Feeding Tube Awareness Week 2015

In a perfect world, I would have had a lovely post queued up every day last week, in honor of Feeding Tube Awareness Week.  Didn't quite happen. 

Each year, the Feeding Tube Awareness Foundation suggests daily talking points and activities throughout Feeding Tube Awareness Week - I'd really like to take the opportunity to share my thoughts this year.  I'll try to be brief, I totally almost promise.

Why is Aidan tube fed?

What a question!  I'm sure I've tackled this one before, but the short answer is that he doesn't have any safe foods to eat, so he needs to drink a special hypoallergenic formula.  The formula doesn't taste good, and Aidan started refusing to drink it when he was about a year old.  We spent most of our waking hours begging, pleading, and trying to force him to drink even the tiniest amount.  I can remember just before he got his first feeding tube, taking stock of his intake and realizing he was getting about 4 ounces of formula in a day.  Four.  Think a child can grow/thrive/develop on 120 calories per day?  I don't.  And he wasn't.

Things got more complicated as he got older and we learned more about his medical issues, but since I totally almost promised to be brief, that's the short version and I'm sticking to it!

What does this week mean to us?

More than anything else, Feeding Tube Awareness Week means Getting the Word Out.  The more we all talk about it, and the more photos we all share, the less noteworthy it becomes.  This is why I love small children - they ask their questions, think for a moment, and then say - Okay!  And it's just accepted.  It's him, it's part of him, and everyone's fine with it.  I'd love to see the rest of our society get there too.

Addressing the Myths

There are so many myths.  I'll pick a few of my favorite.

Feeding Tubes are for the elderly/extremely sick/very fragile.  Feeding tubes are for people who need them - period, end of story.  Some of those people are elderly, or sick, or medically fragile.  Some of them are young and pretty healthy, but need more intake than they can handle orally.  A lot of them are in between - children and adults with medical issues that, for one reason or another, need a feeding tube.  Only slightly different from the rest of us, children and adults with various medical issues that don't happen to need feeding tubes.

He looks way too healthy to have a feeding tube!  I'll take this as a compliment, and pass it along to his medical team.  We're all working really hard for exactly this end result, so thanks for the positive feedback!  Just as I don't stop putting gas in my car when I notice it's running really well, I won't be stopping tube feeds based on your feedback that they seem to be working.  That would be crazy business.

My child is too active to deal with a feeding tube.  He couldn't possibly handle continuous feeds.  I know, this one sounds so true.  Actually *getting* a feeding tube for the first time sounds like the most life-limiting thing ever.  How will anything ever be okay again?  And when you're dealing with the reality that your child will be on continuous feeds (Which are not always 24 hours continuous - for example, we once had an 18 hours on, 6 hours off schedule for Aidan), it feels crushingly like he'll never have the life that a child deserves - but it's just not true.  My own crazy 4 year old is now a 24 hour continuous feeder, and he attends a typical Pre-K and takes Martial Arts three times per week.  He's also done Gymboree Classes, Soccer, and has been safely fitted to wear a rock climbing harness while wearing his feeding pump in a backpack.  Tubies swim, run, and roughouse like any other kid.  And, for what it's worth, an actual 24 hour continuous feed schedule is really uncommon. 

Bring him to my house, I'll make him drink that formula.  Bring your face to my house.  I'll smack it. 

I can't do this.  You totally can.  It's overwhelming, yes.  It's maddening.  It's exhausting.  But so was new parenthood, and you're doing fine there.  You don't need to be a doctor or a nurse to care for your Tubie.  You will know your Tubie better than any doctor ever will.  On your twentieth admission to the same floor, the same doctors will start asking you what you'd like to do next.  You are going to be the world's leading expert on your Tubie, and don't you forget it!  You've got this! 

Educate!

You may have noticed, Education is kind of a personal mission of mine.  I truly believe that if more people actually understood a day in the life of a Tubie, the world might be just a tiny bit better off for it.  At the very least, it would be more mindful and accepting of this particular difference.

