How Far We Have Come!

I have been horrible about blogging lately!  Between living life and adjusting to the new schedule dictated by my husband's new job (he works 7 pm to 5 am - not fun when you have an infant who doesn't sleep well at night) I have simply been a little nuts trying to keep up with everything that has been going on.  Things have DRASTICALLY improved for us.  While we are still trying to get our new insurance company (who has to cover B's formula by law) to help us with the tremendous cost of Nutramigen AA, there is hope in site that we will receive some relief in this area soon (it looks like it will take around another month before we finally get the approval we need).  Most importantly, Braxton has moved from simply surviving to "thriving."  When reviewing his growth charts, it becomes clear.  At one point, he had fallen off the chart and was in only the 1.02% (the chart showed that his growth actually stopped being linear and a break occurred with a brand new line starting below the prior one).  Today, I am pleased to share that he is in over the 20th percentile.  He now has a food that he can eat (other than his Nutramigen AA) - Peaches!  He loves his peaches.  He eats two jars a day and cries for more!  We are planning to begin a trial with carrots on Friday.  He is doing great in his new school and he LOVES it there!  The transition to a new caregiver provided a lot of freedom for my family and has had a tremendously positive impact on B! He has started crawling and has said his first word, "Dada."  It is hard to believe that not that long ago he was battling for medical stability and we were battling for medical care...  It is hard to believe that not that long ago he couldn't even tolerate elemental formula.  I am so, so, so, soooo grateful that we are not there anymore.  I am so glad that our families struggles have changed to more trivial worries like how to establish a "bed-time" and how to adjust to mom and dad working completely different schedules. We are so blessed!

On a different note, it looks like I have found a senator who would like to sponsor the bill for mandatory coverage of amino-acid formula in SC by private insurers.  I will keep you guys posted on this once the new session gets going.  Thank you to so many of you for all of your prayers, love and support.  I have been so touched by how many wonderful friends and family members we have who are willing to rally behind us (and carry us when we fall down). 

Pay It Forward

FPIES can be a very hard thing to deal with...  There is a lot of uncertainty as a parent (particularly a new parent) as to what to do.  There is also a lack of support and information within most of the medical community.  Add on top of all of this a lack of understanding from friends and family that must be overcome with education provided by the family with the FPIES child (I understand why this is - FPIES kids look so healthy on the outside that until you witness an "episode" first-hand it is hard to believe they are sick) and it leads to anenormous amount of pressure felt by the family diagnosed with FPIES (yes, when the child is diagnosed the whole family bears the weight).  These pressures often lead to a sense of isolation.  Not many others really understand what the family is going through...  For my family, this weight has been easier to bear because of some amazing women who care.

FPIES has taught me more about community and compassion in the last 4 months than I learned in the 28 years of life I experienced prior to having an FPIES child.  Thanks to the internet, there is an entire online community of FPIES mommies who provide information, support and resources to one another.  These women have become my heroes.  There is no telling how many trips to the emergency room we would have experienced by now were it not for these women, and no telling how many times Braxton would have gone through shock.  There is also no telling how many days I could not have made it through without these women.  They have prayed for us, cried with us, and been there to give us advice.  They have never judged me nor laughed at the often ill-informed questions I have had.  One of them even sought me out when I had no clue the severity of the situation we were dealing with.  Had she not mentally prepared me for what was coming, I don't know if we would have made it through (Thank you, Joy)!  She even helped us to get our appointment in New Jersey.  The amazing part is, she did all of this while she was fighting for her FPIES child every day.  Another mom, Fallon, has provided me with tons of information on how my family can get assistance with the enormous cost of Braxton's formula.  She also has pioneered efforts to start the FPIES United Family Fund so more research can be done to help find a cure for these children.  These are only two examples of the many amazing women who have stepped-in to help my family;  Women I have never even met... These women helped me to stop being afraid to speak-up for my child and have walked me with me through some of the darkest moments of my life.  They have been our lifeline.

After finally getting an appointment in New Jersey, I asked one of these moms how I could be of service to her family.  After all, she has done so much for mine...  Her reply, "...share your story, raise awareness, help another mom that will come along and read your blog and posts... pay it forward!"  This is the reason I have started to blog: to keep the network of support going; To attempt to repay some of the kindness that has been given to my family.  I can only hope that by sharing my family's experiences, I can help another mom who is searching for answers or another mom who is in desparate need of understanding and support as I have often been during this journey.

Thank you so much to the many FPIES mommies who have taken the time to share your experiences, research, advice, prayers and support with me.  You are some of the most amazing women in the world!

FPIES, This Blog, & Where We Are Now

My son, Braxton, is 5 months old.  He is one of the happiest babies I have ever met.  He loves to laugh and play.  He has a chronic condition called Food Protein Enterocolitis Syndrome (FPIES).  FPIES has ruled our lives since shortly after Braxton was born.  Vomit, scary diapers that look like they were produced by an alien, and sleepless nights have become a way of life for our family.  The hardest part of Braxton's condition is the lack of support we have received from many within the medical community.  To date, I have fought for every bit of medical care my son has received.  That fight, along with the support I have received from other mothers who are involved in online communities who share their own stories in blogs, are the reasons I have created this blog. 

Although Braxton is only 5 months old, a LOT has happened in those 5 months.  If I tried to put it all in one post, it would be a short novel.  For this reason, I will do posts designed to catch-up what we have gone through so far over the next few weeks.  For now, I will give you enough of a summary to let you know where Braxton is in his FPIES fight to-date:

Braxton cannot tolerate any milk or soy formula (even the expensive hypo-allergenic kind that you can buy at the store).  Instead, he has to be on a very expensive kind of formula (not covered by insurance, but that is another post in and of itself) called elemental formula.  Braxton has not tolerated any elemental formula well.  He thrived on Neocate for about 6 weeks before he developed chronic diarrhea and vomiting.  Our medical team decided to switch him to Elecare.  After two weeks on Elecare, he developed severe vomiting and diarrhea, and had large amounts of blood in his stool.  He is now on Nutramigen AA.  He has held-up alright on Nutramigen AA, but still vomits (large quantities) every single day.  We know he does not fully tolerate this formula, but there are no other alternatives available for us to feed him.  He is not gaining in weight or height as he should (around 5th percentile in both).  No one on our medical team has offered any solution to-date.

We are currently counting down the days until an emergency appointment (actually set yesterday) with a speciailist at the Pediatric Center for Rare and Complex Disease in New Jersey.  Although it is a great expense, my family will be traveling to NJ from SC within the next two weeks.  We are hoping to find some answers there...

This is where our family is to-date.  I sincerely hope that this blog can provide information to other families who may be seeking it.  I also hope that it can serve as another vehicle to break the feeling of isolation FPIES can create for families experiencing the same fight.  Finally, I hope this blog will assist in  raising awareness of this disorder. Many of us desparately need the medical community to support us, but find that there is no support locally available.  Only through increased awareness and research, will we ever be able to help the children who fight this battle daily.