Showing posts with label Support. Show all posts
Showing posts with label Support. Show all posts

Thursday, February 1, 2018

Our Blog Has Moved!


Our blog has a new address!  
We operate this blog to provide a network of caring -- the support you need to support those living with FPIES. 

We recently have been updating our website and with that, we have a new blog address.  Our new blog (including all posts here) is now located within our website for your convenience. 



As of Jan.1, 2018, all new posts will appear on the new blog:  
http://fpiesfoundation.org/blog/ 




Sunday, November 19, 2017

Global FPIES Day 2017: Steps4FPIES

We thank you for making every step count by joining with us in our ongoing efforts to build awareness, increase support and advance research for individuals affected by Food Protein-Induced Enterocolitis Syndrome (FPIES) for our 4th annual Global FPIES Day

This Global FPIES Day, we witnessed so many #Steps4FPIES! Whether it was through sharing your story with us and in your communities or changing your profile picture to build awareness, you helped to reach out and “start the conversation.” In writing blogs, contacting local media, hosting events or distributing FPIES informational resources to increase education, all of your efforts were an inspiration! Every voice matters, every experience shared today makes a difference for tomorrow.  

If you have not already done so, be sure to watch and share FPIES Myths, the newest FPIES awareness video given to this community by FPIES moms and volunteers Heather Martin, Jackie Morrow.  We thank Heather and Jackie and all those involved for their time and talents contributed to the making of this video.  

We were thrilled to hear a research update from Dr. Jeanelle Boyer, FPIES mom and researcher at Keene State College who is actively doing research on FPIES and the microbiomeBe sure to tune in to our youtube channel and get the updates on her research!


And, of course we are grateful to those listed below and to all who partnered with us to further the reach of awareness.

The need for awareness among providers and in our communities, alongside advancements in researching mechanisms, remains essential to continually building an increased understanding of this diagnosis and support for those affected by it. We remain committed to this work and we thank you for your support!

This post written by Joy Meyer, Co-Director/Co-Founder of The FPIES Foundation. 

Sunday, October 1, 2017

Embracing the Gadgets


Before I had my two children, I was never much of a kitchen gadgets or appliances person. Most of what I needed to do in the kitchen, I could do by hand, and I didn’t want to pay for them, didn’t want to clean them, and I didn’t want to try to find space to store them in our usually small kitchens.

And then FPIES.

My oldest had a long list of fails as a toddler, but wheat was one of our safes, and there were a very, very few types of packaged breads he could eat. But between on-and-off availability and shifting ingredient lists, I would spend what felt like hours in the bread aisle muttering ingredients aloud to myself, trying desperately to find a loaf that was dairy-, egg-, soy-, and corn-free.

The most frustrating thing about this experience (apart from doing it several months pregnant and with a toddler), was that it shouldn’t have been that hard. Bread doesn’t need all those extra things in it. When my local grocery stores stopped reliably carrying anything we could eat, I started researching bread machines. My mom, always finding ways to help in our FPIES journey even while living in another country, offered to buy us one. Thanks to the wonders of the internet and free two-day shipping, it arrived that week, and I immediately put it to the test.

It sounds silly to say that a bread machine changed my life.

But I use it 2-3 times a week, and have for over three years now. I make all our own bread. No more wasting ten minutes in the bread aisle. No more dealing with the ever-mounting frustration as you realize that this loaf has whey, and that one has corn flour, and this one has soy in one of its myriad forms. Instead, five minutes of measuring, one push of a button and in less than four hours, there’s a fresh loaf of bread ready to eat. I’ve also used it to make pizza, soft pretzels, cinnamon rolls, hamburger and hot dog buns, dinner rolls, and naan. It’s gotten me through two FPIES kids, my youngest with only a dozen safe foods at the moment, and my own diet, which is dairy-, egg-, and corn-free.

Could I have made all of those things without my bread machine? Maybe. Theoretically. But the stress, hassle, time, and mental energy it has saved me has been huge. And, realistically, I don’t know that I would have been brave enough to try. There’s just something so intimidating about yeast.

