irony.

on tuesday, january 28, i wrote this blog post about germs.  and as life would go, abigail woke up saturday morning with a respiratory virus.  fever.  coughing.  runny nose.  i spent the day praying, and hoping, and wishing that shilo wouldn't get it.
but, she did.  sunday morning was met with a fever and coughing and runny nose by both kids.  sunday night we made a trip to the e.r. because i couldn't get her temp to come down with meds.  a few hours later, all was fine again.  monday she was okay, and her fever came down with meds.  monday night she got wheezy. we started breathing treatments.  by tuesday morning, the treatments weren't changing how horrible her lungs sounded.  so i made a doctors appointment.
we left straight from the doctor's office to be admitted to the hospital with pneumonia.  her lungs sound awful. she hasn't needed oxygen at all, thankfully.  and they let us come home today since she isn't having fevers (which makes us believe that she is getting better).  we are still in the woods.  her lungs are still crackly and wheezy.
the virus.  human metapneumovirus.  hmv.  the same virus that nearly killed her two years ago.  new life goal, fine a cure for hmv.  or at very least an effective vaccination to prevent it...

please. please. please.  if you or your children are sick, stay home.

germs.

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.  

seizures.

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.

new labels.

the battles had been many that day.  i was out of patience.  my voice, my reactions, became louder, and angrier with each outburst.  this time i carried her up the steps as she flailed and screamed.  i put her in her room and shut the door.  i began to walk down the steps, sat down, and just started sobbing.
i never wanted to be a parent who yelled.  especially not as much as i do.  what had happened to me?  those first few years with her were so easy.  she was compliant.  she was loving.  and now it seems that more often than not, she is a screaming, crying, mess.  what did i do wrong?
a few minutes later i heard her door open.  she sat down next to me on the steps, and laid her head on my arm.  'sorry mama, for my fit and my bad attitude.'  that, that's the little girl i know.  the one who lives life full of passion.  the little girl who wants to be a doctor so she can help people.  the one who rushes to her sister's side as soon as anyone comes close to her, and has to know what the doctors are doing to her sister when we go to appointments.  she's in there.

in our world we know what constitutes a big deal.  we don't freak out too much.  we embrace and love quirky.  our girls are healthy.  they have disorders.  they have medical things that hang over our heads.  but, in a world full of bigger things, harder things, and scarier things, these things are very small.  it's important to know this, and to remember this.

but, also in our world, i was at a point where i felt completely at a loss for how to parent well.  the things that used to work, no longer did.  and after multiple months of battles with my big, i sent our family doctor an e-mail sharing what was going on.  she set up an appointment with a neuro-developmental doctor.  and we waited.
i researched, talked, and learned a lout about sensory integration disorder (or sensory processing disorder) in the meantime.  i filled out some paperwork through the center where big was getting speech therapy, and got a call back that she definitely met the criteria.  so i studied her more, read more, and tried to figure out her quirks.
she is a sensory seeker.  she needs to jump, chew, touch, squeeze, move, swing, anything that gives her senses lots of input.  so we have worked hard to do this.  things got better.  not great.  not perfect.  but better.
and tuesday, we saw the new doctor.  and i shared our concerns, our thoughts, our desire to help her, and us.  there was an eval before he came in to see us.  and then he sat, and listened to me for five minutes.  he was talking, looked at me, and said, 'ive been in the room for five minutes.  she hasn't stopped moving yet.  i don't doubt the sensory stuff.  the signs are there.  but, your daughter has adhd.
nothing changed from the moment before he said, until the moment after, with abigail.  she was the exact same kid.  she isn't harder now because she has a new label.  she isn't less capable of learning.  part of the reason we chose to home school her is because we knew if we sent her to kindergarten that this would come up, and we didn't want to medicate her.
but, there was that moment where things were confirmed.  and i felt a little sad for abigail.  because the label comes with a stigma.  she doesn't even know that this label exist yet. she definitely doesn't know she has this label. i hesitated to share it publicly because of the stigma.
i want to be an advocate though.  i want to advocate that my daughter's hard wiring in her brain being different does not make her defective.  it makes her creative.  energetic.  full of life.  and yes, sometimes it makes her defiant.  we know that we cannot allow the behavior issues to disrupt life everyday.  so we are implementing some changes.  we are seeking the help we need to know how to best parent her.  we are researching dietary and natural things that might help us along the way.  and, for now, we are foregoing any medicine.
we love our full of life big.  we love how much energy she brings to everything...even if papa says, 'taking a regular, smiling picture of her is like trying to take a picture of bigfoot.'

