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.

FPIES Friday: Meet Colton

I have a little bit different story for you today.  Today’s story is about my friend Wendy, a fierce mama, who fought for her son Colton.  Colton story holds a lot of hope for mom’s like me, because Colton grew out of his FPIES.  I’m so grateful, humbled, and blessed to share his special story with you today.

Meet Colton:

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Colton eating his first bites of rice cereal

Our journey started the same as many parents with our 2nd child, Colton. We gave him his first bites of rice cereal about 5 mos old. The first day he only ate about a bite or two. Seemed to play with it more than eat it. We tried again a few days later, and were able to get some into him. Two hours later he was vomiting for an hour. It scared me as I’d seen newbies spit up but never vomit so much for so long. I chalked it up to a GI illness of some sort as it was late winter/early spring and I work in health care as a social worker so I figured I could have brought something home. Gave it two weeks. Hubby tried again when I went to work. I got a call at work from my husband…Colton was doing the same but this time turned blue around his lips. While he was on the phone with me, color returned to normal and he again slept it off. We called the pedi who said if he was back to normal color not to worry, and made an appointment for us for the the next day. He asked questions, then told us it must be a bug because kids aren’t allergic to rice. Told us to try oatmeal. To this day I wish I’d googled before trying it. We did the oats a few days later. I was on pins and needles and right at the 2 hour mark the vomiting began. I cried while I held him over the sink and he wretched and wretched. UGH! I didn’t call the pedi…that was when I turned to google. Typed in “infant vomits rice and oat cereal” and result after result was about FPIES. When I went back to the pediatrician, I was armed with info. He wasn’t buying it but was open to allergist involvement. The first allergist we saw in our home town told us he couldn’t have FPIES because he didn’t have the mucousy diarrhea, and because I wasn’t on an altered diet and he was taking breastmilk just fine. He told us without those additional symptoms it wasn’t “true” FPIES and sent us for bloodwork. A GI scan. More blood work. And still more blood work. He was tested for all kids of disorders, and everything was coming back negative. After the third round of bloodwork and having to hold my poor baby down while he screamed even before he saw the needle because he knew what was coming, I said enough is enough. I called another local allergist and asked if they worked with FPIES kids. They admitted they didn’t know much about FPIES and had never treated a child with it. So I again turned to the internet looking for other FPIES mamas to help me. I found a group on FB and asked if there were any Western/Central NY FPIES families who had found a good allergist…we were willing to travel some distance if needed to find a doctor who would work with us. Several Rochester families told me about Dr Bingemann. She was a life saver. She listened. Asked questions but never interrupted. Talked about foods to avoid, foods that she saw as being more successful passes, and how to run our food trials. She also talked to us about how she runs re-trials in her office, which is near a hospital so that if intervention is needed it’s quickly accessible. Her quiet, peaceful demeanor calmed us. We left there feeling like we could do this. We could help our son.

Even though he couldn't eat it, the play kitchen food was his favorite toy,  It always made me sad.

Even though he couldn’t eat it, the play kitchen food was his favorite toy, It always made me sad.

I also did a lot of reading while we were in limbo. Between the reading and the information from the allergist, we decided to hold off on the rest of the top triggers we were reading about for FPIES kids. We also chose to hold off on all other grains. We wanted to give Colton’s gut time to develop better and hopefully the best chance at successfulyl outgrowing this wicked disease. We did 2 week trials because the next two fails – sweet potato and avocado – were both discovered about 10 days out from the initial ingestion. We would start with just a few bites of the new food, then gradually build up to a service size. I always thought I didn’t have time to make my own baby food because hubby and I worked full time opposite shifts, but I quickly learned to involve my older daughter. And I did everything I could to maintain my milk supply because I wanted to be sure I could feed him for a while until I knew if he could tolerate Milk or Soy. “Slow and steady wins the race” was my montra, and I had to remind myself that A LOT as I often grew frustrated with how long trials were and how hard it was to be preparing two different meals every night. Having to think about things like separate utensils and being on point with making sure my pasta spoon didn’t mix his vegetables when I was just exhausted after a day at work. And then I’d feel guilty because this was a little thing…he was the one who had to go through everything he was facing, and I had no idea what the future held for him.

1st birthday cake "concoction".  It was terrible, but he did eat it.

1st birthday cake “concoction”. It was terrible, but he did eat it.