Even with as much as I love my bread machine, it still took me a while to embrace other kitchen gadgets, probably because my oldest started to outgrow his FPIES, thus opening up so many more commercially made foods, and I had hopes that my youngest would as well. But as my youngest is now approaching three, and showing no signs of outgrowing FPIES any time soon, I’ve started to cave. He deserves fun foods too, and if I don’t make it myself, he usually can’t have it.

A candy thermometer allowed me to make lollipops, and, more recently, marshmallows. An ice cream maker purchase after our recent move to Texas gives him a treat to help beat the heat. The waffle maker has been fun for our whole family – including any overnight guests we have.

As FPIES parents, we need all the help we can get in the kitchen. I’m not saying you should go on a spending spree and rack up credit card debt stuffing your kitchen cupboards. But if there’s a gadget that could make your life easier, and you can afford it, go for it! Maybe there’s something like a waffle maker, that would let you try a new texture or presentation for your kids, or a gadget that will do what you’re already doing by hand, but in less time and with less effort. I know some families have found a Vitamix to be a huge help in making their own milks, or have gotten a lot of use out of a stand mixer.

It doesn’t even have to be something that would cost hundreds of dollars to be a big help. For some reason, I have always been completely incompetent when it comes to making cut out cookies, and I finally just gave up altogether. Less than $10 for a set of plunger cookie cutters, and a little experiment with a recipe, and now my kids get to enjoy their own animal crackers.  You can find that recipe here

This new perspective has helped my focus change from what we can’t eat or make, to thinking of ways that I can work around certain problems. Instead of “Oh, he’ll never be able to enjoy that,” I think “What would it take to make that? Is it worth it? Are there any alternatives? What else could I make that would be similar but still fun?”

 FPIES is a battle, no doubt about it, and a well-equipped kitchen can be a strong ally.

Now if you’ll excuse me, I think I have some more gadget research to do…

What gadget would you splurge on that would make your life as an FPIES parent easier in the kitchen?





This guest blog post written by Janie Dullard. Janie lives in Pearland, Texas with her husband and two children, both diagnosed with FPIES as infants, though her oldest has now outgrown it. She works as a freelance editor and has written a children's book, available here: https://www.amazon.com/Elephants-Tour-Yellow-Umbrella-Company/dp/0990799522/ . Her days are spent chasing after her two preschool-aged children, working, and concocting strange FPIES-friendly foods that her children will sometimes even eat.



Wednesday, August 30, 2017

Raising FPIES awareness on The Mighty

A diagnosis of FPIES can be life-altering.  So, when The Mighty asked our community for some of the things parents of children living with FPIES are doing, because of the diagnosis, that other people may not realize, the response was incredible.  


With over 150 million readers and thousands of contributors, The Mighty has been building a community of online rare disease support.  They “publish real stories by real people facing real challenges”.   They have created a safe platform for rare disease community members and organizations to connect with others, share their stories while raising awareness and support for rare diseases as a whole.  Together we are strong. 



The Mighty has given us the opportunity to share your experiences in stories such as:




We are proud to be among the over 200 rare disease non-profit organizations that support and partner with The Mighty. We will continue to bring additional awareness stories in the future. 

If you would like to contribute a story, please visit https://themighty.com/submit-a-story/

Wednesday, August 16, 2017

Power of the PIN

In 2013 we, at The FPIES Foundation, presented the first-of-its-kind FPIES Global Patient Registry through the Patient Crossroads CONNECT program a patient registry platform companyLast year, Patient Crossroads underwent a rebranding to become AltaVoice.  Through Altavoice we were introduced to the Power of the Patients Insights Network (PIN) which enables us to further amplify the voice of children and families living with FPIES to help researchers and potential drug developers find better treatments, faster.


What is AltaVoice?
AltaVoice, formally Patient Crossroads, is a patient-centered data company that optimizes the search for better treatments for diseases.  They build and host Patient Insights Networks (PINs). PINs are ideal for collecting, curating and sharing patient and clinician reported health data. Altavoice works with drug developers, advocacy organizations, like The FPIES Foundation, and academic researchers, uniting them with patients to help improve lives.

