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.

The Kiss.

This image has been circulating my facebook news feed for a few hours.  It's the image of the Pope kissing a man.  Some of the headlines have said things like, 'Pope kisses man plagued with boils' and 'Pope embraces man with skin condition' and on and on.

He is being praised for embracing this severely disfigured man.  What if he had gotten whatever this man has?  I've seen comments about how beautiful it is that he is kissing someone who looks so repulsive. I've seen comments hoping that now this man can get the medical treatment he needs to get rid of whatever that is all over him.




This image is one of me kissing my big.  I do it lots and lots of times.  Every day.  I also pray for her.  I touch her without worrying about catching anything.  It just doesn't seem like that big of a deal right.  Nothing like what the Pope did by touching this man.
This man, he has Neurofibromatosis 1. It's the exact same genetic disorder that my daughter has.  No, she is not covered in dermal fibromas like this man.  Yet.  But, should that day come, I will not hesitate to embrace her, kiss her on the head, and pray for her.

the sound of joy.

after being stuck in construction traffic for over an hour we stopped for dinner.  the girls were restless from sitting in their seats for so long.  jason and i were tired from a weekend away from home and our own bed.  we sat at the table working hard to not let our exhaustion and frustrations spill over into our parenting.  i colored pictures with abigail, and we signed with shilo while she nibbled on crackers (and spit them back out).  at the end of the meal, i held shilo on my lap, and abigail tickled her, and did her usual silly antics to try to make her laugh.  jason and i were both smiling and enjoying watching our girls interact.
but all the time we were sitting there, i could feel it.  i'm mostly used to stares at this point.  our family causes people to do double takes, likely because they are just trying to figure it out.  adoption?  two different dads?  what's going on here?  and does that little one have Down syndrome?  i get it.  we stick out a bit.  but the woman at the table behind us was flat out staring.  not occasional glances.  not the awkward look away when she notices you noticing her.  staring.  and for a moment, i wondered if abigail was being too loud.
but, she wasn't.  she was being joyful.   i wanted to share our story with her.  i wanted to tell her how we almost lost our little, twice, and that i can't help but be filled with amazement at the fact that she's still here.  i wanted to tell her that abigail had every reason in the world to act jealous of her sister.  but instead, she loves her.  and the thought crossed my mind.

this morning, i got up with little at 5:30.  seizing and vomiting.  then smiling.  then some more seizing and vomiting.  then laying in my arms and smiling up at me.  two doses of diastat.  sleeping.  smiling.  at some point, i became worried that she also hadn't peed since 6:30 last night.  and as 9:00, then 10:00 passed, and she still didn't go, i knew i had to call the doctor.
so, a trip to the doctor, a blood draw, an x-ray, and an ultrasound of kidneys and bladder.  she smiled at the ultrasound tech.  she commented on how amazing it was that a little girl that had, had such a rough day could still smile.  and the thought crossed my mind again.

joy can interrupt the longest of days.  but it doesn't generally whisper.  joy is loud.

eating.

i'm going to share the complete back story up until now of shilo, and eating.  i may cry as i type this.  

lots of children with Down syndrome, actually lots of children with low muscle tone for any reason, have initial swallow studies.  these determine whether a child, swallows safely, or if he or she aspirates.  shilo had her first swallow study at some point during the fifteen day stay at birth.  she passed it with flying colors.  we were elated to not have to thicken her bottle since we had been down the aspirating/thickening road with abigail already.

shilo taking her first bottle at a few days old.

at one month old, shilo had become incredibly lethargic.  she couldn't stay awake to eat at all.  i knew she needed an ng tube, but we also had to figure out why she was so tired.  this was our one week hospital stay in december of 2011.  we found out she had hypothyroidism.  she had dropped from 4 lbs 15 oz at birth to 4 lbs 4 oz at one month old.  so we came home after a week with an ng tube, and on formula mixed to have higher calorie content.  we would bottle feed her for thirty minutes, and whatever she didn't take got pushed through the tube.

shilo with her ng tube and oxygen weighing just a little over 4 lbs.

we kept the tube in for about six weeks, until i finally stopped obsessing over the calorie count that the doctors were pushing us to get in her, and decided that since she was growing, i could take the tube out. while i still had a doctor who wasn't happy about it, i refused to obsess since it was likely she wouldn't grow well until after her heart was repaired.
we had that tube out from january until the end of february when she got sick and was hospitalized for three months.  most of you already know that story, but if not you can start here and read through it all.  we were in the hospital for about twenty four hours before they had to intubate shilo.
we ended up spending 13 weeks inpatient.  nine weeks of that, shilo was intubated, with a vent breathing for her.  so for nine weeks she had a tube in her throat.  she didn't suck.  she didn't swallow.  she just layed there, sedated.

