Wednesday, February 23, 2011

A Sincere Thank You

Normally, I know exactly how to begin a blog post.  At this very moment, I am at a loss for words...but in a good way.  A very special person along with his family and company, made a generous donation on Brendan's behalf to the FPIES United Family Fund of the Children's Hospital of Philadelphia.  Words cannot express how thankful I am.  It is the kindest of gestures and one our family will never forget. 

Maarten and his wife Ilse follow my blog and I am forever grateful.  I am also grateful to everyone else who reads my blog posts and supports my family through Brendan's FPIES journey.  Although the blog is my outlet, I often times wonder if I am sharing too much.  However, those who know me, understand that I wear my heart on my sleeve.  So, thank you everyone for continuing to support Brendan's cause and entertaining my blogging attempts!

Many thanks to you Maarten, your wife Ilse, and (ops) logix.  I wish I could shout from the rooftops how eternally grateful I am, but hopefully this blog post will reach more rooftops.  Thank you from the Incarnato Family!

Thursday, February 17, 2011

Our Song

Brendan had another appointment yesterday with his hematologist and it was a positive one!! Although his hemoglobin is still low, his hematocrit and iron levels are rising. What does this mean? Well, we can finally take a break from the iron infusions! Brendan is not scheduled for another one for four weeks!! We are testing the waters and seeing how his body does on it's own without the infusions. Fingers crossed he will maintain his levels and continue to improve.

As we checked in for the appointment, I realized something that made me both proud and sad at the same time. The receptionist handed me Brendan's hospital id bracelet and Brendan lifted his leg so I could place it on his ankle. When we headed back to the infusion room, Brendan willingly placed his hand in the nurse's so she could tape the warmers to his hands.  Once it was time to administer the iv, I nursed Brendan and watched him brace himself with his little legs against the arm of the infusion chair.  He never cries when the iv is placed.  This child is so resilient!

I realized what a special boy he is.  I hate FPIES for what it has cost my son and our family but I love the bond it has created.  It is both encouraging and scary to know that a tiny person keeps me going daily.  To know that his courage and bravery guides me through the toughest times.  If he can do it, so can I.  I have had such a tough time dealing with things lately.  It is difficult to express just what our family deals with.  But, seeing Brendan in that moment at the hospital, made me wake up.  I am hanging on, hoping for a miracle...looking forward to our New Jersey trip.  It seems that we FPIES moms have been sharing particular songs in which we relate our current experience or situation.  Here is mine.  You've Got the Love by Florence and the Machine.  The words depict the raw emotion and bond Brendan and I share. 

Sometimes I feel like throwing my hands up in the air

I know I can count on you
Sometimes I feel like saying "Lord I just don't care"
But you've got the love I need To see me through
Sometimes it seems that the going is just too rough
And things go wrong no matter what I do
Now and then it seems that life is just too much
But you've got the love I need to see me through
When food is gone you are my daily meal
When friends are gone I know my savior's love is real
Your love is real
You got the love, You got the love, oh you got the love...
Time after time I think "Oh Lord what's the use?"

Time after time I think it's just no good
Sooner or later in life, the things you love you lose
But you got the love I need to see me through.

Tuesday, February 1, 2011

Testing, Testing...Is This Thing On???

Brendan had another appointment today with the hematologist and during our conversation, the phrase "testing, testing...tap this thing on?" kept running through my mind.  It almost made me laugh.  I say almost because I cried instead, out of frustration.  Each and every doctor appointment feels like a performance but instead of applause, I wait for an answer....or heaven forbid, some validation.  Before every appointment, I research the latest medical obstacle that has been placed before us.  I learn the medical terminology and run to the appointment with all my findings in tow only to be disappointed. 

I sigh and begin my lengthy explanation.  Well, we stopped seeing the gastroenterologist because it was apparent we were getting nowhere.  They don't want to scope Brendan to establish a baseline because it is too invasive and comes with risks.  However, they recommended an inpatient three day food trial of an elemental formula via an NG feeding tube.  As an added bonus, they thought the trial would work best if I also stopped breastfeeding Brendan.  It sounds ridiculous when I say it out loud.  Obviously, a hospital stay and all the procedures that go along with it would be more invasive...not to mention traumatic.

During today's appointment, the doctor asked why certain blood tests had not been performed yet.  She then determined it was probably a result of Brendan's growth chart.  Once again, I explained, yes he is growing but only because I am nursing him 24/7.  I finally told the doctor that I would have to essentially wean him so he could fall into the failure to thrive category before anyone will take us seriously.  Otherwise, no one has been able to treat Brendan's FPIES but rather the secondary conditions that come about.  It is also apparent that even if the doctors understand the dangers of a toddler relying on a breast milk diet, no one is knocking on our door to help us.  By the way, I would not really stop nursing Brendan just to prove a point, but good grief, what is is going to take?

We are ever hopeful for some direction and measurable results from our NJ trip.  From what I understand, it will be informative but a battle to facilitate the collaborative efforts necessary to move beyond the test result phase...for various reasons.  Justin and I keep asking ourselves the question, is it worthwhile to take Brendan across the country to see a new doctor?  I can answer that question with a simple yes.  I would travel the ends of the earth even if I only learned one new piece of information that can potentially help my son.  Mental note...I should perform a sound check before the next performance.