Sharing our story....

It was a decision to make our lives visible, our FPIES experiences known.  It was my first observation in this FPIES community, that there were more blogs and support groups than there was medical pages.  Sure, there were those handful of FPIES papers- mainly from Mt.Sinai where much of the FPIES research has come from over the years since Dr.Powell first coined this syndrome that had been noted by other doctors as a severe inflammation of the entire intestinal tract, causing vomiting, diarrhea, dehydration, often lethargy and sometimes bloody stools and shock symptoms.  There were a few moms, many of them also active in the support group on babycenter, that had started blogs - to share these everyday experiences, how they learned and their tools for thriving through this rare allergy.  In June, shortly after our formal diagnosis, I began this blog outlining our journey.  The good, the bad, the ugly. I quickly learned that as I was learning, this blog was becoming more about what I was learning- my inner working thoughts of how I was tying what I was reading in journal articles to my own son.   So, I started a 2nd blog- My FPIES File Cabinet, a resource page of sorts.  A place to keep those "research" posts filed, while continuing to chronicle the experiences we were having with our little man and his FPIES.  Since then, I have also joined with other moms and founded The FPIES Foundation.   I am passionate about sharing our story, sharing my personal insights seen through my clinical nutrition goggles; but also about sharing resources, tools, experiences, and insights - not only from experienced parents but experienced medical professionals.

From June of 2010 to today, August 29, 2012; I have logged 385 posts (and yet I'm still months behind) and have had over 35,000 page views (wish I would've figured out how to put that little page ticker on my footer at the beginning); it's been humbling to see how many have followed and shared in our story.  Sharing our story has become an important part of this ride, as others have done before and beside me- it helps.

"When you stand and share your story in an empowering way, your story will heal you and your story will heal somebody else"  Iyanla Vanzant.

With the busy-ness of 4 boys and summer, the complexities of FPIES, and my work with The FPIES Foundation, I have been a little more absent from updates, but do promise they are coming.  I've been keeping a journal as we go through this muddy mess we've been in with little man's FPIES as he approaches and passes 3yrs.old and still stuck, still adding new triggers and not outgrowing old ones...the updates are coming!   Overall, he is doing well, growing and gaining weight and meeting developmental milestones, and continuing to teach us about patience and appreciation for God's simple gifts in life.

In the meantime, I would be honored if you would check out the new website for The FPIES Foundation.   It is a 'labor of love', a resource packed with tools for new families and struggling families, a place to share stories and find support - a network of caring.  A place to come home.   We are not alone.

Lazy Days of Summer

Summer has kept us busy, just having all 4 boys at home is busy enough!  We are well into the lazy days of summer and enjoying just spending time at home. 

First day of school is Sept.4th, our Kindergartner has Meet The Teacher and then starts on Sept.6th- Kindergarten this year for him!  BIG step! He's excited, we're excited, he needs this in his routine, he needs the challenges and the routine base.  My mommy guilt cries for how his childhood has been molded by his brothers chronic health needs.  I know it has benefited him as well- he is empathetic and independent (sometimes TOO independent!) in ways his brothers weren't at this age but the 1:1 time I got with the two older boys just hasn't been there for him.   This is where I need to remember that everything that has been given to us, including Sam's challenging days, are God's Will and repeat to myself..."Thy will be done" many times a day; because I do simply trust in that -- even if my human nature takes over and my guilt or impatience creep in, trying to understand what role I need to take....which parts does He want me to do? Which parts do I leave to Him?  Which parts do I ask for help with?  These are my daily struggles....where my Faith meets my human nature.  

One morning last week, I woke up (as usual) to the sound of Little Man crying "Mommy, I need you"- he doesn't transition well and waking up from a nap or night is one of those times when he needs help with the transitioning; so if I don't wake before him- I am woken to crying out for me.  This one particular morning, I woke up still half in a dream...tried to pull myself out but it was "sticking" hard....I had been dreaming about Our Lady of Perpetual Help and I couldn't "shake" it...it just kept repeating in my head.  If you are familiar with the image of Our Lady of Perpetual Help (or look it up), you will see that it is the image of Our Lady holding the baby Jesus.  I have the image, in a frame....it was my Grandmothers.  

The prayer is about needing help and remembering to ask Our Lady, the mother of Jesus, for this help- as she will advocate to Jesus for us.  So, of course we continue to pray to Jesus for assistance but we also ask his Mother to take our cares and needs to Jesus for us by praying to Mary.   We honor Jesus in this way, respecting his Mother.  The prayer and image are here: http://www.ourcatholicprayers.com/novena-to-our-lady-of-perpetual-help.html

It is again a reminder for me to ask for help, even if I don't know what I'm asking for (that is my downfall, I have a hard time asking for help and even harder time if I don't know exactly what I need).   

Maybe that is why I haven't been able to write an update....I have a hard time discussing (especially with those unfamiliar with the day in and day out of this invisible illness) because there are so many 'hidden' challenges- things that we as a family or Sam goes through that isn't "normal" but isn't something anyone can help with either.  His body wont' accept food as nourishment and yet he needs nourishment to live and thrive...that's the bottom line of this viscous roller coaster ride we are on.  And making the right choices for that balance is my constant, constant thoughts.  Food that makes him sick vs. avoiding foods with nutrients his body needs. Teeter-totter, tilt-o-whirl, roller coaster ride. 

Gone Camping!

Summer has been busy, even though we aren't doing too much away from home- or not as much as I would like (or typically do) for the boys.   But, in reality, it is a blessing in disguise...the boys get to just "be", we got some quality time with them while little man wasn't so needy and just in general spending time as a family, finding ways to maximize the summer hours while still meeting little one's needs (of eating every 2hrs, not getting over heated,etc).  

We have continued to push the ProViMin and the recipe with the double hemp milk has helped his energy level considerably.  And lately, he is really sprouting in developments of language and other skills (writing, drawing,etc) and it's been fun to watch him learn more everyday. He's not been overtly behind on his development, the skills are there- just not enough chances to practice them between being sick so getting to see him just sit and draw, create pictures, learn new words and concepts...it is fun and rewarding...and not lost on us. 

When I updated last, we were on our way camping.   We left on Friday after a lab draw.....hubby had went ahead of me with the 3 other boys to be there for the week, in a borrowed RV- from a close family friend (another firefighter family).  Without the RV, we couldn't consider taking little man- for 1). it was a week, a long time to be camping with a child with special dietary needs and 2). hubby would have taken the van (and a tent), so we wouldn't be able to join him for just the weekend, which is what we were doing now.   I drove up with little man, who slept much of the way (thankfully) on Friday.  

He was SO excited to see daddy and his brothers, and Papa and Gma and to BE CAMPING!!  This little boy LOVES the outdoors.   Thankfully, Saturday was "only" in the 80's or so and he was able to be outside most of the day, we took him into the (air conditioned camper) after lunch to get him cooled down and hopefully get a nap out of him but no going, once he had a bottle and was cooled down- he wanted to be back outside, and soaking up all he could.   Hubby ended up taking him for a drive in the van down the road later that afternoon because he was so tired and overheated and needed some downtime.   Sunday came and we weren't sure if we were going to go home Sunday or Monday morning but with the forecast for the 90's and he was already showing signs of overdoing it on Saturday, I didn't want to push our luck so we drove back on Sunday afternoon (a 5-6hr.drive that took us more like 8hrs coming and going)- he again slept alot of the drive.   He was glad to be home and even more excited when daddy and the boys got home on Monday night.