Processing....Perspective on Graces received in 2012

Processing...a coping and learning tool I have learned to utilize and strengthen and allow myself on this journey with my son.   With processing brings perspective.

The past months have been a lot to process, the past years have been a lot to process but from long term TPN last summer-winter, followed by food trials (and fails), followed by a formula challenge, an NG tube, formula adjustments and building intolerance, a G tube, a new formula, an 8th formula fail, intestinal inflammation, an expanding menu, functional medicine practitioner, healing properties of broth, trusting my gut, occupational therapy, speech therapy, a growing and thriving little man in spite of all of his road blocks. It is always a lot to process as we learn on each new step of this journey.

If you're following my blog, or more so- the sequence of Little Man's journey, I am attempting a slew of catch up posts (backdated to keep the entries in order).   My postings slowed down around Feb.8th (yes, almost a year ago!) when little man was admitted to the hospital via the ER because of a fever for a potential line sepsis infection (when he still had a central line for IV nutrition/TPN) that turned out to not be a line infection (thank goodness!!) but instead confirmed FPIES reaction (fever, vomit, elevated platelets and leukocytes and neutrophils-with a left shift).  It was a very rough time for us, as a family- with little man's health and medical care, with needing better treatments from his medical team, seeking new consults and fresh opinions, needing a change of course and not knowing which path to follow.  I prayed. A lot. And, I can't say at what point it happened but a new growth- a new level of faith was graced upon me. God looks out for the birds and the crops- why would He not look out for Little Man?  In whatever path. Whether it be my chosen direction or not. As long as we follow His path, He will show the way.  I know that sounds "preachy" or "religious" (what does religious sound like anyway?) but it isn't meant to me....I can't quite seem to paint my soul - this faith that lies within.  This faith that is only possible through graces -- graces given as gifts, from Above.  Asking for graces allows Him to strengthen faith....not asking for Faith or expecting false hopes....you can't be given faith- you reach it with His grace.   So much processing, so many perspectives granted. I prayed for graces.  I needed them.

Graces to get through what we were to endure during those long months this spring and summer.  What Little Man was to endure. The grace to stand aside and let God lead (I had to pray hard for that one!).  The months to follow- through the above mentioned circumstances, were very tough. But, I was ready.  God had granted me the graces to get little man,and our family through another very hard time -- and (hopefully) come out stronger (and wiser?)...and on new paths. I will attempt to continue to update this blog, taken from journal entries over the year- in case there are others that would like to follow along our journey.

Strength from graces, shielded by Faith, we look forward to 2013.

Faith...

As we await more interpretation of results from Dr.J, with words like "genetic variation...some systems causing aberrant responses...overall innate immune responses are a little suppressed...atypical FPIES results....not surprising..." floating around in my head of initial interpretation of the results.  I know these mean complexities are in store....but we already know he is complex.  Putting the terms (and possible additional diagnosis') to what we already know is going on in his body, actually gives me more peace....more resolve.  We know there is more to his FPIES, our GI calls it atypical FPIES, another GI we saw in consult last fall called it "FPIES plus", we know there is more going on- but what is it.  

I came across this story the other day, and wanted to share it....now seems like a good time....life really is what you make it, how you see it.  I continue to view Little Man's chronic illness as our gift, he is our gift so anything that comes with him- I will accept.   

"Faith is not about everything turning out OK; Faith is about being OK no matter how things turn out".
A blind boy sat on the steps of a building with a hat by his feet. He held up a sign which said: "I am blind, please help." There were only a few coins in the hat.

A man was walking by. He took a few coins from his pocket and dropped them into the hat. He then took the sign, turned it around, and wrote some words. He put the sign back so that everyone who walked by would see the new words.

