Tuesday, January 28, 2014


i'm hoping this post goes viral.  that's a little germ joke for you.  but, for a lot of parents, with children with medical conditions, germs aren't funny.  they're scarier than seizures, and g-tubes, and surgeries combined. and for lots of us, we get really tired of being seen as neurotic, and overprotective.  so i'm going to try to help those of you without these fears to understand.
two years ago our family was devastated by germs.  one little virus.  a virus, that for most people, is a cold. no fever.  no being laid up in bed.  just coughing and a runny nose.  shilo picked up hmv.  and it all but killed her.  literally.  as a result of it, she now can't eat by mouth.  she is delayed from spending so much time sedated, and even longer coming off of narcotics.  but none of this is the scariest part.
things like rsv and hmv, both respiratory viruses, when gotten by healthy children, and adults are a cold.  and unbeknownst to most people, can shed live virus for up to three weeks.  that's right.  three weeks.  so if you still have that cough two weeks later, but think it's probably not a big deal, it likely is for some people.
there are different levels of medically fragile-similar to terrorist threats.  two years ago, when shilo got sick, she was in the red zone.  her heart defect made it serious if she were to pick anything up.  ironically, we didn't leave the house with her.  her big sister brought it home.  last year, neither of the girls left the house during cold and flu season.  jason and i did everything separate, one person home with the kids, the other grocery shopping, running errands, and even going to church.  shilo was an orange last year due to her continued pulmonary hypertension.
and this year, we are yellow.  the combination of Down syndrome, and the permanent lung damage, from the virus she got before, means that if she gets a respiratory virus, we are at risk for pneumonia, hospitalization, and even possible intubation again.
i'm still recovering emotionally from our stay two years ago.  i'm neither being dramatic, nor dishonest when i tell you that another hospital stay like that, and i would need anxiety meds to get through it.  it was hard.  shilo has all sorts of physical scars from picc lines, heart surgery, chest tubes, and even a line put directly into her bone when she coded because they couldn't get an i.v.  i, on the other hand have scars that no one sees.
but, in all honesty, this isn't just about my children.  when you are at the store, and you are sick, you touch things that i have to touch.  and so does the mother who's child is still in the red zone.  your sick germs are shared through things like grocery carts, door handles, touching food and putting it back, and so on and so forth.  and if you take your sick child, well, kids are much better at sharing germs than adults even.
when you choose to go places, or take your children places, despite sickness, you are putting families at risk, and you likely don't even realize it.  i know that it's impossible to avoid all germs.  i know that sometimes you are going to go somewhere, get home, and a half hour later your kids going to spike a fever out of nowhere.  i'm a mom.  i've experienced those things.
but, as the mother of a child who is still medically fragile, please be considerate.  if one of your kids is sick, and the other seems fine, remember that illness can lurk silently inside, still being contagious, well before symptoms.  if you like touching babies in stores, at church, or anywhere, please ask first.  i get so tired of the back up and repulsive looks when i ask people not to touch my kid.  and if you are sick, stay home.  if your child has a snotty nose, stay home.  don't send children back to school, or take them to ballet, or story time, or even the store, until they have been fever free for 24 hours.  give that antibiotic the full 48 hours to work before you are around other people.
i know being stuck at home stinks.  believe me, i spent four months stuck in my house last year.  it sucks. but, i promise you that, that, was way less horrible than being stuck in the hospital for three months.  it's truly selfish to think that your few days of stir crazy trump the health of those that are vulnerable.

what a simple 'cold' did to my little.  

Wednesday, January 22, 2014


little has been rocking out, seizure free, for multiple months now.  and, like always, i have been holding my breath as a result.  waiting.  waiting.  and, it happened.  i think at this point it's just something we've accepted as part of our life cycle.  seizures are controlled.  shilo has seizures.  meds are increased or changed.  start over again.
yesterday morning, shilo looked like this.

unable to hold up her head.  eyes are droopy.  a tell tale sign that sometime in the night she had seizures.  sometimes they continue through the morning and are accompanied with vomiting.  sometimes we just know she had them, but don't actually see any more.  yesterday we didn't see any more.  but, her head stays like this, and her eyes often drift in different directions until she looks like this for a while.

when she wakes up, she is never quite fully herself, but she can hold her head up right, and her eyes aren't going in two different directions.  naps do that for me too.  it takes her about twenty four hours to get back to herself again.  but, that doesn't mean our afternoon wasn't full of fun things.

 because seizures are best followed up by eating cheese puffs, and smearing them in your hair.