Langerhans Cell Histiocytosis (LCH) – Rare Disease Day 2012

Since today is Rare Disease Day, I decided to recap our experience with Langerhans Cell Histiocytosis (LCH). Langerhans cells are immune cells that are normally present in the skin and mucosa. LCH happens when immature Langerhans cells behave like cancer cells – proliferating, and sometimes travelling through the blood stream to end up in other…

Our Baby Got De-ported!

Today is the day we celebrate Elijah officially being a normal, healthy boy, finally free of all physical “ties” to modern medicine. He had his surgery this morning to have his mediport removed, and he did great!  We weren’t thrilled that he had to wait two hours past his scheduled time, but were forgiving because…

Wait Lifting

As I wait again in the family waiting area for a NICU surgery to wrap up, I’m reminded of the difficult lessons I’m learning. The first is patience. I’m learning that God has a timeline and I’m better off letting go of mine and embracing His. I have a matryoshka doll of “waits” bobbling in…

Daddy’s A What?!

Here I sit in my favorite (*gag*) waiting room, shut out of NICU once again for a surgery, bored, but grateful it’s not for Elijah. Two TVs are blaring sports and trash TV. Really, I couldn’t be less interested that you don’t know who the father is. Might as well use this time to write an…

The Elijah Cannon: Part 4, Treatment Begins

I was amazed by the size of the CHOA Egleston NICU, the quietness of it, the professionalism, and the hosptality. We could tell immediately that they had “it” figured out here. They understood that the experience was more than a baby in a bed – that each baby comes with a family, and each family…

The Elijah Cannon: Part 3, I Always Knew Polka Dots Were Trouble

After delivery, it took a while for me to get transferred to a recovery room. What a different experience it was to be offered even crackers and juice. I wasn’t terribly hungry, but I ate them slowly out of principle.  I felt like my blood sugar was low, or more perhaps like my blood was…