 Soon the hat began to fill up. A lot more people were giving money to the blind boy. That afternoon the man who had changed the sign came to see how things were. The boy recognized his footsteps and asked, "Were you the one who changed my sign this morning? What did you write?"
The man said, "I only wrote the truth. I said what you said but in a different way." I wrote: "Today is a beautiful day but I cannot see it."
 Be thankful for what you have.. Be creative. Be innovative. Think differently and positively. When life gives you a 100 reasons to cry, show life that you have 1000 reasons to smile. Face your past without regret. Handle your present with confidence. Prepare for the future without fear. Keep the faith and drop the fear. (author unknown)

Overwhelmed but....

Overwhelmed and scared, nervous, anxious and yet calm about Little Man's upcoming procedure tomorrow.  He will have a PICC line placed for TPN (total parental nutrition) to bypass his gut, for gut rest and restore his villous atrophy and heal the inflammation.  We are hopeful this could be our Christmas gift this year....it is after all our only wish, the whole year.   We know it will not erase his FPIES, we are coping with his FPIES.   But what we would like to see is a better course of healing and action for next steps....we can't seem to get to those next steps because of the vicious cycles we keep getting trapped in.  So, gut rest may get us past these cycles and onto next steps....and/or it will offer additional clues as to why we have kept getting stuck.  

I was feeling overwhelmed this morning, as I think about the day tomorrow...and the weeks to follow.   And yet, a calm and peace came over me...a little bit later I read a poem that puts in words how that peace washes over me, and what helps me to go on...it goes deeper than my own strength, that I know. 

He Keeps Me Going

by Betty Purser Patten

It's God that keeps me going

When my world just falls apart;

It's He who lifts my spirit

When I grow faint in my heart.

His love always sustains me

In my trials and distress;

I don't think I could make it

Without God, I must confess.

It is not my cup He fills up-

It's the bucket that I bring.

It's not the song He gives me -
It's the symphony to sing.

It's no the lamp He offers -

It's a floodlight as I walk.

It is not a voice that whispers -

But a heart-to-heart heard talk.

It's not just showers of blessings

Teeming riches does He give;

It's God that keeps me going

Every moment that I live.

Without God, I would not have the strength to endure such a difficult thing for a mother -- the need to nourish and feed their child.  Without God, I wouldn't have the instincts that connect me to Little Man that go deeper than anything I've ever encountered; a burning instinct that burned in the pit of my soul more than anything I've ever experienced....without my instincts, I would get overwhelmed and not be able to escape.   Once I started believing and trusting in my instincts, I was no longer so overwhelmed.  

God doesn't fill my cup, he fills my bucket.  He fills it with the beauty of a family that is sticking together, all for Little Man- that is not giving up when it gets tough, we just get tougher.  Two parents that are bonded together in unity of fighting against FPIES, fighting for best treatments and options, and quality of life in the face of a chronic illness.  3 little boys that always think of Little Man's needs, and want to help in any way they can.  A "band of brothers" they are, the bonds they are creating while enduring this journey will bring them closer on a deeper level than anything we could have taught them.  The meaning of love and sacrifice, perseverance and instincts.  The meaning of unconditional love.  My bucket is full.  

It is not a song to sing but a symphony of Awareness.  Of using my voice (He didn't give me this "big" mouth for nothing) and passing along the information learned, of raising awareness for future children with this illness, of raising awareness for the need for support for the family's behind the children with FPIES.  Of being a part of something outside of our own personal FPIES story, to further help other protein intolerant children. 

It's not a lamp He offers but a floodlight....a floodlight in a maze...a floodlight of friends, new friends created in a FPIES support groups, old friends offering words of inspiration and comfort- stepping out of their lives from miles away to reach into ours for a moment to offer us that little glimpse of hope and strength.  A floodlight of family, sisters who give up their lives to move into yours, who are always there when needed.  Family who gives conversations of comfort, and encouragement.  Family who visits and gives the gift of love in their presence, passing their strength in a simple hug.

It is not the voice that whispers, but a heart-to-heart heard talk.  How I can go to sleep with worry on my mind and wake up with conviction of thoughts, and a rested soul.   How, a very real heart-to-heart with close friends can be the words of God spoken to me. 

