Thursday, February 28, 2013

Our Neocate Story - The Background

When Aidan was nine months old, he began drinking Neocate.  I firmly believe that it saved his life.  It wasn't until he began the Neocate that he started growing and thriving - gaining weight, taking developmental leaps, and laughing.  Watching his beautiful personality unfold was a gift that I can never repay - because I truly believe with all my heart that we never would have made it to this day without Neocate.

You'll understand, then, why I'm so heartbroken that Neocate is failing us now.

The first year on Neocate was wonderful.  I use the word "wonderful" sort of ironically, since "wonderful" included more hospitalizations and stress and worry and surgery than any baby should have to endure - but through all of it, we could trust that his formula would keep him strong and healthy.

In August 2012, Nutricia redesigned the graphics on the label of the Neocate Jr. can.  It was such a non-event, I didn't even give it a second thought.  I wasn't sure when I'd see the new label, but I didn't care - it's a label.  Whenever Medco got it and shipped it, I'd have it.  More importantly - who cares?  It's a graphic on a label!  

This non-event started making news soon after the "New Label Neocate" hit the shelves - small pockets of people began voicing concerns with the formula.  Children who had been tolerating it for a lifetime suddenly couldn't tolerate it any longer.  Late in 2012, I did read something about this online - but we've had so much of our own going on, I just didn't have the emotional energy to give this more thought than Oh how awful.  I hope they fix it.  I'm so glad that's not us.

January 2013...  Our new shipment of Neocate arrived - (and oh, hey, there's that new label) - and life was busy, and I was getting ready to go back to work, and I didn't have much time to connect one dot to another - but Aidan was sick.  A stomach bug, but not a stomach bug, because he never got worse and he never got better.  An allergen exposure, but not an allergen exposure, because keeping him home/cleaning the house/increasing our vigilance never helped. 

First, we noticed the allergy face.  The tell-tale scaly red eczema rash on his face that always tells us he's gotten into something.  That comes with the allergic shiners - the ones that make him look like he's gone a few too many rounds with the heavyweight champion of the world.  But of course it didn't stop there.

Then came the diarrhea, complete with blisters and open sores anywhere that poop touched his poor little bottom.  And the vomiting, more often than not, when he drinks or we pump in formula.  Vomiting that leaves him dry-heaving and exhausted in the middle of the night (and let's not get into the increase in laundry...)

Maybe the worst part is his mood.  My normally sweet-natured little boy becomes so angry - furious with the world for making him feel so badly, and furious with me for not fixing it.  (No, I take that back.  The worst part is definitely the vomiting.)

So here we are today, two months later, feeling angry and confused and betrayed by what has always been a constant source of reassurance to us.  My little boy cannot eat - literally cannot eat - without being violently sick.  And we can't just stop feeding him - we have to keep trying - so every day is just as awful as the one before.

We are not in this alone - and over the coming days I'd like to tell you more about what we've tried and what we're planning to try and what our path forward is.  In the meantime, you can learn more about children just like Aidan who are living this too.

Save Little Michael

Lidija's Hope

Tuesday, February 26, 2013

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...


Clifford hides from Aidan
Isn't he dainty?

Monday, February 18, 2013


Q: When is a 1" x 2" rectangular piece of plastic worth $25 + shipping?

A: When it's a Corisafe!

Seriously, I'll admit it, I was skeptical. $25 is a lot for an unemployed mama just trying to keep her kiddo fed.  And this thing doesn't look like much.  It's about as plain-jane as you can possibly imagine - so what's all the buzz and why on earth am I suggesting you part with your hard-earned pedicure fund for one?

Let me start by explaining how we got to the place where we needed one.

Aidan's first tube was placed when he was just a year old.  Sharp little eyes + nimble little fingers + a feeding port = trouble.  Stinky, leaky TROUBLE.  And no offense, everyone, but your ideas were awful.  Tape it?  Gross!  After the 20th taping and untaping, there was so much tape residue that I couldn't even see the tube anymore, and that was on day THREE of the month.  Plus - hello! - sticky gluey and tapey things are very interesting to toddlers.  And safety pins?  On a toddler?  Are actually just weapons.  No thanks.  Everything I did to get him to leave the tube alone was just encouraging him to futz with it more!  Obviously these weren't the solutions for us.