What is a PIN?
A PIN stands for Patients Insights Network.  An AltaVoice PIN is more powerful than a traditional registry. It is an interactive, online platform for surveying patients, uploading medical records, tracking health outcomes and sharing de-identified disease data. Additionally, unlike typical clinician-driven registries, PINs are patient powered. The AltaVoice PINs make it easy for families to share their child’s experience, contribute medical data and maintain their privacy while being connected to the latest research, treatment and disease education opportunities.

Sharing Data & Improving Care
The AltaVoice PIN model was built with patients at the center, in control of their data. They believe strongly that advances are made faster when data collection is standardized and advocacy groups, such as ours, include the data in a global network, among other rare diseases that may share commonalities.
We share AltaVoices goals to encourage the sharing of de-identified data and studying findings to help patients learn how others manage similar health challenges. Sharing data also helps quantify the patient journey and build a stronger case for improving care.

Your Privacy
AltaVoice remains passionate about using their expertise to save time, lower costs and improve patients’ lives in a protected environment. Protecting patient data while providing broad access to health information is the cornerstone of their system design. AltaVoice rigorously manages and operates all systems to comply with HIPAA, FISMA and data and patient protection laws.

Inherited & Rare Diseases
AltaVoice has also partnered with Invitae to create new offerings to advance research and access to care for patient with inherited and rare diseases.  While FPIES is not known to be a genetic condition, this merger enables our registry to be open to collecting the data needed for investigating FPIES as a genetic condition.  We are excited for these possibilities under our free FPIES Patient Registry. 

The AltaVoice PIN provide patients, The FPIES Foundation, and research groups with a platform where they direct how, when, and with whom to share their clinical, and in the future, genetic, information to benefit their children and families and further research efforts for FPIES.


Register on the FPIES Registry here: www.fpiesregistry.com






Monday, November 21, 2016

An Interview with the Awareness Critters Creator!

I was working on my master’s degree in health communication when I met my husband. Fast forward a year and a half later, I was sitting in the NICU with our newborn daughter feeling like I should have paid more attention to the practical aspects of the degree I had been working on. I thought when we left after that hellish week, that would be the worst health thing our daughter would ever go through.

I was wrong.

Fast forward again to when our daughter was 15-months-old, I sat in the parking lot of an allergist office crying with relief and joy. We finally had a name to what had been going on with my daughter – FPIES. I found The FPIES Foundation and through them various online support groups. I found a virtual village of other parents that were leading equally ridiculous lives and that “got it.

One of the ways I deal with stress is through art, painting, sewing, drawing, knitting, and so much more; really, I have tried my hand at anything artistic over the years, even glass blowing!

One night I was laying in bed—exhausted -- it had been a long day with a toddler and 4-month-old both reacting to something. As a mom of two children with FPIES and other various medical complexities, I am used to being exhausted, but somehow that day was especially draining.

By some miracle they had both fallen asleep relatively early. By all that was good and holy, I was going to take advantage of that and get some sleep! I lay down, but my brain wouldn’t stop working. I kept thinking about how my children had such different lives, how my family had such a different life, than almost all of my friends. I thought of all the medical debt we were not so slowly accruing, and how terrified and helpless it made me feel to be treading water emotionally and financially so much of the time, on top of the already helpless feeling that comes from seeing your child(ren) sick so much of the time. I sent out a desperate prayer (one that I had said many times before), of, “Please help me figure this out! Please help me figure out how to take care of my family!

All of a sudden, a fully formed idea flashed in my mind of a line of illustrations featuring animals or critters with different special and rare needs. Lists and images started zipping through my brain and instead of falling asleep I was rolling over and reaching for a pad of paper.

Several hours later, I had a paper filled with ideas for different animals that I had dubbed, Awareness Critters. I also had sketched out and then painted an illustration with a mother mouse and her child carrying teal pumpkins.  With Halloween coming up and Global FPIES Day right around the corner, with allergic reactions of my children fresh in my mind, I felt inspired.

