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!

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.

Update: April 4th Scope & Biopsies

A few weeks ago, Aidan had his second scope.  The first scope took place on December 14th and showed lots of eosinophils in his esophagus and colon.  We were hoping for better this time.  Aidan had been almost entirely elemental for the past seven months (minus one very very sad rice trial), so hopes were high.

The morning began with a very early wakeup.  I packed a sleepy, confused baby bug into the car, tucked him in with his blankets, and hoped that he fell back asleep (nope).  We arrived just as CHOP Exton opened - we were the first patients in the door that morning.  We were taken directly back to the pre-op waiting room, where Aidan changed into his CHOP jammies and we played.

As nerves began to set in (mine, not his!), I gave Aidan his beloved balloon (Ballooney!) and his beloved Tubie Friend (Toby!) and we waited to be called back.  We didn't have long to wait - Dr. Liacouras starts his day bright and early.

We soon found ourselves in the back, having vitals taken and being chatted up by the anesthesiologist.  We argued back and forth for a while about whether Aidan was well enough for the procedure - ultimately we agreed that he was - and were finally given the all-clear for the Versed.  Versed is the happy juice that children at CHOP get before a procedure.  It makes them a little silly, a little sleepy, and totally willing and happy to wave bye bye to mommy and be taken off to places unknown with a strange nurse.

Aidan went from happy to sleepy to zoned out to almost totally asleep within about ten minutes.

Around this time, the nurses told me that they were ready to take him back.  I was left in the pre-op waiting room, thinking about him and hoping that things went well.  He was in excellent hands, I know, but it's always a bit nerve-wracking to see your child put under anesthesia.

Less than thirty minutes later, Dr. Liacouras came out to let me know that he did wonderfully.  Things were visually "beautiful" and we'd have more results in about a week.

A few minutes later, I was brought back to see my sleeping beauty, who took his time waking up and didn't exactly come out of it smiling.  Waking up from surgery is always tough, isn't it?

I have so much love and affection to the nurses at Exton.  They treat us as though we're the only patient there that day (which is FAR from the case).  By the time Aidan left, he was all smiles and flirts.  Toby Tubie was feeling pretty good too :)

Several days later, we got the call from Dr. Liacouras.  Somehow, we've made the right decisions, because HIS SCOPE WAS NORMAL!!!  What this means for us is that now we know that he has the ability to feel good.  We have a good baseline for our future food trials.  This is really exciting news!!!

Picture Post

I'm sorry my words have failed me this week.  I mentioned last week that we had made some big decisions around Aidan's feeding and nutrition, and we knew it would be a difficult transition.  To say that it has been would be an understatement.  I've needed a little bit of time to process things for myself and haven't felt the urge to write anything.  We'll be back to our regularly scheduled programming next week, but for now, I'll leave you with this...

(Big thanks go out to Tubie Friends, who you'll hear more about very soon.)

What do you mean I brought the wrong kid to school?

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.