My favorite educational tools, since I focus my efforts on my son's Pre-K peers, are the My Tubey books and Tubie Friends/Mini Buddy stuffed animals.  Feeding Tube Awareness provides some awesome printable guides, which I like to have nicely printed and coil bound for new teachers/caregivers, and nothing beats being able to bring an actual spare tube to show people what's what.

When it comes down to it, people are visual.  Being able to see and touch things goes a long way toward demystifying them.

Celebrate Success!

When Aidan was tiny and new, like every new mom, I promised him that I'd give him everything he needed.  Food.  Shelter.  Love.  Fisher Price.  You know, the essentials.  As he grew (or didn't...), I realized that his body was failing him and preventing me from keeping that promise.  I made the only decision I possibly could have - the one that gave him everything.  Without nourishment and hydration, everything else is irrelevant.  This tube gives Aidan the opportunity to go out and conquer the world, or stay in and play with Legos.  Whatever he does, he's bound to succeed because of the choices we made for him three years ago.  And, you know, I think that's something to celebrate.

Feeding Tube Fun

A little feeding tube humor for you.  In our household, talk of feeding tubes is (obviously) just regular everyday fare.  Aidan knows so much medical terminology, I sometimes wonder if he's Pre-Med or Pre-K.  (Paying his tuition isn't really clearing things up any...)  Last week, we had to take our cat to the Vet for a checkup, and the tech needed to ultrasound the cat's tummy.  Aidan angrily confronted the tech, and said "No!  You stop it!  You do not check his belly with x-rays, because he does not have a tubie!"  When I told him that it was okay, the Kitty Doctor was just helping, he looked at me and I swear he rolled his eyes in my general direction and said "No, Mommy.  She's not a Kitty Doctor.  She's a GI because she's fixing up Stormy's tummy." 

Well I laughed.

Tubie Love

I love that Feeding Tube Awareness Week overlaps with Valentine's Day.  It's so meaningful and so important to us, and while it's not always easy, I absolutely love this feeding tube, because it has allowed Aidan to be the normal and healthy little boy that he is.  This is something to celebrate - to shout from the rooftops!

To spread our love this year, Aidan and I made Valentines for his new classmates.  We were happy not to have to redesign them, since he recently moved to a new school with all new friends, so no one had seen this Valentine before.  We added his TinySuperheroes card (because it's super cool and gives a little bit of background on who he is and why we didn't just hand out Ninja Turtles Valentines and call it a day), and we also gave out Feeding Tube Awareness tattoos because 4 year olds think tattoos are super awesome. 

In closing, I'll share the photo collages I made this year.  Because holy smokes, he's cute.

NG Tube - placed April 15, 2012.  Aidan was about 15 months old and had the NG Tube for 6 weeks.

PEG G Tube - Placed May 31, 2012.  Aidan was about 17 months old and had the PEG for about 4 months.

Buttons!  Aidan's first button was a G-Tube, placed on October 5, 2012.  Aidan was 21 months old and kept that tube for 6 months (with changes).  Aidan's next button was actually a GJ Tube, placed on April 2, 2013 when Aidan was 27 months old and I should have stopped counting in months forever ago.  In 2015 at age 4, he still has a GJ button.

Purely for fun.  Way back in the day, when he had a G tube, Aidan tolerated gravity bolus feeds by syringe.  Now, he's all pump, all the time.

Feeding Tube Awareness Foundation - A Parent's Introduction to Tube Feeding

I think everyone knows by now how much I love the Feeding Tube Awareness Foundation.  They were a really helpful source of information for us when Aidan got his tube, and I still go back there when I'm troubleshooting a problem or feeling a little discouraged.

Recently, they released A Parent's Introduction to Tube Feeding - which you can download HERE - or request a hard copy of (free for new Tubie Parents, Hospitals, and Medical Professionals.

The early days with a tubie can be very dark - FTA is a bright shining light.  If you know someone who needs that light, please send them in this direction


http://www.feedingtubeawareness.com/

Feeding Tube Awareness Week 2014 - It's Almost Here!

