Monday, May 16, 2011

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). 

Monday, April 25, 2011

Test Results & Lots of Change!

It has been a really long time since I have sat down and written a post.  There are a few reasons for this - mostly, because our family has been going through lots of changes.  My husband has started a new job.  Today is his first day starting his assigned 7 pm to 3 am shift.  This job is such a blessing for our family and provides us with phenomenal benefits, but I had a little bit of trouble knowing that he would be away from me at night - especially when we have a 7 month old that is up 3-4 times every night.  I am so grateful for this opportunity for our family, though and I know that God will take care of me and our family through this transition.  Braxton is really doing great these days.  He is gaining weight (he is now in the 10th - 20th %), he is growing in height, and he is hardly throwing-up at all anymore.  He hasn't had scary diapers for weeks either! 

For several reasons, we recently became aware that we needed to change caregivers and made the decision to start Braxton in a pre-school.  He LOVES it there!  The school is awesome and his teachers met with us several times to discuss a plan to keep him safe from accidental exposure to foods (since we don't have anything "safe" except elemental formula).  Nutramigen AA has been working great for him and we are delighted to see Braxton really be happy and developing well.  He can now sit unsupported for long periods of time (he loves to play on the floor with his toys).  He is trying to learn to crawl, but has not quite mastered it yet.  Another positive change:  My husband's new job provided us with immediate access to incredible benefits.  Because the company is headquartered in Texas and Texas has legislation in place requiring private insurers to cover elemental formula, we will have up to 80% of the cost covered (we have to wait for the letter from our physician to be processed before we can begin to use this benefit).  This will not make me stop pushing to get help for the many families in our state who struggle with the enormous cost of this formula, however.  Unfortunately, I have been informed that there is no possible way to get the bill introduced until the next Senate session, so I am waiting for a few months to really begin drumming-up support again.

On a different note, we got our test results back from the Pediatric Center for Rare and Complex Disease in New Jersey.  They conducted in vitro blood tests which exposed Braxton's blood to specific food proteins to determine exactly what goes on at a cellular level with Braxton specifically.  We do not have the full interpretation of his results yet, but he showed significant reactivity to milk, soy, and gliadin - so we now know that he needs to pretty-much be milk-free, soy-free, rice-free and gluten-free as well.  This isn't helpful immediately since we haven't started food trials yet, but it will help us immensely once we begin food trials.  We have some direction - even if it is what NOT to try.  We also have a very powerful tool - Braxton's blood tests show that the FPIES diagnosis is accurate.  Hopefully, this will assist us and improve his access to care locally, as prior to this most of his doctors were unsure of what exactly was going on with him.  So, this is where we are to-date.  Lots and lots of changes, but many of them are so positive!  I will be posting more going forward.  I hope everyone had a great Easter!  Braxton had a wonderful Easter and received a basket with some cute little baby toys in it.  Who wouldn't want to get toys instead of candy on Easter???

Tuesday, April 5, 2011

Thank You, God...

Thank you, God for giving my family the special opportunity to have such a special little boy.  Thank you, God for giving my family the grace, perserverance, and strength to jump the hurdles this disorder can put along life's path.  Thank you, God for wonderful days when Braxton smiles and plays all day.  Thank you, God for allowing Braxton to continue to heal and helping him to thrive on his new formula.  Thank you, God for allowing us to see the miracle inside of our little boy;  For letting us witness how sweet and positive his spirit is even on days when he doesn't feel well.  Thank you, God for giving me the courage to speak up for my child and for others who haven't found a voice yet, when it is needed.  Thank you, God for sending our family down a path where we could find support and knowledge from others who have overcome the same obstacles we are struggling with.  Thank you, God for giving us the opportunity to turn something that could be so negative into something positive.  Thank you, God for giving our family the opportunity to help other families.  Please help us to continue to utilize our special talents and skills to advocate for others and to advance Your will.  Please give us discernment so that we can accomplish the goals that you have set for us.  Thank you, God for so many blessings. 

Monday, April 4, 2011

Finding Our Way to Normal

Braxton is finally doing so much better.  For the past two nights in a row, he has slept 6+ hours without interruption.  He is eating like crazy - I hope this is due to a growth spurt.  We went to church yesterday and for once I didn't cry through the entire service about FPIES and I didn't worry about him too much.  It was wonderful!  There is a gray cloud looming over my head, though.  I love these times - Times when I can play with him and watch him laugh... times when I really get to enjoy the unique personality of my little baby.  I know these times will go by in the blink of an eye.  I also know that I need to email Dr. J to find out what other brand of enzyme replacement and what brand of probiotic we should be using.  I am avoiding doing this task like the plague!  When Braxton only gets formula, we get to pretend like we have a normal life.  We can go places, we can do things, he feels great... everything is good.  Everytime we deviate from a strictly elemental formula diet with no medications, life gets bad.  No one in our house sleeps, there is constant crying, and I spend every waking moment worried about what is really going on inside of my little boy.  I know we can't go on like this forever - on a diet consisting stricly of elemental formula.  Three different people made comments about how Braxton is half the size of their 6 month old child (and at least in one case, I saw with my own eyes that this is true).  I know the time is close when he is going to have to start to have some solids.   I know that he needs an enzyme replacement to help him pass foods... I know that he needs a probiotic for the same reason - BUT - we just found our way to normal again.  I want to stay here in this safe place forever.  For tonight, I am going to enjoy normal - Tomorrow, I will worry about the rest and I will write that email I have been dreading to hear a response to...  Today, I am grateful for the many blessings God has given our family. This weekend and tonight have definitely been blessings!