eeg and more on that mri.

so last wednesday shilo had her mri, with less than stellar results.  and this week she had a 48 hour eeg.  we had been waiting on those results as well as the mri from a year ago to compare to in hopes of learning a little more about the changes in her brain.

our (awesome, amazing, above and beyond) neurologist came to see us wednesday before discharge, and took my husband's cell phone number (since we are visiting family) so that she could call us today, the day after thanksgiving, with results of everything.
while i had no hope of that before she said she would, since it was a holiday weekend, as a parent with tons of possibilities rolling around in my head, i was beyond grateful that she said she had already planned to go in on friday, and would make it a priority.
she called at noon today.  she had everything,  aside from the mri to compare it to. as i suspected, shilo had lots of short episodes during sleep.  this means we will increase her seizure meds again and see if she doesn't start sleeping a little better.  the thing i was unsure of, perhaps her seizures were coming from the temporal lobe now, instead of the frontal lobe where it has always showed before.  but, the seizures did not change location in her brain.
so that mri.  let me start with what we know (which isn't much).  shilo's mri showed bilateral temporal lobe stenosis (scarring) and atrophy.  both of these things are really common in geriatric patients with alzheimer's.  they are also not unheard of in patients (generally teen and older)  having temporal lobe seizures, although they are almost always unilateral in this case.  but, in a two year old, well, it's just not really found.
had she been having temporal lobe seizures, there was a high possibility that she would have been recommended for a temporal lobe lobectomy.  and i don't know that, that's completely off the table.  but at this point we still have to figure out what's causing it.
so please keep praying with us for answers, and that there would be no more changes.  brains are pretty important.  and your temporal lobe takes part in lots of functions.  the idea of her little personality changing in any way is very sad.  we really like her, just the way she is.

our sweet snuggle monkey.

and, test.

so last weeks appointments are over.  abigail is now officially able to eat tree nuts and peanuts again.  matter of fact, we have nothing we have to worry about food wise.  it's weird, and i still carry the epi-pens with me.  someday i'm sure i'll be able to let go of that, but they have been a part of our 'leaving the house bag' for around four years now.

shilo's mri results were less than stellar.  we are still awaiting all the details that will be emerging over the next few weeks before we share anything big.  her neurologist is waiting on a copy of the films from her mri a year ago to compare.  she is also waiting on the results of the 48 hour eeg that will take place from tomorrow until wednesday.  while i am always hopeful they will capture something, this time it's of dire importance to figure out what to do about her abnormal mri.  so please, please, pray that they get good, clear information so we can know where to go from here.

i'll leave you with some pictures from abigail and i's date today so that she could have some mama time before i'm gone for a couple of days.  and a few of little being her silly self.

'papa, will you take a picture of our snuggles?'

snowman cookie.

drinking tea.

building with jenga blocks.

jenga blocks become props for 'little house on the prarie' play.

breaking up stir sticks for the ingalls to have a 'feast.'

'take a picture of me with the cabin we built.'

i love these hands.

'let's pretend to sleep, but don't close your eyes.'

'a perfect animated story telling face.  this was not posed.'

reading some comics.

reading a book she found.

'someone left their bookmarker in it.'

home, helping me ice our carrott cake.

how shilo helps in the kitchen.

we make tasty cream cheese icing.  also, check out the little one adoring the big in the background.

even this girl likes it.

a little night before poem.

'twas the night before appointments and all through the house, 

the parents could be seen, scurrying about
the clothes were all laid out for the morning ahead,

in hopes that they could all have a few extra minutes, to rest in bed.

the children were nestled early in their bed,

because early mornings make for grumpy heads.
papa was busy filling cars up with gas,
while mama made food to save them some cash.

papa was preparing to take big, one way,
an appointment that could make, for a great day.
a follow up from last week, nut challenge 2,

that could give us clearance to feed her cashew.

mama packing up medicine and food,
to take little in hopes of hearing something good.
her third mri, something we've gotten used to,
hours in a small room trying to entertain with peek-a-boo.

but alas, things were done, packed, ready to go,
parents went to bed, lights turned down low.
papa feel asleep, while mama laid there, alone
unable to dream, fear of the unknown.