I also hated that trialing foods is the only way to discover failed foods…and passes. It felt like I was playing Russian roulette with my child every time I tried to figure out what food to trial next. Everything was recorded because in 2 hours I wanted to be sure I could look back to try to figure out the offending food…even when we weren’t in the middle of a trial. Two hours after a meal I always found myself holding my breath. And one day when i was feeling confident that we had perhaps hit a good set of passes in a row and that maybe, just maybe, we were on our way to a regular diet, we had an “out of the blue” reaction. We pulled all foods eaten the meal before and slowly reintroduced them one at a time to figure out what caused it. I cried a lot…I knew something was going to cause him to vomit and I hated that, but I also didn’t want to withhold some of the foods he loved out of my own fear. And he tolerated them ALL! We ended up having to chalk up to “getting a crumb or a bite of something from his older sister” because each food when reintroduced went well. I was so happy!!

Once he was 13 months, and we had passed trial after trial for months in a row, I went for it. Dairy. Pass. Soy. Pass. Beans and Peas. Pass. Corn. Pass. I was again growing more confident. Another boy’s mom and I had been in communication and she encouraged me to go for wheat. I was scared. So scared. But again I didn’t want to withhold something that could open a lot more food options…so we took the plunge…and passed!!

At our one year follow-up with the allergist, I asked if I could start speeding up trials, or doubling up on foods. He hadn’t had a fail since 9 mos of age, and he was now 18 or 19 mos. I really wanted to throw in the towel and say he was FPIES to only 4 foods, but she was conservative. “If it’s not broken, don’t fix it.” I was going to honor that…I truly was…but it was almost Christmas and I really wanted him to have chocolate with his cousins. So I trialed Chocolate 1 week after starting a new food, and after 3 weeks we had 2 passes…and then I continued dual trialing. We would introduce a new food week one, week two continue the new food but start a second food. Week 3 we would call the first food a pass, continue trialing the second food, and start a third food. And so on. I resumed keeping a journal just in case, but it was great to see him flying through more and more trials. After a time of doing that, and amassing a list of passed foods that we had to write down because we could no longer remember them all, and because he still hadn’t had a fail since the age of 9 mos, my husband and I decided after a long conversation to stop trials. To give him what we were eating. We haven’t looked back.

Many of my "milestone photos" were food milestones.  Here is the first pizza...we used a wheat crust with a safe sauce and cheese.

Many of my “milestone photos” were food milestones. Here is the first pizza…we used a wheat crust with a safe sauce and cheese.

This past July, just before his second birthday, we moved 40 minutes away so I could be closer to work and more babysitters. Life was hectic and we didn’t realize the formula changed in the V8 juice he had been drinking. When my husband rinced the bottle for the recycle bin, he read the ingredients. They had added sweet potato. We didn’t catch it for the entire bottle…about 2 weeks. NO REACTION! I called the allergist in Rochester She told us to do what we felt comfortable doing. We decided to tempt fate and do a retrial. I wanted to do a 3 week trial just to be sure…and he passed!! Two months later I threw caution to the wind when he wanted the rice on my plate from a chinese take out dinner….he didn’t throw up and passed a reatrial over the next 3 weeks!!! We then tested oats and it was the same…no fail!! We still have avocado left but I’m heading into this trial with my head held high. And optimistic that we will have great success rather than worried that my son will vomit.

FPIES has changed me. Changed our family. Before we were thrown into the world of food allergies, I didn’t realize how just a crumb of a food item on a playground can affect another child. I didn’t realize there were allergies beyond peanut allergies. I never thought twice about how my picnic could negatively affect another child. Now I think about it. All. The. Time. I try to be mindful of our eating area. Cleaning up thoroughly. Washing hands after eating and before they can go play again. I don’t take for granted that we can go to the local children’s museum again – we couldn’t before because there is a rice table and the rice is EVERYWHERE. And I no longer take for granted the fact that we can share a meal that we can all eat together as a family. Well…for the most part…because as we outgrew FPIES we discovered Colton is IgE to peanuts. So we still have to work around that. But while this is a more life-threatening allergy it seems easier. It’s understood. It’s recognized. I don’t get the funny looks that I did when I listed his allergies as “rice, oats, sweet potato and avocado.

Many of my "milestone photos" were food milestones.  Here is the first pizza...we used a wheat crust with a safe sauce and cheese.

Many of my “milestone photos” were food milestones. Here is the first pizza…we used a wheat crust with a safe sauce and cheese.

 

wyattandbuzz

It’s nearing midnight, I think I *might* have finally gotten Wyatt down for a couple hours.  I snuck some popcorn and a sprite (don’t judge me), and I’m contemplating some Gilmore Girls.

I know, I know, I should be catching some sleep while I can, but sometimes you just need to breathe for a minute and be.

Global FPIES Day is tomorrow, and it has made me think a lot about the past three years.  A little over a year ago, Wyatt got his diagnosis with FPIES.  It has been a wild ride.   We have had some really, really hard and trying days in the past three years.  The early days felt very hopeless, and were very dark.

But… there have been some incredible blessings that have come. In fact, the blessings that have come, have outweighed the trials in many ways.