It's not just showers of blessings- we have received so many blessings.   Is FPIES a blessing in disguise?  Everything is a blessing in life when we know that God is with us and that everything is happening for a reason.   

So, I am overwhelmed that my little man is having a procedure tomorrow morning....I am his mommy and that is my job- to worry about him.  But I have Faith that the roads we have traveled and the one we are on right now, is in His hands.    He keeps me going....

Lessons....sharing....

The past two days consisted of two full appointments, with Pediatrician and GI doctors, appointments to move to next and new steps.  History was discussed, past reactions and steps taken to get to where we are at today and next steps discussed on how to move forward from today to continue to get Little man to a healthy baseline to thrive through these FPIES years.  The pediatrician's goals are simple: growing and developing on track.   GI's goals are more complex.   Learning about treating FPIES here, learning from Little Man, learning how to avoid his allergens while still helping him thrive with the nutrients and medications he needs.  Developing protocols for treating FPIES, for food challenges and trials.  But right now, today, Little man continues to have bloody stools and the GI doctor has moved this up to top priority to seeing if further testing can tell us why.   Little man will undergo his 3rd scope on Friday morning.  Our GI will peform that scope and run some new tests/biopsy's. 
The past two days have been busy, and my head is spinning from all the potential progress....and while Little Man maintains a beautiful baseline.  He is a happy, playing, cuddling, kissing, giggling little boy the past few days and we are enjoying every minute of it. 

Last night, a friend posted her Lessons FPIES has taught her.   FPIES mom's come from all over the country, all over the globe!  We connect on this level....every one of us has a picture in our head that goes with each of these lessons learned....I not only want to link to Carter's Maze but also share her text here.  Thank you Carter for teaching your mommy, who teaches me, who supports me, who has shared so many of the ups and downs over the last 6mo. with me.   FPIES has taught me these lessons as well.  

Carters Maze: Lessons

"Things FPIES Has Taught Me . . .



· Two year olds have more compassion than the average 30 year old.
· Walking around wearing a shirt with vomit stains really isn’t that embarrassing
· It is possible to go a whole day with poop on your shirt and not know it and not care
· Doctors are human too, which means they are fallible
· Doctors don’t keep up with the latest research in their field of expertise
· Crumbs are scary
· “A taste of this won’t hurt” is completely untrue
· The internet is amazing. You really can find anything!
· Mommy instinct should always be acknowledged
· Poop really is a four letter word
· The American culture is completely intertwined with food
· Support is essential to sanity
· Passing a food feels like a kid on Christmas morning
· Failing a food is heartbreaking
· Just reading food labels will not keep our kids safe
· Seeing your child’s face covered in food can bring tears of joy to your eyes
· A birthday cake doesn’t have to be made out of flour or even food
· Every sunrise is a chance to start over, full of possibility
· Strength is tangible
· Sleep is optional
· It’s amazing how creative you can be with foods
· No matter how many children you have, you are never prepared for this!"

And here are my additions:
-Corn and soy are in everything
-Projectile poop is something new, even to a 4th time mom...

-Acidic vomit stains carpets...
-FPIES is an ironic, ironic world
-Love and support of family and friends is truly amazing
-I used to think I knew what busy was...
-I used to think I knew what tired was...
-I never knew how strong a sick baby could make me
-Everything amazes me and nothing surprises me anymore.
-Instincts are amazing
-Faith sustains me
-Everything, every.little.thing, happens for a reason.

Never Alone....

A relationship you have with your siblings will be your longest relationship in your life. I truly believe one of the best things my parents gave me is my siblings. I hope our boys feel the same way about each other as they grow.

