Friday, November 29, 2013

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.

Sunday, November 24, 2013

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.

Tuesday, November 19, 2013

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.

Wednesday, November 6, 2013

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.