, and we need voices.  The moms in this small community will put every moment of very precious free time into making this bill work, but we need all of you to help.

So, how can you help?  Well, let me tell you!  It’s easy, and only takes a few minutes.

Here are the key players in getting this bill assigned to a committee:

Carol Spackman Moss csmoss@le.utah.gov
Gage Froerer gfroerer@le.utah.gov
Brad King bradking@le.utah.gov
Jon Cox jcox@le.utah.gov
John Knotwell jknotwell@le.utah.gov
Jacob Anderegg janderegg@le.utah.gov
Mike Schultz mikeschultz@le.utah.gov
Rep Weeks eweeks@le.utah.gov
Rep Howe jdhowe@le.utah.gov
Michael Noel mnoel@kanab.net

 

Write them an email, and tell them why it’s so important to pass this bill.  (I’ll include a form letter you can use, or feel free to write your own).  Once this is assigned to a committee, call or write your representative and tell them how important this is to you.   Talk about it on facebook, to your friends and family, tweet about it, blog about it.  Let’s help people to understand what the purpose of this bill is, and why it is needed.  This is so important my friends.  Will you help?  If you have any questions, please feel free to email (jessiemae84078@gmail.com) me, or contact me on facebook!

Subject Line:  In support of HB 230

Form Letter:

To Whom It May Concern,

I am writing to ask you to release HB 230 Coverage for Eosinophilic Disorders, and assign it to a committee.

Currently formula is not covered orally for children with severe food protein allergies such as Eosinophilic Disorders, and other severe allergies like Food Protein Induced Enterocolitis Syndrome, like my friend’s son Wyatt has. He has absolutely NO safe food to eat and is reliant on formula that their insurance will not cover. They claim they would cover it if he was on a feeding tube, which is less cost effective and causes him more bodily damage than oral feeding. It just makes sense to cover formula orally for children who’s doctors have exhausted all other options.

Thank you so much for your time.