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). 

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???