Happy Global FPIES Day!!!!!

Today is Global FPIES Day!  If you had asked me 2 years ago what FPIES was I would have no idea but today we live it.  Two years ago we had a very sick six month old.  We were finding blood in his diaper, he would sit up a lot and wasn't really gaining weight.  We were at a loss, we were scared and we were desperate for answers.  The same stomach bug was not effecting our baby over and over.

Then he was hospitalized:(  He had sever dehydration, C-diff and was losing weight.  We spent the weekend in and out of the ER before he was finally admitted and we were first seen by a GI Specialist.  When in the hospital it was decide he would be put on an Elemental formula.  After 5 days and several different bands and flavors of formula were tried, all of which were refused, he was sent home, still on Prosobee Soy Formula.  We spent the weekend with a very sick and unhappy baby.  Tuesday we had our follow up with the GI in his office.  The doctor walked into the exam room took one look at Ryder and said "pack your bags".  Ryder was readmitted for an NG tube and elemental formula.  
A few weeks later a friend sent me a link to an ABC News story and said this sounds like Ryder.  I brought this up to his GI and it was quickly pushed off.  The GI's reasoning was Ryder doesn't usually throw up except with Soy so he cant possible have FPIES.  After reviewing his case with his PCP and a local Allergist we found a new GI.  On March 25, 2014 after almost 2 years and with our first visit to our current GI we finally herd the words..."Your son without a doubt has FPIES".  While this was a bitter sweet moment we now knew the beast that had made our boy so sick for his whole life and we could deal with it!
The problem with an FPIES diagnosis is so many practitioners have never heard of it!  It is very difficult to diagnose as it is basically a diagnosis based on a cluster of symptoms as there is no test that can be done.  Although it is an allergy traditional allergy testing doesn't work for FPIES.  For more information or to donate to FPIES research please visit www.fpiesday.com!

Ryder at 30 months (2 and a half):
*finally in size 5 diapers
* in mostly 24 month clothes
*size 7 shoe
*is taking about 20 ounces of Elecare Jr formula from a bottle and water from a sippy cup!
*eats a variety of fruits and veggies, puffs, Cheerios, pasta, graham crackers, Ritz crackers beef and pork too! Seems to like the Enjoy Life Chocolate Sun butter Bars, but mostly just peanut butter and jelly sandwiches on whole wheat bread and bananas
*sleeps horribly even when in bed with momma:(
*still very ticklish!
*still 17 teeth
*weight  30 pounds exactly
*height 34.5 inches
* still really loves his binkie, he even tries to eat with it in his mouth
*His vocabulary has completely exploded ...when he takes his binkie out
* Loves Mickey Mouse and Jake and the Neverland Pirates
* just finished a 5 week coarse of anti-biotics do the c-diff again:(

FPIES Confirmed!

He have seen many Doctors with Ryry since first finding blood in his diaper at 3 weeks of age.  We have heard all kinds of diagnoses from stomach virus to intolerance to allergies.  We have heard "I suspect it is FPIES" and "I'm leaning toward FPIES" and "I don't want to call it FPIES but...." well today we heard the words "Have your heard of FPIES?"  I nodded.  "Your son without a doubt has FPIES."  I feel validated!  Getting a 3rd opinion this time from a Doctor knowledgeable in FPIES was by far the best decision we have made!  We also discussed some of Ryder's other symptoms that may not be FPIES and it was determined the he also has severe reflux. So the diagnosis is finally in his charts  FPIES with Severe Reflux!

The Plan:  For now we continue with what we are doing for food.  Basically get most of his nutrition from Elecare and the rest is bonus!  We are being referred to an allergist at Boston Children's that know FPIES.  When we are ready to trial foods that he has reacted to, probably not until after age 3, he will most likely trial that food while at the hospital. He is also now on Zantac, we will see how that goes.  We are avoiding the following: soy, dairy, poultry, raspberries, coconut, eggs and carrots.

