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…
Tag: God
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…
Mathmagic
Ian begged me all week to make lemonade. Finally, I bought two bags of lemons and started the project. Our favorite recipe involves a cup of water per lemon and a quarter cup of sugar per lemon, a lot of peeling or zesting, soaking the peels/zest in the sugar, dissolving it in boiled water, removing…
Bead Dazzled
We had a colorful week. The boys got to enjoy an overnight dusting of snow, early last week. I slammed their clothes on and sent them out the back door, before the day warmed. Ian paused to remark that his fluffy sweater felt like a life jacket, and then did a remarkable, cartoonish impersonation of an emergency flotation vest blasting full of air and then he bobbed around a bit. They ran and kicked and rolled in the barely-snowy yard. Ian wanted to make a snow man. I put some exam gloves on over my fingerless gloves to help roll a few snow balls before getting breakfast started. Ian came in and wanted some exam gloves too. I buried his fists into a pair, and as he struggled to get his fingers into the right holes, he wailed, “I don’t have as many fingers as these have!” I know the feeling, little buddy.
The Fun “1”
Our baby boy has graduated into toddlerhood. Elijah had his first birthday last Friday. Brian went to work for the first time that week, since we had been iced in. Most places were closed. People were ice skating and skiing on the streets of downtown Atlanta. The Tuesday before was supposed to have been Elijah’s…
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The Lord is my Shepherd. He has provided.I bask in the wholeness of my family, drinking up my sons and finding in each a unique and intoxicating bouquet. Again I smell, kiss, envelop the child for whom I’ve trembled. He grows so strong, snuggled in his garments, the tightly-knitted prayers of a multitude. His laughter…
Ooooh. Ahhhhh. Yeah, You Might Want to Just Ignore This One.
I think I might dance and giggle. OF COURSE there was a Facebook app that lists a history of my status updates, and now I have brought them here, only slightly edited. To overwhelm your mind. To keep them as mine. ALL MINE. Woah-ha-ha-haaa! Amy If you’re happy and you owe it, hug a Vet!…
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…
Pleasantly Bored
Okay, so how many different ways can I document my daily routine? Got up. Pumped. Got dressed. Ate. Stuffed frozen milk in a cooler. Got kisses from the boys. Said goodbye. Said goodbye some more. More kisses. Said goodbye one more time. Drove to hospital. Pumped. Woke up munchkin at 11:45. Changed diaper. Detangled wires….
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…
S.A.H.M. Hill 