Wednesday, August 31, 2011

Labor of Love

I have been working with seven other amazing FPIES moms across the nation and today we are launching The FPIES Foundation!  We are so proud to offer interactive support resources for FPIES families everywhere.  We are also reaching out to medical professionals and receiving an amazingly supportive response.  This is an exciting time because we finally feel like FPIES does not hold all the cards. 

Do I need to be adding one more thing to my already overflowing plate?  No, but the amount of guilt an FPIES parent experiences is overwhelming.  There is always the second guessing and regardless of the number of times we are told we are doing all we can, it never eases the guilt.  I will never be at peace with the fact that I cannot fix my son.  But, what I can do is advocate for his present and future medical needs.  Taking on this huge project has not been easy but definitely worthwhile.  Justin and the kids have been so supportive and I am constantly amazed by the maturity of my children.  My oldest son Cameron has made me proud as he has been cheering me on this whole time.  Cameron, I know you read this blog and I just want you to know that even in the hustle and bustle of our everyday lives, not a moment goes by that I don't think about all four of my children.  After all, you were my first little man!

So, I hope our family and friends can celebrate and be proud with us...this is our labor of love.

Wednesday, August 3, 2011

The Ebb and Flow

I have been doing a lot of reflecting lately...mostly about the ebb and flow of life, relationships, and of course life and relationships within the world of FPIES.  We have had a pretty good summer so far.  I have limited the number of Brendan's doctor appointments and the kids and I have been lazying around for the most part.  Well, let me rephrase that.  I have been lazying around as much as a mom of four kids can.  We have a month left of summer vacation before we hit the ground running again with school activities.  I'm determined to somehow find a balance between the needs of my family and Brendan's condition.  I hope to find some time to volunteer in my school age children's classrooms this year.  My goal is to get back some of that pre-FPIES time.  It's possible right?

I am looking around at some amazing FPIES moms I have befriended along the way, and it seems like there is most definitely "the ebb and flow" of FPIES.  It is like a domino effect with our children.  One child experiences a complication or reaction and all the others follow suit.  What is the link between our children's illness?  How many countless hours of research and collaboration between desperate mothers must we endure?  I'll save that for another post. 

Back to Brendan...he has been in good spirits for the most part.  He has his days when he is cranky and/or tired and will take three to four hour naps.  This is partially due to his anemia.  Yes, it's back.  It took almost six months of iv iron therapy to improve his levels and only a month and a half for his levels to decline again.  We may have to proceed with iv iron again but for now, we are attempting to incorporate more iron in his diet by trialing beef.  I say "attempting" because he has had three reactions so far this summer which required gut rest.  So, we are moving at a snail's pace.  We tried introducing carrots and after four weeks, it was a fail.  We also thought corn was a safe food but apparently it is only safe in processed/broken down form.  He reacted to corn kernels last week.  So, I am again researching and reviewing Brendan's medical records for a clue.  Should we entertain the idea of a scope now?  I want to consider a scope because we have confirmed he has chronic inflammation even between reaction episodes.  Is this chronic inflammation preventing the absorption of iron?  Brendan is still nursed, which is one good form of "bioavailable" iron, even in small amounts.  He also eats two to three potatoes a day, which is another good source of "bioavailable" iron because of the combination of iron and vitamin C in the potato.  So, what gives?  I know he is on a limited diet but he should be absorbing what he is consuming.  Even with iv iron therapy, his hemoglobin and hematocrit levels went up but his ferritin levels (iron stores) never increased.  Brendan's ferritin ranges have been between 2 and 4...consistently low.  I think it is safe to say his body is not absorbing iron efficiently in order to replenish his iron stores.  What does that mean?  Reactions are never good but they are especially harmful with Brendan's persistent anemia.  It doesn't take much for a reaction to rob Brendan of available iron.  For now, we are proceeding cautiously with the monitoring of his anemia.

I have come to the realization that FPIES will be a big part of Brendan's life and in turn, our family life indefinitely.  I think I have come to a place where I don't ask why this is happening, or how am I supposed to make this okay for my son, my family, myself.  I have spoken of acceptance and faith before, but I feel it now more than ever.  No one can heal my child right now.  But, I can choose to enjoy my family and embrace the uniqueness of our situation.  I can find comfort in the support of those who have accepted or try to understand our situation for what it is.  It's not always pretty but it's who we are.  Most families have enough challenges in life.  Throw in a child with a chronic illness and see what you get.  Some days are good, some days are bad...it is the ebb and flow of FPIES after all.