One Precious Year

Snuggled in for the night (and no, that's not barf under her arm, it's an old towel with paint on it, I guess all the blankets must have been in the wash when Devon put her to bed last night).

So, now for the non-statistical review:

Jordan just turned one, and is still a newborn developmentally. She doesn't sit up, roll over, hold up her head, smile appropriately, reach for toys, babble, or track with her eyes (possible cortical vision impairment).

Her head circumference is far too small, and her MRIs show cerebral atrophy. Her PET scans show newborn-like brain function. Her EEG is "abnormally" normal, meaning that it's very chaotic, but as of now, for some (surprising) reason, she's not having seizures. She does have some myoclonic seizures that do not show up on her EEG & are considered benign. She had Infantile Spasms (and despite the relatively gentle sounding name, these are devastating, brain damaging seizures), but 48 days of ACTH stopped them (knock on wood they don't come back).

She has been tube fed since she was 3 months old, and is very orally defensive -- she takes nothing by mouth, including fingers. She has an incredible gag reflex, and serious reflux, for which she takes Zantac.

We have done a tremendous amount of testing over the last year, and everything has come back normal. If you believed the lab tests, you'd think she was perfectly healthy.

At this point none of our doctors believe that she will ever develop beyond "newborn." Some warn that she may have a drastically shortened life span, due to pneumonia, aspiriation, or a severe seizure, but others say she could be with us for years just like she is.

Due to the extremely extensive genetic, metabolic, mitochondrial, infectious, and neurological disease testing, (all "normal") most doctors believe that she doesn't have a "disease," but that somehow she sustained a one-time "insult" to her brain while she was developing, and that genetics have nothing to do with it.* There are still some docs who think her condition might be metabolic/genetic/mitochondrial, but with each normal test result, that becomes less likely. Even if they couldn't narrow it down to one specific illness, they would expect to see SOMETHING that is not normal in her body chemistry & genes. But with a brain insult, her body chemistry could be normal, but her brain wouldn't work right.

She turned 1 on 30 December, and for some reason I wasn't nearly as sad as I thought I would be. We're starting to accept that we will never know why Jordan is like this, and that's okay. She's just Jordan. She is cute, and warm, and snuggly, and we love her like crazy! Avery is incredibly loving & compassionate with her, even though she doesn't quite understand why Jordan is different from other babies she knows.

We're at the point in our lives, after one hellova year, that we must make a place for Jordan in our family, and not let her be the center & focal point of our family (as she has been). We could be in for the long haul here -- and that's okay. We just have to find our new "normal" as a family.

*According to one geneticist "sh*^ happens". There was NOTHING in my pregnancy to suggest even the slightest problem or "insult." Of course I will always feel responsible, but we have no way to know what "it" possibly could have been, & the doctors always tell me that it was out of my control and not to worry about it -- easier said than done!