Ryder at 23 months:
*and yes, still in size 4 diapers
* in mostly 18 month clothes
*size 6 shoe
*walking! RUNNING!!
*is taking about 25 ounces of Elecare Jr formula from a bottle and water from a sippy cup!
*eats a variety of fruits and veggies, puffs, Cheerios, pasta, graham crackers, Ritz crackers beef and pork too! Seems to like the Enjoy Life Chocolate Sunbutter Bars
*laughs and smiles a lot when he is feeling good
*sleeps horribly unless in bed with momma:(
*still very ticklish!
*still 17 teeth
*weight  25pounds 8.5 ounces
*height 33 inches
*head circumference 19 inches
* really loves his binkie, he even tries to eat with it in his mouth
*signs more and all done
*now says bye a lot and even says wuv oo (love you), fank woo (thank you), peee (please), Kicky (Mickey), Day Day (JJ), binkey, baba, Auntie, Momo (Molly, our friend daughter), Oa (Noah), Popy (Popsie), Memaw (Gramma)...and so much more!
* Loves Mickey Mouse and Dake (Jake and the neverland pirates)

Feeding Tube Awareness Week....

As the week is almost over I wanted to remind you that we sometimes love a tubie.  I tubie refers to a child that has a feeding tube.  That was us once and may be again.  With Ryder's illness he sometimes needs some help with his nutritional needs.  He is still fed 28 ounces of a special formula everyday even though he is almost 2.  Even with the formula he is not gaining weight as he should. I the last year he has gained less than 6 pounds and in the last month he has lost 6 ounces meaning he has gained NOTHING in a month! Part of this is because if you look at the rest of his diet its just that "diet" food.   It was a huge thing for us yesterday that he ate an entire Peanut Butter and Jelly sandwich for dinner (and I believe he had some for lunch).  So are we loving a tubie right now?  No but we have been and still might be again.  Please don't stare...ask questions!  Most tubies and their parents are more than happy to answer your questions if you are being curious don't be mean!  These children face enough challenges. 

In the hospital after getting his NG tube (3/5/2013)

Smiley boy at home

How we kept his tube attached when not being used

Tubie Tubbie!

For more information please visit

20 Months

Ryder at 20 months:
*and yes, still in size 4 diapers
* in mostly 18 month clothes
*size 6 shoe
*walking! RUNNING!!
*is taking about 28 ounces of Elecare Jr formula from a bottle and water from a sippy cup!
*eats a variety of fruits and veggies, puffs, Cheerios, pasta, graham crackers, Ritz crackers beef and pork too but no Raspberries! Seems to like the Enjoy Life Chocolate SUnbutter Bars but not the Apple Cinnamom ones
*laughs and smiles a lot when he is feeling good
*sleeps most nights getting up only once...about once a week he has a bad night and is up almost every hour:( but those are getting less frequent
*still very ticklish!
*OMG 17 teeth
*weight  24pounds 6 ounces
*height 31.75 inches
* really loves his binkie, he even tries to eat with it in his mouth
*signs more and all done
*now says bye alot and even says wuv oo (love you)

19 Months!

Ryder at 19 months:
*and yes, still in size 4 diapers
* in mostly 18 month clothes with a few 12 months still
*size 5 shoe still
*walking! RUNNING!!
*is taking about 28 ounces of Elecare Jr formula from a bottle and water from a sippy cup!
*eats a variety of fruits and veggies, puffs, Cheerios, pasta, graham crackers, Ritz crackers beef and pork too but no Raspberries!  Loves Stacey's Cocoa Pita Chips! Also loves Triscits Dill and Olive Oil Crackers
*laughs and smiles a lot when he is feeling good
*sleeps most nights getting up only once...about once a week he has a bad night and is up almost every hour:( but those are getting less frequent
*still very ticklish!
*OMG 15 teeth as of this morning
*weight  21  pounds  8 ounces
*height 1.375 inches
* really loves his binkie, he even tries to eat with it in his mouth
*signs more and all done
*says quite a few words including Mommy, Daddy Owa (Noah), Caka (cracker)
*had new tubes and his adnoids out today

Ryry at 18 months!!!!

Ryder @18 months

Ryder at 18 months:
*and yes, still in size 4 diapers
* in mostly 18 month clothes with a few 12 months still
*size 5 show
*walking! RUNNING!!
*is taking about 28 ounces of Elecare Jr formula from a bottle and water from a sippy cup!
*eats a variety of fruits and veggies, puffs, Cheerios, pasta, graham crackers, Ritz crackers beef and pork too but no Raspberries!  Loves Stacey's Cinnamon Sugar Pita Chips! Also loves Town House Garlic and Herb Stackers
*laughs and smiles a lot when he is feeling good
*sleeps most nights getting up only once...about once a week he has a bad night and is up almost every hour:( but those are getting less frequent
*still very ticklish!
*OMG 13 teeth as of this morning
*weight  22 pounds 12 ounces
*height 31.75 inches
* head circumference 18.82 inches
* really loves his binkie, he even tries to eat with it in his mouth
*signs more and all done
*has had an ear infection since the end of September
*currently on 2nd oral anti-biotic and drops
*seeing the ENT this week for possible adnoidectomy

eta: adnoidectomy and new tubes scheduled for 11/22

Buzz Agent Review: KRE-O Cityville Invasion

 

 

Will Cityville survive Dr. Mayhem?