I went to bed feeling happy. It had been a long time since I had been creative and suddenly I felt like I had found a calling – even if I was the only one who ever saw the paintings.

Hesitantly, I posted my painting to my own Facebook page and then to a couple of Facebook FPIES support groups. I shared the start of my idea and waited to see how people responded. I felt like I had just jumped naked in front of a giant crowd, and honestly wondered if my art was good enough, and if anyone would like the idea . Self doubt can be exhausting!. 

I was overwhelmed by the positive response and then by requests for illustrations to feature specific issues - diabetes, vision issues, Gtubes, NG tubes, leg braces, epilepsy, and so many more. Obviously, I had hit upon an idea and a need that wasn’t being met.


I believe that everyone, especially the youngest and most vulnerable in our society, should be seen, heard, and loved for who they are and not who the media or society says they “should be”. We are all deserving of love and compassion. We all have the same basic wants, needs and even dreams.

My hope for these Awareness Critters is that they bring awareness to families and individuals struggling with Rare and hard issues.

I have big dreams for these Critters, bigger than I even want to admit out loud yet. I dream of being able to do something that I love, that can support my family and bring about positive change in the world. I dream about being able to bring awareness to the amazing children and families that face the challenging situations that special and rare needs bring daily. I know the exhaustion, terror, isolation, and joy that come with raising these amazing children. I dream that Rare won’t mean “unheard of” anymore! 

This post was written by Brittany Huston.  Brittany is the mama of four beautiful children, the two youngest have multiple complex medical conditions, including FPIES. Her family lives on a small five acre farm in the high desert of New Mexico. Brittany's days often consist of running around after small children, working on craft projects, and chasing free-range turkeys out of the family's garden. She uses her family's daily life, the joys and the struggles, and the nature that surrounds her to help inspire her art and writing. 




Tuesday, November 15, 2016

Global FPIES Day 2016 Impact: How we made a difference

It’s been a month since we celebrated Global FPIES Day and we’d like to take a look back at all we shared and accomplished together.

Tools that Build Bridges

This year’s theme was “Tools that Build Bridges” and we were able to provide some amazing new tools to help families and spread awareness. They can be found on the Global FPIES Day webpage.
  1. We released 9 video presentations for FPIES families. The entire playlist can be seen here.
  2. We debuted our new Online Learning Library, where you can find multimedia resources for education and awareness.
  3. We offered multilingual resources to reach out to a wider audience and help as many families struggling with FPIES as possible.
  4. We focused on nutrition with the release of our nutrition worksheets, which can be found on the Global FPIES Day page and the Online Learning Library. We also talked about the Nutrition Webinar, which was held on October 25th.
  5. We partnered with The Mighty, an online community for people struggling with serious challenges, such as health or mental illnesses. Check out this blog post contributed by The Mighty for more information. We also used Facebook to ask you “What’s one secret you wish others knew about caring for someone with FPIES?” The Mighty used your answers to put together a wonderful blog post, 19 Secrets Families With FPIES Wish Others Knew.
  6. We hosted an FPIES Twitter chat with Foundation volunteer Victoria Warren and MAB member Dr. Sakina Bajowala about the ins and outs of emergency care. We’ll be posting a summary here on the blog, so watch for that soon!

Families

And of course, many FPIES families found their own ways to build bridges and spread awareness. As in previous years, some created and shared a “I am the voice” picture frame. You can view the online album here.

Others took some time on Global Day to post about FPIES on Facebook, to change their profile picture to the FPIES day button or picture frame, and some even held their own events. Mom and LuLaRoe Consultant put together a family fundraiser, while the Litteral family handed out flyers featuring their “I am the voice” picture frame.

We want to thank them and all the families who reached out to others and found ways to talk about FPIES on Global Day!

Partners

We also want to give a shout-out to our partner organizations who helped spread the word by sharing information about FPIES and Global FPIES Day on their social media accounts and websites. Sarah’s FPIESClubhouse put on a great awareness campaign, including some Webkinz giveaways.