I have 4 brothers and 2 sisters. They mean the world to me, and I know they would move mountains for me if I needed them to. My sister's have been invaluable to me through this last year. My youngest sister A.(almost 14yrs separate us!) came to live with us this winter/spring when things were so very rough with Little Man that I was barely keeping up. The morning she arrived, she did more in 3hrs. than I had been able to do in 3 weeks- laundry, dishes, games with the big boys. Taking care of little man had become a full time job. Right before his first hospital admission, his daddy and I had both been calling in sick to work because it took both of us to care for the boys throughout the day because little man was so sick and in constant pain. A. stayed with us for 3mo. and it was a gift. My other sister K. has been available, almost at the drop of a hat....she lives closer and visits often (never often enough though!) ;)

It is our hope that our boys always have the strong bonds they are forming now and carry with them, for each other, for life. Our eldest struggled with Little Man crying episodes, when the "colic" started at 2 1/2mo. old - he wanted to help so badly; he is a responsible leader. Our second son cringes at the thought of Little Man getting his blood drawn, an IV placed, even a blood pressure check makes him hurt for him- he has a sense for other people like no other, he is a protector. Our third son is too young to fully understand what is going on, and has started feeling the pangs of jealousy as this journey goes on and on and on; but he has been so patient- so loving.

Their bonds will be stronger than they would have been had Little Man not gotten so sick.

With Little Man's illness, we have had to strengthen from deep within, a strength that could only come from Above - to perservere through the many days of crying and crying with nothing to do, nothing to stop his pain, no direction to go in, trapped. It has been a very, very difficult year and I will never forget the long days and nights. But I am not one to dwell on such things for long and choose instead to focus on our blessings.

We celebrate a year, Little Man's 1st year, a year to a diagnosis. We celebrate the gifts Little Man has given us....patience, perseverance, advocacy, empathy, love, knowledge, faith, closeness, trust, blessings, support, strength...

Faith, Family, Friends....

Never Alone....

Finding a baseline

Phrases like.....Instincts, advocacy, proactive in treatment, Dr.Mom....all new to me on this FPIES journey but I have picked them up and added them to my daily load. Although I can't always say I am good about remembering I am carrying them. That gets tricky, when FPIES has stolen your confidence as a mom, to remember that it also have given you so much more that you didn't even know was really inside you.

Despite a diagnosis (still new), we haven't found our little man's baseline yet -- and now with first food trial (and fail) we are only further away from this. Little man has been trying to tell us something....he is limiting his formula intakes -- simply does not want to eat, is he telling me his gut is reacting to the trace proteins in the corn syrup solids and has been all along? Maybe....we need to listen more.

Be Still....hear the whisper of God....

Happy Father's Day!!

Ok, so I am running a little late on my Father's Day wishes! My husband is a great father and provider and teacher to our little guys, we will always be grateful for the extra time he gets to spend with them...being a Mr.Mom on his off-shift days! That is how he got to spend his Father's Day since I worked this weekend.

Samuel has been declining again, I'm assuming it is because of his reaction to corn 3days ago. But it reminds me of right before the hosptial stay- he is self limiting his formula and is now down to less than half of what he needs in a day to grow and gain weight. He simply does not even ask to eat and refuses when we try. He doesn't seem to be too bothered by it, or hungry....until tonight- he was particularly fussy most of the evening. So, I decided to give him some motrin to see if this would help. 4hours later, he emptied the contents of his stomach. Motrin, I had been starting to question his tolerance of -- clearly helps him with the pain but have been getting that gnawing feeling that there may be something in it that is still objecting to his system...now, I'm thinking I was right -- there must be corn in it. Dr.P at CHOP did say there is somewhere that compunds medications corn-free...we need to find out more about that because little man needs something to help him through the pain he experiences. If we adults had to experience that same pain- we would be asking for a morphine drip, I have no doubts.

This FPIES is a monster rollar coaster ride. One day you feel like you're prepared and ready for the challenges and the next it knocks you right over.

Faith, faith is a good thing to have...I have a strong faith and I do know without any doubts that God has given us our little man for a reason; and he has taught us so much already, and not just about FPIES but about instincts, patience, perserverance, love from brothers, devotioin of husbands (ie daddy), love and support of family and friends all around us, and about Faith.

Well, now he's up crying again....tickets please...