This disease has forced me to reevaluate my whole life, has helped me prioritize, be more patient, find my strength, and the voice I needed for my child. It grew my faith into something stronger and more meaningful than I ever knew before.  It changed my purpose and focus as a mother, and helped me learn to embrace goodness, hope, and changed my definition of perfect days.  The dark days are hard, and weigh me down, BUT, they have helped me celebrate and recognize the bright days, and even the partly cloudy days, and rainy days even more.  They have helped me not take things for granted, have helped me to let go of things and people that are not meant for me, and have changed my attitude about life in general.  I have so much more sympathy and compassion for people that I never had before.

I am not a perfect parent, or a perfect person by any stretch of the imagination.  I fail everyone, every day, and I have so, so much work to do to be the person I want to be.  But, I am so grateful that Wyatt came into my life, I am grateful he taught me incredible lessons in strength and perseverance. I’m grateful that Reagan made me a mom, and helped me grow and has been patient and understanding. I’m grateful that she is such an incredible adapter, and has taught me to see the world through her incredibly happy and positive eyes.  I’m grateful she taught me to be a mother and reminds me everyday how wonderful the world is, and how special our life is.

Global FPIES Day is such an important thing to those of us living every day with this disease and brings awareness and support to other families who are struggling.  It’s an important first step to even have a name for what is happening to your child, but to have a day, when people stand up and support you, that is priceless.

I can’t believe the support and love Wyatt has in his life, and that I in turn have received in mine.  That boy is so loved, and deserves to have the best life, and a happy healthy life.  Keep sharing, keep talking about FPIES, you are not only supporting Wyatt, and me, but you never know who might be looking for a name for what is happening to their child.

Don’t be afraid to help someone, hold someone up, and offer respite.  So many people are hurting, and need someone to be there for them.  So many people need you, and need your voice.

Be The Voice

Anyone who follows this page, or knows my family personally should know by now that my sweet son has a rare disease called FPIES.  For Wyatt this means that virtually all food makes him incredibly ill, causing him to vomit until he goes into shock, have diarrhea until he goes into shock, cause heart problems, extreme weightloss, and a myriad of other serious symptoms.  It is a serious disease that affects children and some adults.  The problem is, this disease is not well known, even among medical doctors and hospitals.  There is a serious need for research and voices.

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This is where I need your help. I’m asking for your help.  This sweet boy, and many other kids need support, they need funding for research, and they need your voice to bring awareness about them and their disease.

Many of you have asked me, “But how can I help?”  First and foremost, be willing to share about FPIES. Whether it be on Facebook, Twitter, Instagram, Pinterest, or word of mouth, just talk about it.  Tell people about Wyatt, and other kids with FPIES (ie, share the other stories of kids I have shared on here), the power of a photo and story are of more value than you know.

October 14 is the 1st Annual Global FPIES Day, and in honor of it, I’m asking everyone of my friends to share Wyatt’s story in whatever way you would like to, talk about him, share on Facebook, however you can.  Let’s start the conversation about FPIES!

I’ve been working on two incredible projects with some dear friends of mine.  If you don’t feel like you are able to contribute, will you at least share it?  As you know, I feel so much gratitude to The FPIES Foundation.  They are doing incredible things, and their work has helped my son more than I can ever express to you in words.

I’m so excited to show you what we’ve been working on!  As I mentioned before, October 14 is Global FPIES Day, and I am asking everyone of you to “Be The Voice” on that day, and raise as much awareness for FPIES as we can.  Part of how I’m asking you to do that, is to check out these two fundraisers I have put together.

The first is this awesome shirt (only $15+shipping, and can be shipped internationally!!) It was created exclusively for Global FPIES Day, and is a limited addition, once the sale is over (September 21, 2014) it’s over, and you won’t be able to get it again.  It’s available in Mens, Womens, and Youth sizes and ships in 2 weeks in the United States (international orders take a bit longer). 100% of the proceeds of this project go directly to The FPIES Foundation for research.   Our goal is to sell 50 shirts, so I need your help!

You can purchase the shirts here:  http://www.tfund.com/globalfpiesday  They are available for purchase now!

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The second project are these super cute Jamberry Nail Wraps that I designed exclusively for Global FPIES Day this year.  They will be available for purchase tomorrow (September 2, 2014) through this facebook group: https://www.facebook.com/groups/527664017334413/

Jamberry will donate 10% of all sales directly to The FPIES Foundation.  If we meet our goal of 50 wraps sold (any wraps including the FPIES wraps), the Jamberry rep BreeAnna will donate an additional 10%, which will double the donation made to The FPIES Foundation.

NOTE: If you are not on facebook, please contact me at jessiemae84078@gmail.com and I will put you in contact with the rep helping me with the fundraiser.  

