Showing posts with label You are not alone. Show all posts
Showing posts with label You are not alone. Show all posts

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

Sunday, June 15, 2014

Honoring Fathers: FPIES, from Dad's Perspectives

This post is to honor fathers of children living with FPIES by sharing these stories of the journey of their families.  Sharing both trials and successes gives a voice to all those struggling with this invisible diagnosis, and is a valuable tool for other families as well.  We welcome this unique opportunity for families to learn from one another and continue to grow together as a supportive community.


I'm a DIY dad... why can't I fix this?
By Kevin Ronningen

As a father of a child with FPIES I have this constant urge to just "fix" this.  I want to protect my son. I want to make the pain go away. And I don't want to face the fact that this is a chronic illness or how it might be affecting the development of our son.  Let alone look at the stress it puts on my wife and I, our marriage and our family.

After two and half years of living with FPIES, I've faced the reality that I can't fix this and I can't make the pain go away.  That doesn't mean I stop fighting for my son's health and well being.

I try my best to keep up with all the things doctors are saying, what foods we should be trying next and what the last dirty diaper looked like.  It's overwhelming... all the time.  But I've learned that overwhelming is not unmanageable.

My wife and I make a great team... we knew that when we got married nine years ago.  That is even clearer now that we have a son with FPIES.  She worries a lot about "the next food" and spends a lot of time in the kitchen trying new recipes.  In order for her to do that, I've had to step up and keep other parts of daily life moving forward.  It's never easy with both of us working full-time, but together we make it happen.

Bottom line, even the most determined DIY dad's can't "fix" FPIES.  But with a little effort, we can at least help.  None of us are alone in this.



Kevin Ronningen is a Marketing Manager at North Shore Medical Center in Salem, Massachusetts. He's married and a father to two little boys, ages 5 and 2. His youngest showed FPIES symptoms from birth.


Under it all, Superdad is freaking out!
By Mike Hansen 

“I guess what scares me the most now is the thought that I won’t be able to protect you” ― Julia Hoban, Willow

When you and your partner hold your little baby in your arms for the first time, there are not many more magical moments in life. Their strange lips open as they stretch their weak, bird-like necks and tilt their heads to the side, giving you a quick glimpse of their ambiguously colored eyes. You don’t understand it, but you are immediately in love. From that moment, you would put your life in immediate danger, to protect the tiny, strange life you hold in your arms. I had the fortune of experiencing that twice.
The first time was in 2008, with my daughter, Kennedy. It was a long, drawn out labor that ended in a cesarean-section, but I was in love. From that Monday night, that first night I became a dad, it all changed. If I needed to step in front of a bus or jump into a crocodile invested river or fight off a bear (even Urlacher) I would do it to make sure that Kennedy was safe. Nothing is going to hurt my little girl. And, if anything or anybody tries, may God have mercy on their soul. I’m her dad. Like most dads think they are, I’m superdad for cry eye!
In 2010, Laura and I had the great fortune to hold our second tiny, strange life in our arms. We welcomed Miles on a Friday. He came into this world a lot faster than Kennedy, mostly due to the planned cesarean-section. On Sunday, I held him in my arms, he did his weird bird stretch, and we watched our first Bears game together. It was the famed “Process of the Catch” game.  Again, love at first sight. Now I had Laura, Kennedy and Miles to protect. What was once just Laura and I in a small one-bedroom apartment, was now an entire family in a two-story house with a basement. Superdad has himself a superfamily now!
Miles’s First Bears Game
Life was going awesome. I had a good job, nice house, beautiful wife, and two, great kids. And then Miles began having his FPIES episodes.  I recently wrote, "The Worst Part about FPIES is not KnowingYour Child has FPIES" for Food Allergy Awareness Week 2014.  In that, I wrote about the general aspects of FPIES and how we have come to manage as a family. This is more about how it is to be superdad during an episode. Particularly during the first few, which were more violent. Truth is, it’s not easy. There are so many things going on that I try to be cognizant about but it doesn’t stop the fact that Miles is going through an episode in which he is vomiting continuously and becoming lethargic in the process.
When he would begin an episode, the first thing I would always do would be to focus on Laura. Miles is Laura’s little baby boy. She has that connection that dad’s will never have. Mother’s have the womb connection. It’s perhaps why there are maternal instincts and why men are bigger risk takers. We didn’t sacrifice our bodies and grow a human in seminal stew for nine months. Naturally she would get upset as she watched her child in danger. I would try everything in my power to make sure she was comfortable. Taking the figurative bullet for her. She’s a strong woman, though and is hard to break. It is one of the things that I love about her, but in moments of stress, it’s hard for superdad to be super when supermom throws krypotonite right away!
After a bit I can calm Laura down, and after a little time we can talk it through. There’s a moment of acceptance. It stinks, but once it happens, it happens, you know. Once that happens, I try to focus on comforting Miles. He’s a funny dude, though. He’s typically in a good mood throughout it. He tries to smile in between purges. At that point I don’t know if he is trying to make me feel better. I swear kids are smarter than they act from time to time. Once we have a game plan in action, which is usually the ER for fluids, we focus on Kennedy. It can be traumatic to a five-year old to see her brother recreating scenes from The Exorcist. It’s a time for education and to let her know that he will be okay. He is just a little sick and it’s part of his FPIES. In a few hours he’ll be fine. He got milked, that is all. That’s what we call it here. He can’t have milk. It is not his safe food.
While I am doing all of this, under it all, superdad is freaking out! It does scare me to think that I won’t be able to protect him. I’m also a little pissed. Why is this happening to my son? He’s so small! His body can’t handle this. There’s got to be something I can do to fix this. I am superdad. Superdad fixes things. That’s what dads do. We fix things. So why can’t I fix this?
Over time it’s become a bit easier, but when an episode happens, the process remains the same. Maybe I’m not as scared as the first time. For anyone that has had to see their child receive a lumbar puncture would know what I am talking about. I don’t understand FPIES, but I will do anything to protect Miles and my family.
Mike met his wife, Laura, in 2003 at Purdue University and they were married the following year. In 2008 they welcomed their first born, Kennedy. In 2010 they were blessed again and welcomed Miles. In 2011 Miles and Laura began their education with FPIES and have been doing all they can to spread the word following Miles’ diagnosis. Mike grew up in the suburbs of Chicago, and has been a die-hard Cubs and Bears fan his whole life!  Mike is a writer who maintains a blog at http://www.fattyhansen.com/  and recently finished his first book, When Life Hands you a Lemon and is working on his second book, Mourning Skye.