I am so excited for Feeding Tube Awareness Week!  This year, families are putting extra special focus on all of amazing and positive things about having a feeding tube and being a Tubie.

A feeding tube is a life-saving medical intervention for someone who can't eat, or can't eat enough to grow and thrive.  But it is so, so much more.  Over the past two years, we have learned that a feeding tube is a symbol of membership in a community that gives love and support when the medical community falls short. 

Families are sent home with these medical devices and minimal training, and enough questions to keep an after-hours line tied up for days.  A quick visit to any of a number of Feeding Tube support communities will show that there is always - always - someone ready to step up and help.  Ready to cheer when you finally find your first safe food, or cry with you  when you fail a much-anticipated scope.  Ready to decipher yet another rash with you, or offer opinions on particularly baffling diaper contents.

Over the next week, I'd like to try to help you understand what it's like to have a tube, to live with a Tubie, and why I quite genuinely feel that this is the Best Thing We've Ever Done.

This picture was a promise.  I was promising that I would do anything for him - anything to protect him.   I'm so thankful for the medical technology that's allowed me to keep my promise.

Neo-Gate 2013 - A Week of Elecare

When last you heard, we were going to be giving Elecare Jr. a try.  Here's to a week of Elecare, what it's done for us, and where we are today...


3/1 - Day 0 - We received the OK to discontinue Neocate Jr. and begin Elecare Jr.  For the first night in more nights than my sleep-deprived brain can recall, we all slept.  Nobody threw up!  I was hoping it would help, but I didn't dare hope it would help this quickly!

3/2 - Day 1 - Maybe this isn't a fluke!  He didn't throw up!  This was a really great day, and it gives me a lot of hope that maybe - just maybe! - we have found a solution for Aidan.

3/3 - Day 2 - Still not throwing up!  Unfortunately, Aidan was a very angry baby today.  He woke up with a blistery bottom and was very screamy.  I'm a little nervous, but he's not throwing up, so can I really complain?

3/4 - Day 3 - This was a good day.  His mood was better, so maybe yesterday was some kind of anomaly.  A two year old being two.  Until midnight, that is.  Aidan woke up very suddenly and very angrily, screaming and arching his back.  He can't be refluxing, can he?  We're still on a PPI, even though I can't imagine anyone still thinks he needs it.  I'm starting to be reminded of food trials.  Specifically, the part where we fail them.  But it's so confusing, because most of the day is really good.  We'll keep up the reflux meds and keep going with the Elecare - because there's nothing else to try.

I spoke to Mimi at CHOP today and arranged to pick up more samples of Elecare Jr.  This stuff is seriously precious cargo!  Huge thanks to CHOP and Mimi, for continuing to work with us while we try to figure this out.  At least we aren't alone.

3/5 - Day 4 - Not as great a day, but still not terrible.  He woke up mid-nap screaming and refused to go back to sleep.  But I feel like it (might???) be safe to say that he's not throwing up his feeds anymore, which is a huge relief.  It tells me that it's not Aidan's little body failing him somehow.  It's Neocate.  Neocate failed him.  Which I guess we knew, but now I'm even more confident.  By bedtime, Aidan's cheeks were starting to look rashy and red.  This worries me...



The really nice thing is that now that Aidan's not throwing up constantly, he can eat on the go a bit easier.  Eating while running, jumping, and playing is now on the table.  He's begrudgingly getting used to the backpack - and I think it looks adorable on him!

3/6 - Day 5 - Aidan's got upper respiratory symptoms today.  He's been on his inhaler since yesterday.  He's sneezy and snotty and coughing.  We've had another little guy in daycare with him for the past few days, so maybe that's why, or maybe these are more symptoms that I need to care about while we figure this all out.  (I love playing "sick or just a toddler??")  Anyway, Aidan's face is still red and crusty today, which is a big part of his traditional soy reaction.  We're keeping an eye on it.  He's also dealing with some diarrhea and a sore, red bottom.  He's complaining that his belly hurts, but we did just have a button change last night, so hopefully he's just a little bit sore from that.  Pretty please don't be allergic to Elecare, Aidan.  I don't have the best feeling about this, but we'll keep going.