Several of our partners, including CMNuA, No Biggie Bunch, and Global Genes, tweeted or retweeted about Global Day. You can see those by searching for GlobalFPIESDay on Twitter. Others posted or shared our posts on Facebook, including AllergyFree, Feeding Tube Awareness, and My Munch Bug. You can see those by searching for Global FPIES Day on Facebook.

There were many, many other partners who got involved on Global Day and we are so grateful for all the support!

Presenters

Finally, we want to say thank you to the amazing presenters who created the online videos. Your contributions were a large part of this year’s Global FPIES Day and it wouldn’t have been the same without you!

To all who participated in Global FPIES Day 2016, you made a difference! We know that as we take these tools and move forward, we will continue to build bridges and find ways to help children and families struggling with FPIES.

We’d love to hear how you spent Global Day this year, so please comment below and let us know!

This post was written by FPIES Foundation volunteer Aubrey Fredrickson.  Aubrey is a freelance writer and mother of two. Although not personally touched by FPIES, she is grateful for the opportunity to be involved with the families and volunteers of the FPIES Foundation.

Saturday, November 12, 2016

We're Partnering With The Mighty!



We're thrilled to announce a new partnership that will bring our resources in front of The Mighty's wide-reaching readership. We will now have a growing home page on The Mighty and appear on many stories on the site.

The Mighty is a story-based health community focused on improving the lives of people facing disease, disorder, mental illness and disability. More than half of Americans are facing serious health conditions or medical issues. They want more than information. They want to be inspired. The Mighty publishes real stories about real people facing real challenges.

Here's an example of the kind of stories on The Mighty: "A Letter to Parents of Children With Special Needs, From a Pediatric Nurse"

We're dedicated to helping people with FPIES in their lives. With this partnership, we'll be able to help even more people.



We encourage you to submit a story to The Mighty and make your voice heard.

Content for this post was contributed by The Mighty. 

Sunday, August 28, 2016

The House That Awareness Built

It was a beautiful afternoon and my girls were so excited-- the long-awaited baking had begun!  Since they both have separate safe food lists and separate baking equipment, each girl got her own turn in the kitchen with mama.  My eldest tied on her apron, read the recipe, and started measuring. When I reached over to help, she turned to me and smiled sweetly, saying,“I can do it myself this time, mama. I'll be OK.”

As parents, we often find ourselves moving towards milestones--- waiting for that first smile, that first sweet sound of our babies' voices, that first wobbly step. The first tiny move towards independence! As parents of children diagnosed with FPIES, milestones often take on a different meaning. We learn to celebrate the “ordinary moments” as extraordinary milestones-- a first food after months of reactions, a new texture that is finally tolerated, that first shared family meal.

Five incredible years have passed since The FPIES Foundation incorporated. Five years of meeting new families, hearing of heartaches and victories, struggles and successes. Five years of meeting and partnering with compassionate and caring medical professionals, expanding medical education resources, and lighting the flame of awareness in places where FPIES was once unheard of. This has been a monumental five years, and what has made it so monumental has been sharing in this journey and these milestones together.


You were with us when we took our first step on August 31, 2011, launching The FPIES Foundation and debuting our website. You were with us, empowering other families day after day, year after year, to find their voices through our toolbox and resources. You were with us, advocating for other families as you shared your own families' inspiring stories. And you are with us today, ensuring The FPIES Foundation continues to be a home for resources, support, and advocacy. This is the house that awareness built, with an incredibly strong community at the core of its Foundation.


From our beginnings, we have dedicated ourselves to overcoming the challenges of FPIES by offering tools for education, support and advocacy to empower families and the medical community. In the ordinary, daily life with FPIES, we have found extraordinary connections. We look to the future as we continue to invest in education, awareness, research and support for all affected individuals, their families and the medical professionals that serve them. Together, we will continue to be the Voice for all those affected by FPIES worldwide; together, we will continue to take big steps for the smallest of patients. Thank you for helping us build the Foundation together--- yesterday, today and tomorrow!