our very sick little.

during that time period, shilo had a procedure called a barium enema, followed by a suction rectal biopsy.  the ins and outs of that aren't important so much as knowing that she had an allergic reaction to...something. and the best guess anyone had (although i don't completely buy it) was that it was barium.  barium, is also the substance they use in a swallow study.
so, after she was extubated, nobody was comfortable doing a swallow study.  we had a speech therapist come in the hospital, and help us get started in trying to get her to take a bottle again, but we were mostly on our own.  so by this point, shilo had no idea how to suck on anything.  she also no longer had a swallow reflex.  she was fine with the bottle being in her mouth, she just didn't know what to do with it.  she had forgotten during that nine weeks how to use her mouth muscles.
so, once again, we came home with an ng tube, until we were far enough out from heart surgery that they could place a g-tube.  the next six weeks between home, and the g-tube surgery are all sort of blurry.  i had just lived in the hospital for three months.  i was depressed, had huge anxiety issues, and was caring for a medically fragile kid along with my oldest daughter-whom was readjusting to expectations after three months of only seeing me on weekends.
all that to say, i don't remember exactly when it started, or when it got worse, but at some point, shilo began vomiting.  like projectile, not spit up.  a lot.  upward of twenty times a day most days.  if you take a kid who has forgotten how to use her mouth, and then throw in her only association with her mouth being vomiting, well, she's not interested in eating.
at some point, i accepted that she would never take a bottle again.  from july of 2012 when her tube was placed, until her first birthday, we dealt with puke.  all the time.  she was hooked to her feed pump most of the day because i would have to pause her feeds every time she puked.  there was no rhyme or reason.  sometimes she would puke after 10ml (1/3 of an ounce).  sometimes she wouldn't puke until she was two ounces in.  we tried different gerd medicines.  we tried apple cider vinegar.  it just didn't matter what we did.  she puked.  except at night time.  she never puked at night time.
once she was old enough, i did start trying with things like purees, puffs, and so on.  occasionally we got what we thought was a swallow.  she liked to try foods.  it was just a matter of figuring out how to swallow them.
in moments of 'mama can't take any more puking' desperation, i had searched the internet for ways to make it stop.  i came across something called a 'blenderized diet.'  essentially, all it was, was feeding a tubie real food, blended, then pushed through the tube.  and every account i read said things like, 'my kid stopped puking' and ' my kid was no longer constipated.'
so after her first birthday, we transitioned.  it was truly a miracle for me.  my kid stopped puking.  immediately.  she came off of oxygen.  she was no longer constipated.  her coloring changed from pale, to a healthy pinkish.  she started rolling over.  it was amazing the difference it made.
i had also heard that switching to real food often made children more interested in eating.  and it seemed to coincide.  she would occasionally swallow a puff, or a small piece of meat. but then i had multiple people tell me how risky it was to feed her that stuff.  and so i stopped.  and she completely stopped swallowing anything.  we even did a few hunger trials (not giving her food through her tube to invoke the feeling of hunger).
i tried a feeding therapist an hour and a half away.  after one time i decided not to go back.  everyone said the same things.  'she has to be able to swallow because she doesn't drool.'  'we aren't comfortable doing a swallow study because of the possibility of an allergy.'  'we're just going to keep doing these things that you've already been doing.'  'we can't do intense hunger trials because she is on diuretics still.'
i gave up trying.  we still gave her taste of things all the time.  but i quit all the things everyone told me to do. she continued to get speech through early intervention.
recently though, she came off of her last two heart meds.  and so i began researching again.  i came across a blog of a parent who did child lead weaning methods with the tube.  it's an intense thing to do, because you withhold food from your child so that they experience hunger, and are willing to attempt to eat.  i have been trying to have conversations with a few different specialist about it.  i'm working hard to get people on board, because we are going to do this.
shilo, is interested in eating.  we always feed her, her blend while we are eating.  we let her try what we are having.  but not until i finally decided to go for it last night did i realize that we probably aren't as far off from the goal of being able to eat orally as i had originally thought.
i have so many regrets when it comes to feeding stuff with shilo.  i wish that i had known to get a therapist to work solely on feeding as soon as we got home from the hospital.  i wish i had kept giving her the bigger chunks that she liked, and swallowed, instead of being scared.  i wish i had started giving her real food through her tube earlier to stop the puking.  but, at the end of the day, i can't change those things.
this, this made me feel like i might just be able to win this one though.  and, like so many things with shilo, i have learned to stick to my instincts about things instead of relying so much on the experts.  medicine is a practice.  and i know my girl much better than any of her specialist ever will.