In super exciting news, Aidan has gained 4 ounces this week!  More than we can say for his progress in the past 3 weeks on Neocate Jr! 

3/7 - Day 6 - Aidan is congested and wheezing a little bit - I guess maybe he did come down with a bit of a cold?  His cheeks are still red and crusty from time to time, and he's still having diarrhea and a diaper rash.  He's feeling very clingy and overly emotional - He woke up several times overnight crying, asking to be held, and holding his tummy.  I really hate to keep doing this, but what other choice is there?

3/8 - Day 7 - Aidan is coughing a lot while he takes his feeds.  His tummy is still bothering him, and his diaper rash is getting worse.  He's very tired and cranky.  :(


So it's been a week now.  Aidan is worlds better off now that he's off the Neocate Jr.  I'm really thankful for that.  But I feel like Elecare isn't exactly the right solution either.  I don't know what else to do, though.  I'm NOT going back to Neocate Jr.  I'm afraid to try Neocate Infant, because I really don't know what the situation is over at Nutricia and honestly, my faith in them is pretty low.  I'm afraid to try flavored Elecare if we're already concerned that he may be reacting to the unflavored.  I'm really hesitant to try a steroid - we've been down that road and it was awful.  So what's left?  He's keeping the formula down and seems to be gaining some weight - so do we just go with this because it's the best we can do?  Can that really be the answer for my baby?  When he wakes up at night, holding his tummy and crying, can I really look into his little face and tell him that this is as good as it gets?

Feeding Tube Awareness Week - Story Time!

Aidan and Megan did something really, really special for Feeding Tube Awareness Week!  They visited a local storytime and spread awareness the good old fashioned way!

Here's Meg, to tell you more...  

Sometimes what can be terrible about caring for a toddler is having to step outside of your comfort zone and realize, “This isn’t about me. This is about <insert child's name here>.” We are responsible for our children’s daily experiences, social interactions, and exposing them to the world – and the world to them. That is what Feeding Tube Awareness Week was all about; Aidan and exposing the world to him, to that which sets him apart from other kids, to his tube. 

Story time at the Perkiomen Valley Public Library quickly became a regular item on our “Things We Like To Do” list. Especially following the really disappointing start we had finding inviting places to go. The week we met Hillary, the volunteer who runs story time, Aidan joined the group to draw, read, do his craft, and eat a snack. Aidan ate the way he does – a little from his cup but mostly from his tube. Mothers and children looked, while trying not to stare, and asked the question, while trying not to offend. (Note: We don’t mind, really. We want you to ask. We want to tell you. We want you to understand this little boy is mostly just like your little boy but a tiny bit different.) After snack an amazing thing happened. Aidan was treated normally. The boys and girls ran and chased and kicked balls with Aidan just like they did with the others - but more importantly, mothers didn’t stop them. (We constantly find parents warning their children away from Aidan. Trust me, we get it, no one wants to be the parent whose kid breaks the “sick” kid, but that is exactly why we want you to ask.) Caroline and I looked at each other and smiled. We liked this place and these people, and we knew we wanted to be a part of it. 

As we were leaving that first day, we took some time to talk more to Hillary, who did ask questions and was a little shocked we were so excited at the normalcy. I mentioned to Hillary that Feeding Tube Awareness Week was coming up and asked if she minded if we could have the floor that day to educate these curious toddlers and parents about our life and Aidan’s feeding tube. She emphatically said yes. 

Feeding Tube Awareness Week was February 10-16 and in it’s 3^rd year. This was our first year to participate.

After saying our hellos and getting out our crayons, Ms. Hillary handed out drawing sheets that said

“G is for GROW. Draw a picture of things that grow”

Lexie drew a picture of flowers while Brody drew a picture of trees.  Aidan drew a picture of... Well, Aidan drew a picture.