Whether your child ends up a gifted city planner or a superhero known for defeating mad scientists, you’ll have KRE-O Cityville Invasion to thank for their future successes. Watch as Sonic Motion technology brings your kid’s dream metropolis to life!

• The KRE-O Cityville Invasion building set line includes a variety of city-themed building sets and accessories
• Sound waves trigger specific movements in the KRE-O motion bricks. Watch as the cities shuffle, swim, crash and roar to life!
• Every set comes with several KREON figures (including a mystery KREON) that kids can collect
• Dr. Mayhem and his evil henchmen have plans to invade Cityville; the Special Ops Squad hopes to stop them — each KRE-O Cityville Invasion set tells a different part of the story

The city may be growing, but something is rotten in the KRE-O Cityville metropolis — the evil Dr. Mayhem has gathered a troop of villains to aid him in his quest for world domination. Each KRE-O Cityville Invasion Building Set tells a part of the story. The invasion has begun, and the city’s fate is in its builders’ hands!
Combine any of the KRE-O Cityville Invasion Building Sets to see Cityville come to life. They’re all compatible with each other, as well as with other major building set brands. The line is available at all major retailers,  and ranges in price from $2.49 – $39.99.

KRE-O Cityville Invasion Skyscraper Mayhem Building Set

Ages 7+ / Suggested Retail Price: $39.99 / Includes 431 KRE-O Pieces
A rampaging gorilla has escaped the KRE-O Cityville zoo and is wreaking havoc downtown. Will the Cityville citizens be able to stop him?

KRE-O Cityville Invasion Police Station Zombie Defense Building Set

Ages 7+ / Suggested Retail Price: $24.99 / Includes 270 KRE-O Pieces
Three zombies storm the KRE-O Cityville police station as the KREON cops try to contain the outbreak.

KRE-O Cityville Invasion Haunted Hideaway Building Set

Ages 7+ / Suggested Retail Price: $24.99 / Includes 317 KRE-O Pieces
Ghosts and vampires abound in the Haunted Hideaway!

KRE-O Cityville Invasion Marina Madness Building Set

Ages 6+ / Suggested Retail Price: $19.99 / Includes 206 KRE-O Pieces
A shark is on the loose in the marina. Use the shark capture claw to save the day, and catch him before he catches you!

KRE-O Cityville Invasion Fire Station Dragon Attack Building Set

Ages 6+ / Suggested Retail Price: $16.99 / Includes 177 KRE-O Pieces
The mercury is rising fast as a fearsome dragon is burning things up at the KRE-O Cityville firehouse! *

KRE-O Cityville Invasion Bank Bandit Bust Building Set

Ages 6+ / Suggested Retail Price: $9.99 / Includes 152 KRE-O Pieces
A KREON bank bandit has drilled through the breakaway vault door and stolen a safe full of valuables.* Will the KREON police be able to stop him?

KRE-O Cityville Invasion Service Station Scare Building Set

Ages 6+ / Suggested Retail Price: $9.99 / Includes 174 KRE-O Pieces
Gas may cost $3.07 per gallon at the KRE-O Cityville station, but brains are free, and a zombie KREON has come to fill up his tank. *
The KRE-O Cityville Invasion line also includes a variety of accessory packs — everything from the Sonic Motion Themed Assortment to the Vehicle Booster Pack Assortment to the Population Pack Assortment. Everything your child needs to build for days.

The boys were so excited to get my latest Buzz Kit!  KRE-O Building set.  I waited a few days after I received it to let them open it but man once I did it kept them busy for hours!   They added the pieces to their Lego/ Micro Block collection and they worked quite nicely together.  The boys loved the sounds from The Sonic Motion Technology.  JJ (5) did have a bit of trouble putting the Dr. Mayhem figure together but with a little help he got it.  I like that the pieces work with their other building sets and are actually less expensive.  They have already asked for some more of the Cityville Collection from Santa.

Overall I think these sets are great and if your child like Legos or other building sets I would highly recommend them!


Disclosure: I received the product in return for my honest review. I received no compensation for this publication. My opinions are my own and may differ from those of your own.