 The FPIES Foundation does not provide medical advice, diagnosis or treatment. The information provided on this site is intended for supportive, awareness and educational purposes and not as medical advice. It is not a substitute for care by a trained medical provider. For individualized medical advice, please consult a physician. The FPIES Foundation provides suggested links to other Web sites as a convenience to you. The Foundation encourages you to evaluate websites yourself and discuss the information you find with your health care provider(s).  Use of our Website(s) constitutes acknowledgment and understanding by the user that within our Website there may be links to other Websites that are operated by parties or individuals that are not affiliated with The FPIES Foundation. Read more:  link policy.

Sunday, November 11, 2012

"Alone we can do so little; together we can do so much." ~ Helen Keller


At The FPIES Foundation, we believe that forming strong bonds with our local and global communities means greater strength for supporting our children and families. We believe that it is only by partnering with our community that we can effect change. Together, we can make a difference in the lives of FPIES children and their families.

But how can you make a difference? How can you help us to build this foundation of resources and support?

The FPIES Foundation recognizes donations of time and talents!  The talents of one mother whose daughter has FPIES enabled us to release a video on YouTube for Food Allergy Awareness week 2012-- thank you, KatieLou Photography!  Beautiful photographs designed specifically for our new website by Photographyby Sarah M, capturing the essence of the lives of those living with FPIES, were also contributed by a mother whose daughter has FPIES.

The FPIES Foundation blog and website aim to continue to put a voice to this rare allergy. By writing and sharing your story for the Inspiring Family Stories page on the website, you can help contribute to that voice. Putting a story behind your experiences helps others to not feel so alone and can inspire others to reach out as well!


If you are a crafter, our Hugs for Heroes program continues to accept donations of your talents. Your creations can give comfort to a child with FPIES!

Let's continue to build this foundation of caring together! The FPIES Foundation is an entirely volunteer-based organization and does not keep any paid employees– all manpower is unpaid. Any efforts to support the activities of The FPIES Foundation are enormously appreciated, as we strongly value anyone reaching out to FPIES families. 


The journey with this diagnosis can be daunting but the connection to one another can certainly help the load that we all carry to feel a bit lighter. When you are ready and able to reach out, we have opportunities available to suit various interests and availability. Contact us at contact@thefpiesfoundation.com for more information-- we can't wait to hear from you!


This post was written by the Executive Board of The FPIES Foundation 


Friday, May 18, 2012

Celebrating Food Allergy Awareness Week 2012





The FPIES Foundation presents an awareness slideshow for FPIES (Food Protein Induced Enterocolitis Syndrome) for Food Allergy Awareness Week (FAAW) 2012. The video stars some adorable children who just happen to have FPIES. For more information on FPIES visit: www.thefpiesfoundation.org 

Video created by: Katie Lou
 http://katielousphotography.com/blog/ 

Music by: Kevin McLeod. Eternal Hope
 http://incompetech.com/m/c/royalty-free/index.html?keywords=eternal+hope

This post was written by the Executive Board of The FPIES Foundation