Monday, July 11, 2016

When Life Hits the Fan

When Life Hits the Fan
A guest post by Honor Genetski

I've been getting my share of lessons in acceptance lately. I choose to see it this way rather than as a run of bad luck because without fail I am more grateful, more clear-seeing, and more resourced on the other side of these stretches. When it's happening I obviously just want it all to go away. 

It started a few months ago when Lemon caught a stomach bug. It hit her hard, but I thought after a few days of gut rest she'd be back to her normal cheery self. Instead her entire system unraveled and she lost the ability to digest anything. She survived on broth for another month while we waited for this monster to run its course. It was a lot of waiting in the dark.

When Lemon gets sick no one knows what's happening. This time after lab work ruled out a few common bacteria and parasites, I was told by her pediatrician that she would defer to me since I was the expert on my daughter's health. I sat with these words for a minute unsure if that was actually a good thing in this case. 

There really isn't a net to catch this child when she falls. I hold her on the way down and we fall together. 

It has me thinking about how we all find ourselves in the depths at one time or another and have to find a way through. Holding healing for yourself or for someone you love is a commitment to staying present with fear, exhaustion, and every joyous gain. It's allowing yourself to be right where you are with the tools you've got.

And rock-bottom serves its purpose in that it's a place to take inventory on what is and isn't working, and to resource for the next steps.

The following ideas are some of my most tried and true methods for navigating the deep and making my way back home again. Hopefully they will help you too the next time life hits the fan in your house.

~ Feel your feet connecting with the earth. This is the most immediate kind of grounding work and can be done anywhere, anytime. There is only so much freaking out you can do while your focus is on your feet.

~ Practice gratitude about anything and everything. Say it out loud. This is life-changing work because it makes acceptance of what is feel bigger.

~ Ask for what you need (or want) from your partner, spouse, friend, and extended family. Don't expect them to know until you verbalize it.

~ Explore more forms of support than you think you need (support groups, therapy, friend time, exercise). 

~ Connect with resources that align with your values – make sure it’s a right fit. If it isn't, allow yourself to explore other options. 

~ Create a space to be with yourself. Choose a place where you feel connected with something bigger than you. Church, yoga, a meditation circle, standing in the forest, or immersing in water. 

~ Some days collapse is a necessary and logical response to what life brings. Go there and find the gem of stillness buried inside. When you feel ready get up and start again.



Honor is a Marriage and Family Therapist, and mom to a child with FPIES.  Honor follows her intuition and hope in the quest for healing on Therapist Mama. where this blog post originally appeared.  It is shared here with permission.  

Tuesday, June 28, 2016

Resources For Kids: Things to do in the Hospital

Things to do in the Hospital
By Zack Skrip 



At the FPIES foundation, we know that hospital visits can be an unfortunate part of our lives. Many of us have hospital bags packed so that we can trundle our little ones off to the hospital as quickly as possible at any time of the day.

When we are fortunate, it’s a quick visit and we are released the same day. But some visits require more time. In fact, sometimes you’ll be in the hospital, and your child will be well enough to want to do things but due to IVs or maybe hospital policy, you’ll be unable to give them the freedom they’d have at home.

My family spent about 5mos in the hospital last year. When it comes to hospital living, sadly, we know what we are talking about. Also, our hospitalizations were spent across the country from where we live, so we didn’t have the freedom to run home and change out books or toys.

These are the tricks we learned last year.

TV
This is where you’ll start. If your child is quite ill, then this is where you’ll stay, too. Kids are naturally attracted to TV and in your frazzled state you’ll appreciate the distraction also.

Try not to let this get out of hand though. As the hours turn into days, TV has a way of making you (and your child) anxious or “antzy.”

Consider making TV a prize that you get to watch, maybe at a certain time of day (“It has to be after 3pm…”), after they finish their food trial, or maybe after a certain amount of time spent doing a different activity.

I’m going to be honest with you. You are going to watch a lot of television. I know you don’t let your kids watch that much at home. You aren’t a bad parent. Hospitals suck. This is what it is.