These wraps are $18.75 and have free shipping in the United States. If you haven’t heard of Jamberry Wraps, you need to check them out! They are awesome.  One set of these wraps will do 2 manicures AND 2 pedicures (on most people).  That’s an incredible deal!  They last on fingernails about 2 weeks, and on toes 6 weeks!

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(Once the fundraiser opens, you can order any other set of wraps from Jamberry, and still support The FPIES Foundation.) 

 

Will you help me? Will you help Be The Voice for kids like Wyatt living with FPIES?

“We Have This Hope”

hope

All week, I have had these words echo in my head “We have this hope…”

When I first learned about Wyatt’s heart defects, and learned he was going on an ATM monitor for a month, I prayed that they would be able to see the full problem with his heart, so that we could resolve it.

Yesterday, Wyatt had several episodes of SVT (Supraventricular tachycardia), they were bad enough to make him throw up.

When I originally talked to the cardiologist when I learned of his defects, I asked him what I needed to watch for, and one of the things he told me was to watch for spontaneous vomiting (which for a child with severe FPIES, who vomits all the time, that can be tricky to decipher sometimes) and a few other things.  He was particularly worried about vomiting as it puts a huge strain on his heart, and could cause his heart to fail.  With his history of vomiting, I have gotten pretty good at knowing when it’s time to head to the ER, but the cardiologist stressed that even one bout of spontaneous vomiting was enough to know something was not right.

When I took Wyatt to the doctor today to be checked out, he confirmed that the vomiting episodes yesterday were related to the SVT.

SVT is scary as a general rule, but when you add a child with multiple defects of the heart, one of which causes the electrical to misfire a lot, to have huge pauses in beat, and who is constantly in a state of bradicardia, the tachycardia from the SVT is an added risk.  The concern is, if the heart can’t regulate back to it’s “normal” (which for Wyatt is really low heartbeat) it does major damage to the heart, and ultimately could cause death.

I left the doctors office, with an added weight, worry, and set of instructions of when to get to the ER ASAP.

As I worked today around the house, and prayed in my heart what seemed to be constantly, I kept hearing the words in my head from Hebrews 6:19 “We have this hope…” I kept repeating them to myself over and over and over again.  I wrote them on my chalkboard in my room, and I am stitching them on my heart.

“Which hope we have is an anchor of the soul, both sure and steadfast…”

I prayed that the monitor would show the full problem, and that the doctors could then make a plan for how to help my son.  The doctor today kept telling me how lucky we are that he is wearing the monitor right now, and they are able to see some of the problems his heart is having, so that they can know when to fix it.

It’s so hard, and so scary to watch this happen to my baby.  I pray for a miracle for him every single day, but I am learning, that maybe this is our miracle.  Maybe it won’t be this miraculous healing.  Maybe instead, our miracle is each day we have with this boy, and being blessed with hard circumstances, that in the end, led me to move to a small town, with this incredible doctor that knew exactly what needed to be done to save my son, when before others weren’t sure how to proceed.  Maybe our miracle is the puzzle slowly making it’s way together, and slowly we are able to figure out all the broken pieces that need to be fixed.

I learned a lesson the other day. Reading about the miracles of Christ, praying for my own, and trying to hang on.

When Christ was told that Lazarus was seriously ill He waited two days to go to him. I personally imagine those two days being so hard on his family, and if they are anything like me their faith probably wavered in Christ pretty good.
Then Christ first goes to Lazarus’ family and comforts them and tries to bring them peace. Their brother died and He lovingly comforts them, even though He knew He would raise Lazarus from the dead.

The thing I learned from this is three fold.

First: Gods miracles come in His time, and that can be incredibly painful and seemingly hopeless to us. We will likely feel like He has forgotten us and our need.

Second, He comforts us through our trial, even as we pray for a miracle, the often unseen miracle is that our Lord knows and sees our struggles and strengthens us and helps us through it. He gives us comfort, knowing all along that He will make it right, but in the moments we feel He won’t, He brings us peace, because He understands us better than we understand Him.

Third, when He raises Lazarus he says to Martha: “if thou wouldest believe, thou shouldest see the glory of God”. To me that meant that sometimes He gives us time to struggle a bit and come to back to Him on our own and plead in faith for a miracle. Sometimes He comes seemingly much too late, but He always comes. The Inbetween time is the time for us to gain great faith in Him so we can see his glory.

I think the thing that strikes me most here is how close He was to Lazarus’ family. They were like His family.  He loved them deeply, and spent time with them in their home.  All this time as I’ve prayed for miracles, I expected the “straightway” ones where He went immediately.  That has not happened.  And it has been so hard sometimes, but it has taught me my own strength, and is shaping me into a better person, with a greater capacity to love, be patient, and trust in God.  He knows the needs each of us have and responds accordingly.