Then it was circle time for our story.  Ms. Hillary did an amazing job talking to the kids in a way they could understand what can be a complicated topic - even (especially?) for adults. She talked about how little boys and girls grow big and strong by eating nutrients they can get from eating healthy foods like apples, milk, and eggs…and some of our favorite foods that aren’t so healthy, too (like pizza!!). She asked how those nutrients get into our bodies:

“We eat with our MOUTH!” answered Drew.

“Yes, we eat with our mouths,” replied Ms. Hillary, “but Aidan has a special way to get nutrients into his body. Sometimes, when Aidan eats food it can make him sick so he has a special tube in his belly that helps him get his nutrients so he can grow big and strong, too. Today, I am going to read a story about his special tube.” 

As Ms. Hillary read our story , Aidan and I passed around our Tubie Friend, Puppy Pup, and Medical Me, Baby Aidan, so everyone could see what his tubey looks like. While looking at the tubey in Baby Aidan’s tummy, Drew asked his mom, “How does it get into his mouth?” She answered that it doesn’t and that it goes straight into his belly. “How,” he asked? Then I took out a bolus feeding kit and showed him how we attach it to the tubey and where we put Aidan’s special milk. Then Drew took a turn giving Baby Aidan another bolus feed. (I was grinning ear-to-ear. Aidan was eying Lexie, who liked Puppy-pup a little too much.)

Instead of a craft we played a very special game: Pin the Tubey on the Tubie. Our Tubie, Mr. Penguin, needed help finding the right spot for his tubey so he can get his nutrients, too!!

Charlotte was our big winner!!

After our game it was snack time. Aidan sat and drank Neocate from his cup while the other kids drink their apple juice from theirs. Moms pointed out that Aidan is drinking a special milk and that is why he doesn’t eat goldfish and raisins like them but that’s how he grows. (Under normal circumstances, I would have bolus fed him but we are having difficulties with Aidan tolerating his feeds lately - which is the subject of an entirely different blog post.)

Then the kids, having seen what they needed to see and learned what we wanted them to learn, did what kids do…they ran off to play. Just. Like. Normal. 

The other moms and caregivers that came to story time were really wonderful. They asked questions about Aidan, his disorder, how he was, what we’ve been through, how he was doing,…you know, the usual stuff. Then, happily, the conversation stopped being specific to Aidan and his disorder (we are happy to talk about it but we also want people to see he’s more than his disorder and his tubey, he’s a totally awesome 2-year old boy). We started talking about keeping our children safe, people we know with some food limitations and having a new perspective on that. (I let out a deep sigh of relief.)

Kids are easy, they aren’t prone to getting stuck over things. Kids rarely question why there isn’t cake at the birthday party. It’s the parents we often worry about judging us. What are they thinking? How angry will they be at the inconvenience? Will they be mad if we have a food-free party?

I thanked everyone, numerous times, for letting us come in and take over for the day and share this with them. They responded with, “No, thank you, for coming in and teaching us.”

…then I breathed another sigh of relief.

Team Shields Feeding Tube Awareness Week 2013: WIN!

Special Thanks to Mini Buddy for giving us Puppy Pup!  And to Medical Me for Baby Aidan!  And of course to My Tubey for the wonderful books!

It's Clifford!

Last week, Aidan and Megan went down to the Museum for a very special event.  I'll let her tell you about it :)


Are you familiar with author Norman Bridwell? Yeah, me neither. But I am familiar with Clifford, The Big Red Dog whom Mr. Bridwell is famous for giving the world. (Thank you, sir, sincerely!) In honor of his birthday (Norman Bridwell's, that is), on February 15th the Philadelphia Please Touch Museum was hosting a special day in which you could come, meet Clifford, and get your photo taken with him. In preparation for the day, we learned about the color red (which is also Aidan's favorite sign these days) as well as read a few Clifford books. (I was so excited to meet Clifford that I need a plausible reason for getting my picture taken with him and my two-year old charge was the perfect excuse but I wanted it to be a little special for Aidan, too.)