Reading
Reading can be tough when you just get to the hospital, especially depending on how sick everyone is, but over time, it’ll provide a very pleasant distraction from the environment and a reason to stop watching TV.

The tough thing about books can be having them with you. Books take up a lot of space, and kid’s books are by nature short--so you need a lot of them. “Kindle!” you all say. Well, yes. There are Kindle versions of kids books, but unless you are really committed to the platform, I’m assuming most of your kids book will be the old fashioned paper kind.

So, unless you want to keep a stack separate, ready to grab on your way out the door, it’s more than likely that you won’t bring very many books with you (if any).

Here’s what you can do:

Buy a few children’s book compendiums. These large, convenient volumes have many children’s books published together. This way you can grab one or two and be set for a short stay. The only downfall, is that they are heavy, and therefore hard to read lying down. Here are our favorites:


You can buy most of these used, and that could save you a little bit of money. Hospital stays aside, these volumes contain many of the best stories, so they’re good to have anyway.

         YouTube
You would think this would be in the same category as TV, but I’ve learned how to convince myself that it isn’t, if only because of the educational value we’ve gotten from it.

As you read through stories or go about your day, think of things that your child might not have ever been exposed to, and then use YouTube to show them what it’s like.

For instance, we were working on a sticker sheet that had dinosaurs and volcano's. I realized my son had never seen real lava before so we spent ten minutes looking at lava flows on YouTube. Many of the YouTubers helpfully put things like pop-cans and iPhones in the way of the lava so we could see them explode into flames.

You have to take your education where you can get it.

Aside from nature, there are all sorts of other fun things to use YouTube for. For instance, my son learned all of the instruments in the orchestra over one hospital stay. We’d search for classical music concerts and then name the instruments. (If you’d like to introduce your child to classical music, I’d suggest you start here. These guys are hilarious.)

Crafts
Crafts can provide a fun way to spend some time. They allow your child to use their fine motor skills, get creative, and still stay in bed (if that’s required).

Coloring is the easiest thing to do, and most nursing stations have crayons and coloring sheets available, just ask for them.

My son and I had fun making different paper airplanes (again, ask for some blank copy paper from the nursing station). We’d watch the instructions (thank you, YouTube) and then try it out on our own. You can see which plane goes the fastest, farthest, loops the best, etc.

Another option is to make finger puppets and then play out your child’s favorite fairy tales or stories. Don’t overthink this. One time I took a couple of non-latex gloves, cut off the fingertips, drew different smiles on them and then acted out Hansel and Gretel.

Of course, Pinterest would have a large offering of more creative options, but in the moment, the glove people worked out just fine (but make sure they don’t get swallowed).

Fun Toys
Toys from home can bring a lot of comfort to your child, as it will bring some continuity to what can be a very scary experience. Whether it’s a few favorite stuffed animals or games, bring a couple of toys with you.

If your child is older, or going to be in-patient for a longer period of time, consider some sort of building toy, like Duplos or Magna Tiles. We love the latter because they pack flat and can be wiped down with disinfectant when they take a tumble to the floor. These tiles can be a bit expensive, but if you watch for deals, you can get them discounted.

Remember that most hospitals have a play room that you can usually borrow toys from. So don’t feel like you have to pack something from home. The best part is that once your child is tired of that toy, the staff will pick it up and drop off a different one.

Hospital Resources
Ask your nurse or the floor social worker what other resources are available. Depending on the hospital, you may find any number of the below are offered:


  • Music Therapy
  • Therapy Dogs
  • Hospital Library
  • Children’s toy room


Children’s hospitals especially will have other resources to make your stay as positive as it can be.
Conclusion

These were our favorite ways to spend time in the hospital. What have you found to be the most helpful or comforting while spending time in-patient? Let us know in the comments.


This post written by and contributed to The FPIES Foundation by Zack Skrip. Between working for three different major pharmaceutical companies and being a parent of a child with a chronic illness, Zack knows that accurate healthcare information is vital. He’s a freelance medical copy and business writer, and you can email him at zack@zsmarketing.net