Friday, April 1, 2011


I know I promised some additional resources to help with the formula coverage fight, but I will not be posting them this evening.  This week has been hard on our family.  We are so blessed and Braxton is growing like crazy, but he is also teething and seems to still be getting over the issues he had with the Creon.  I have not slept more than 2.5 hours total (no more than 60 minutes consecutively) in a week.  I am exhausted!  So exhausted that I am trying to develop strategies to deal with Braxton's issues...  I will post more tomorrow.  I hope everyone has a great evening!  Thank God it's Friday!

Thursday, March 31, 2011

Taking Lemons & Making Lemonade!

In the last four months, FPIES has really taught me a lot.  More than anything, it has taught me what an amazing little boy God blessed me with.  It has also taught me a lot about the fabric God wove me out of...  I am more determined, tenacious, and courageous than I ever thought.  If someone told me that one day I would be unafraid to put my little family (including new baby) on a plane and fly accross the country to see a doctor, I would have thought they were crazy.  If you would have told me that I could go for days at a time without sleeping and still take care of my family, I would have thought you were lying...  I have always been a person who likes clearly defined procedures and rules and going outside of what a doctor or authority figure had to say was completely out of character for me - at least I thought it was.  Like I said, I have learned a lot about what I am made of.  What I have learned most recently is that God really did make us where we can find purpose and blessings even in the moments that feel the darkest - if we are seeking to.  I know that sounds crazy, but I have really found this to be true.  FPIES is not something I would wish on any chid or any family.  It is very hard to deal with... but there are so many positive things that have come from it because we have sought to find a positive way to deal with all of this.  I now spend a part of every day of my life really doing things aimed at making a real difference in the lives of others.  From blogging, to trying to get legislation in place to help the many families that can't afford formula, to trying to raise funds for the FPIES United Family Fund, I fill the few free moments that I have when I can't spend with Braxton with trying to make a difference.  This is the biggest blessing that FPIES has given me.  It has given me purpose outside of my family and job.  It has helped me find my voice and has helped me start to become a voice for others.  I may not accomplish all of my goals, but I feel empowered.  I feel like I am seeking the path that God was grooming me and my family for all along.  Today, I am grateful to be making lemonade out of these lemons - even though Braxton can't drink the lemonade!   

Tuesday, March 29, 2011

Milk Formula, Again?

Not really...  but it feels that way.  I remember coming home with my newborn baby.  I was so exhausted.  He cried, and cried, and cried some more - Then, on occasion he would take a breath and he would throw-up or have major gas.  I look back and have no idea how I made it through the first six weeks of his life.  He never slept - I am not kidding, I mean NEVER slept.  When he did finally nod-off it never lasted for more than 15-20 minutes and he was screaming all over again.  For the last day and a half, we have been back to that scary dark place again.  Braxton has been screaming his head off - constant crying and lots of gas.  He wakes up every 2 hours (okay, so it isn't quite as bad as it used to be) screaming.  He is throwing up more and that rash I hoped I would never see again has re-emerged on his beautiful little face.  He has the same cough that he used to have - a dry cough that you can't quite put your finger on.  I know what this means:  it's the Creon.  I had such high hopes!  We are officially pausing the Creon trial.  Maybe I gave him too much (a "sprinkle" to me may be a "dash" to someone else).  Maybe it is just too soon to try it...  I am second-guessing myself as I type: Maybe I am crazy?  No, I know what this looks like - we lived with him like this for so long!  I hate FPIES!  What does this mean for when we are supposed to start thinking about adding a probiotic?!  I am so tired of him failing everything!  He has done well for 5 or 6 days, and now this?!   Well, it's not the end of the world.  We will move forward and continue to try.  I can't wait to get the blood results back from PCRCD - maybe we will have more information at that point.   For now, I will look on the bright side.  He has gained weight and length since we got back from NJ - like a lot of inches and a significant amount of weight.  He is now officially in 6-9 month clothes and he is officially 6 months old (he was in a 0-3 until he was 5 months old!).  Life is good and we are blessed, but for now - no more Creon.