Meeting Clifford the Big Red Dog went a little like this:

(show up at museum, stand in line for pictures)
Mimi: Aidan, do you want to meet Clifford the Big Red Dog
Aidan: (spinning in circles)
Mimi: Aidan, aren't you so excited to meet Clifford?
Aidan: (giggles and runs under the rope barrier, Ms. Brookie chases and brings back)
Mimi: Aidan, do you see Clifford?
Aidan: (moves head left to right <looking>)
Mimi: Right there, the big red dog? Puppy. The big puppy dog. The big Rose.
Aidan: Rose?!?!?!?! (looks excitedly for Rose)
Mimi: Yes, do you want to meet a big Rose?
Aidan: Yes! Rose!

our turn in line...approaching Clifford

Aidan: Rose! Rose! Rose! (looks up at 6 foot "Rose")
Aidan: No. No Rose.

That kid...he's smart. He knows a Rose when he sees one and he was not happy with this gargantuan impostor.

I still got my picture though.

And since it was still Feeding Tube Awareness Week we did some tube feeding while we were outs and abouts.

I love how many new fun things Aidan gets to see and do with Megan - and I especially love all of the Feeding Tube Awareness she spreads!


Also - for your viewing pleasure - the outtakes...

HOLYCRAPTHAT'SNOTROSE!

Clifford hides from Aidan

Isn't he dainty?

Feeding Tube Awareness Week!!!!!

This video is better than any words I have.  Keep your eyes peeled for my beautiful boy at 1:20...

To all of the brave and beautiful Tubies out there - you are amazing!  You and your families give us strength on days when we have none.  <3

"Just Sugar" Treats!

So, it turns out that there ARE treats out there for EGID kids :)  And actually, these would be a great allergy-safe treat for any kid in your life.  Nothing wrong with plain old sugar (in moderation, of course).

KFA's latest newsletter tipped me off to this ultra-cool Just-Sugar Christmas Tree Sculpture.  All you need is sugar and water!  It's easy to see how this would translate to lollipops for pretty much any occasion, too.

Check out the Kids with Food Allergies website for more awesome recipes and tips for allergy-friendly cooking and baking this holiday season!

Before this all happened - before I brought home my perfectly imperfect little boy, and before I began finding kindred spirits on the Internet - the term "tubie" meant nothing to me.  And chances are, if you don't personally know one, it doesn't mean much to you either.  It's an ongoing mission of mine to change that...

Enter Feeding Tube Awareness.  The site is immeasurably helpful and immensely comforting to boot. It's packed full of information about feeding tubes - different types of tubes, facts about tube feeding, information about making the decision to tube feed, stories of brave tubies, and resources for friends and family members of tubies.  It also offers, via facebook, a way to reach out to others who live this as their "normal."  But none of these are the biggest, most important thing that FTA does. FTA helps raise awareness of feeding tubes and the people who live with them.

I want to do so much for this cause.  We live it every day.  For now, we are doing what we can to spread the word and, hopefully, spread the acceptance.  We love our tubie, and we want everyone to know it.  We have NOTHING to hide and we want the world to know what a Super Tubie looks like. He's brave, he's beautiful, and he's proud to be just the way he is.

If you want to learn more or support the cause by proclaiming that YOU <3 a Tubie, please visit FTA online at: http://www.feedingtubeawareness.org/ or find them on facebook at: http://www.facebook.com/FeedingTubeAwareness

And don't forget to bling out your car with I <3 A Tubie Car Magnets from the FTA store!  They also have shirts, hoodies, onesies, and even temporary tattoos!  I've branded both of our cars, Auntie Megan's car, grandma's car, great-grandma's car, and even great-grandpa's golf cart!

Mommy's Car

Daddy's Car

What is EoE?

It all starts with the eosinophils.  An eosinophil is a type of white blood cell that helps our bodies fight off infections.  Eosinophils are present in our bodies for a number of reasons, including food/environmental allergies, infections, parasites, leukemia, and other medical issues.  One such issue is Eosinophilic Esophagitis.

Why is this thing smiling??

Eosinophilic Esophagitis (EoE) is an allergic inflammatory disease characterized by increased numbers of eosinophils in the esophagus.  In a healthy person, there are no eosinophils present in the esophagus.  But in a patient with EoE, the esophagus can be teeming with them.  These eosinophils can cause irritation and damage, and often quite a bit of pain.