I don't even remember how I found Corisafe online - but if I recall correctly (and how could I not?) it was precisely like in a movie.  The clouds parted, ethereal voices sang, and a ray of heavenly light shone upon my laptop screen.

The Corisafe is a very simple device - it's a locking capsule that encases the feeding and med ports of tube extensions.  It's designed to be neutrally colored and boring to look at so as not to encourage children to play with it.  Tubie stays plugged in.  No more mess.


Do you know how many times little Houdini over here has gotten into his Corisafe?   


Go check out the website at If you're a tubie family, buy one. Buy one for a friend (there's a very substantial discount for buying multiples!). If I had my way, NO tubie would be sent home from the hospital without a Corisafe.

It has very quickly moved up the ranks from Like it, right on past Love it and straight to Can't Live Without it! in our household.  And side note - The mastermind behind the Corisafe, Mark Belanger, is extremely nice and helpful and will custom-modify your Corisafe(s) to fit your particular tube extentions.  Can't beat that!

Monday, February 11, 2013

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

Thursday, February 7, 2013

What Nannies Need to Know About Allergies

A couple of months ago, another blogger reached out to me to share an article with me that seemed pretty relevant.  It's called What Nannies Need to Know About Allergies, and it really did get me thinking.  While the article is fairly high-level, I appreciate the attention to the subject matter.  The fact is, it's really important to think about allergies when you're caring for someone else's child!  And I'll admit, I never really thought much about it prior to having my own child. 

So what does a parent with a Nanny have to think about these days?  Obviously, the Nanny should be informed of the allergies that the child has, and should be trained in the proper use of an Epi Pen.  The article I mentioned above notes that families often keep "allergy foods" out of their houses - but honestly, I find this often not to be the case.  Not all family members have the same restrictions, and in some cases, an allergic child may have so many restrictions that it's not feasible to clear the home of all unsafe foods. 

In my opinion, the most important thing that a Nanny or other caregiver should be taught is how to recognize a reaction.  Because it's not just a child who falls to the floor lifelessly.  It's also a child that's starting to cough, whose nose or eyes are starting to run, whose face is becoming flushed, whose skin is becoming rashy, or whose mouth feels "funny."  It's a child whose tummy doesn't feel good, whose ears are flushed, or whose scalp is itchy.  These (and countless other) subtle signs are so often missed - and these are the times when a quick administration of Benedryl can head off a worse reaction.  If nothing else, I hope my Nanny knows this and tells the other Nannies she knows.

So how about you?  What do you tell your allergic child's caregivers? 

Tuesday, February 5, 2013

The Week of Azul

Quick update on how we’re doing.  I’m back at work, which means Aidan’s doing his own thing.  And to be honest, “his own thing” is a lot more exciting with Aunt Mimi than it ever was with Mama. Outings GALORE!  And oh, the PUPPIES!

Last week was Blue week – and it turns out there’s more to Blue than a certain spotted canine!  I happily watched (via text) as my toddler learned the sign and the word for “blue”, hunted through the weekly theme box for his favorite shapes and textures in the color du jour, and collaged with feathers, stickers, papers, clippings, pom poms, pipe cleaners, crayons, markers, and glue.  All in cerulean, of course.

I also learned some things I didn’t know about my son.  He loves glue and pom poms.  He thinks feathers are creepy.  And also?  He’s a master manipulator.

Okay, I guess I knew that last bit already.  But it’s easy to forget when you know someone so well and you’re with them all the time.  I know his tricks by now.  For instance, you have to be ultra clear and extremely precise with him.  You cannot simply say “keep your head down!” when you want him lying down for nap.  Because then, for instance, what you’ll get is a toddler whose head is down but whose body is up and running about.  In seriousness, that’s what you’ll get.  (Right, Mimi?)

Overall, it’s been a week of limit-pushing.  Typical Year-Dos behavior, I think, trying to see what’s acceptable and what isn’t.  (Un?)fortunately for him, Mimi stands her ground and they’re working their way to an understanding.  He’s learning so much, and I’m so happy, because that’s all I want for him.  To learn, and to love, and to be loved to metaphorical bits and theoretical pieces.

Mission Accomplished.