Argh, the Dreams, Yay, the Boy.

My over-active imagination never seems to miss an appointment. I tire of writing about this, now that Elijah’s chemo treatment is 2 years behind us, but apparently I need to work it out some more, or there’s some reason I’m not supposed to “get over it.” Last night, as I was trying to sleep, I…

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…

Teeth Thing

I think my Motherbear persistence is finally steering us toward some results for Elijah’s teeth. As I’ve said before, his bottom two front “teeth” have been a mystery. He lost them in the NICU, but there has been something protruding from his gums. When his first top tooth was coming in, it looked damaged from the start. We saw the dentist, but were informed that we had to wait until the tooth had fully come in to fix it.

Follow-Up CT Today (Updated)

UPDATE AT BOTTOM Today Elijah will have a CT Scan to follow up on some lesions in his lungs. They are probably scar tissue, but the doc is keeping an eye on them. Here is what we are looking at. Imagine you sliced the top of his body off at the shoulders and then looked…

It’s best to starve your PET

We rocked. We walked. We bounced. A boy knows what he wants. He tantrumed with all his might. I briefly calmed him with some warm water in a bottle. He doesn’t drink out of bottles, but he was happy to chew for a moment. I tried some TV. I walked some more, praying and praying he’d fall asleep. Finally, he did sleep, but it was only long enough for me to get dressed, sneak some food and wake him up to go.

Three, Two, One, Vinblastine

Yesterday (Friday), Elijah *finally* had his last planned dose of chemo. In three weeks, he will have a full-body PET scan, and if it is at least as good-looking as his previous scan, then he will go to an observation schedule of check-ups every month, then every three months, then 6 months, then annually. He…

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…

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!…

I’ll Be in the Powder Room

He’s crawling! I would probably call it official since Friday. I’m in for it now. They can officially take off in three different directions. Prior to Friday, Elijah was “migrating.” By lunging and turning and sitting, he would get around a little bit. His last chemo visit went well. His blood counts were basically normal…