EoE is the most common of the Eosinophilic Gastrointestinal Disorders (EGIDs), but it's not the only one.  When the eosinophils present themselves in the stomach, it is called Eosinophilic Gastritis (EG).  In the stomach and small intestine, it's called Eosinophilic Gastroenteritis (EGE).  In the colon/large intestine, it's Eosinophilic Colitis (EC).

Some recent studies at Cincinnati Children’s Hospital have shown that Eosinophilic Esophagitis is even more common than more well-known GI diseases like Crohn's and Cystic Fibrosis.


The most common symptoms of EoE include:

• Reflux that does not respond to medication
• Difficulty Swallowing
• Food impaction in the esophagus
• Nausea and Vomiting
• Poor Growth or Weight Loss
• Malnutrition
• Abdominal or chest pain
• Poor appetite and refusal to eat
• Difficulty sleeping due to pain or nausea

 The most common symptoms of lower-GI EGIDs (EG, EGE, EC) include:

• Nausea or Vomiting
• Diarrhea
• Poor Growth/Weight Loss
• Abdominal or chest pain
• Reflux that does not respond to medication
• Difficulty swallowing
• Food impactions
• Gastroparesis (Delayed emptying of the stomach)
• Anorexia/Poor Appetite
• Bloating
• Anemia
• Blood in the stool
• Malnutrition
• Difficulty sleeping

It's a lot to deal with - but a diagnosis is the first positive step toward feeling better.

(Big thanks to NJPAEOS for this information!)

Next week - how do you diagnose an EGID - and THEN what?

Fun Finds - Super Tubie!

Bear with me, it's yet another Feeding Tube Find.

There's a really helpful organization called the Feeding Tube Awareness Foundation.  They've provided me a wealth of information about what tubes are, how they work, and how to live with them.  While poking around on their website, I found a place to buy Feeding Tube Awareness apparel.

The selection is basic - t-shirts and onesies for the Super Tubie in your life, and t-shirts, onesies, and hoodies for friends and family to don, proclaiming their Love for their Tubie.  I so, so desperately want to buy Aidan a Super Tubie shirt!!

I think it would be a great look on hospital day, no?

Fun Finds - "When Jeremy Jones' Stomach Stopped Working: A Story for Children with G-Tubes"

I stumbled upon a great website the other day - http://www.mitoaction.org/

Mito Action is meant to educate, support, and advocate for families dealing with Mitochondrial Disease (Mito). Mito is a genetic disorder where mitochondria of the cells fail to produce enough energy for cell and organ function. Mito can cause poor growth, weakness, neurological problems, delays, and diseases of nearly every organ in the body. The prognosis is really unclear - some people live fairly normal lives, while others are severely compromised.

There is so much more to learn than I could ever tell you - head on over to Mito Action to read more and to get involved.

What brought me to the page was a book that the organization puts out. It's called When Jeremy Jones' Stomach Stopped Working: A Story for Children with G-Tubes.

Jeremy's a fun, active kid.  He sings during class and catches tadpoles in the creek.  He also has gastric dysmotility, which means his stomach feels very full after only a few bites.  He gradually loses weight, and has less and less energy to do the things he loves doing.  Jeremy needs a G-Tube, and we learn more about them right alongside him.  Jeremy loves his new tube, and it helps him grow strong and tall.

Mito Action was kind enough to send a book to Aidan.  I am looking forward to reading it to him and using it to explain to and educate others about G-Tubes.

Aidan's Tubie Friend!

Meet Toby.  He's Aidan's new Tubie Friend.  We adore him.

Toby was a gift from a group called Tubie Friends.  I've written about them before, and their basic mission is to provide "just like me" friends to children with tubes.

Aidan's Tubie Friend, Toby, has an NG tube (like Aidan) and a G-Tube (like Aidan will be getting in the future).


Toby arrived with a card from the Tubie Surgeon, some feeding accessories, and a letter from the organization about what they do.

