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). 

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!