 

We are SO thankful to have received Toby.

I like your pretty bracelet...

A sweet little girl in the CHOP waiting room was very impressed by Aidan’s bling.  It’s so shiny, mommy!  It’s just like your pretty bracelet!  Can I get one too?

I think kids are born to admire.  What a cute, teeny baby!  What a shiny bracelet!   What a cool special lunchtime chair!  Little kids seem to just understand to look for what’s the same, rather than what’s different.  Aidan’s just another kid – he’s silly, he’s loud, he likes to run, he doesn’t like having his nose wiped.  He’s exactly like them, except for when he’s a little different.  Kids don’t pity him, or worry that they’re going to say the “wrong” thing. They look, they accept, and they play.

I wish adults saw him that way.   They don’t.  Some days, even I don’t.  It’s a struggle.  It’s so ingrained in us to point out what’s different and to internalize it.  I can’t imagine how awful life would be if I couldn’t eat pizza.  It would be – for me.  I love pizza.  But for him?  Not so awful.  He doesn’t love pizza.  He loves laughing, and he loves running, and he loves playing – and none of those things are going away. 

When I look at that arm, I see a little boy who needs more attention and more care.  But that little girl saw shiny and pretty.  And do you know what Aidan sees when he looks down?  An arm.

For seriousness's sake, Aidan does wear MedicAlert's Child's Steel Bracelet.  It's wonderful for peace of mind - a simple call to MedicAlert will tell first responders of his allergies, his condition, and his emergency contacts.

For space's sake (he's tiny, and so is his bracelet) we chose to have the following engraved, along with his MedicAlert ID number.  These are the most emergent of his issues - the EGIDs can be learned of later - but these are the thing that will alter the way care is provided in an emergency situation.

FOOD
INDUCED
ANAPHYLAXIS
REACTIVE AIRWAY
DISEASE.

They are so very affordable - we highly recommend MedicAlert.  They'll help you determine what to engrave and how to size the bracelet.  And they're oh so stylish!

Calling All Caregivers - Food Allergy Babysitter and Drop-Off Child Care Form

A fantastic organization called Kids with Food Allergies (KFA) has provided a guide to review key food allergy management principles and to inform other caretakers about your child's specific food allergies. It's a really handy reference for playdates, birthday parties, and other drop-off situations.

Download the guide here in full color.

This will definitely be posted in our kitchen for friends, family, and sitters to see.  I hope to convince daycare to post this in Aidan's classroom, too.  I love enormous visual reminders that Allergy Kids need some special care.

Organizations That Matter - Tubie Friends™

From time to time, I stumble upon an organization that I think is really worthwhile.  I'd like to share one today, because I think it's both touching and important.

Tubie Friends™ was started by a group of moms whose children have been or are currently using a feeding tube as a primary source of nutrition. We’ve seen what a comfort a Tubie Friend™ can be during a hospital stay, procedure or just when they need a friend. In addition to bringing comfort to the child, these Tubie Friends™ can also be used as a teaching tool for family, friends and caregivers. Our goal is to take the fear out of feeding tubes, one Tubie Friend™ at a time.

I took that description from their Facebook page, because I think it's such a good one.  These people take time and resources out of their own busy lives and send joy to children, one Friend at a time.  It's such a good way to promote feeding tube awareness, and it's an even better way to start conversations among children that promote understanding and acceptance.  What an amazing visual aid to take in to show and tell.  What a comfort to a frightened child facing their first tube placement surgery.

Go check out their website!

I have reached out to this organization to let them know how strongly I feel about the good that they're doing and to see how I can help.  We sent a donation in the form of a Build-a-Bear giftcard that allowed ten other children to receive Tubie Friends™ of their own.  I am heartened to see someone spending time on a child's day-to-day quality of life.  Our children are more than their diseases and disorders.  They're scared, they're curious, and they want to fit in with everyone else.

You can bet that if we go the tube route, we'll be relying on the kindness and generosity of the Tubie Friends™ organization to bring Aidan some joy.