Tuesday, June 29, 2010

Pool Party

Yesterday we went to a co-worker's house to swim.  Cameran was pretty sleepy, but when she finally woke up we lathered up with sunscreen and took a dip in the pool.  Here are a few pics from her swim.


You know the cable channel, "A & E"?  Along with playing repeats of my favorite show, Criminal Minds, they also have shows about people with addictions.  You know, drugs, alcohol, shopping, gambling, OCD, other compulsions, and hoarding.  Something like pack-ratism to the 1,000,000th degree. 
I feel kinda bad for these 70-80 year olds who have some sort of mental instability that makes them not throw ANYTHING away for years upon years, and then they cry and have meltdowns when A & E comes dashing in offering counseling in exchange for a clutter free fresh start.

Then there are the cat ladies.  They are just nasty.  Poop and pee all throughout the house.  G-R-O-S-S.

What am I getting at you wonder?  Let's just say that Ryan isn't too far off the mark when he says that I am a beginning hoarder.  I for some reason find a reason to save things.  Clothes that are a few sizes too small that I might "someday" wear again.  Happy Meal toys that Cameran might play with once she is over age three.  Cards. Like all cards that I have ever gotten.  It goes on and on.

Anyway, we are getting new shelving for our walk-in closet to make our bedroom less cluttered and more organized.  The in-between process involved moving piles and piles of clothes and whatchamacallits onto the bed, into the baby's room, into the computer room and all over our bedroom floor.  Needless to say it looks like an upstairs explosion.  We actually had to sleep downstairs on the sofa and recliner the first night because the closet wasn't finished and the bed was covered in no less than a three foot tall pile o'clothes. 

Fast forward to the next day and the bed got cleared off.  Now it's time to clear the rest, and do it correctly the first time.  Piles o' crap: Be gone!

Saturday, June 26, 2010

BJs (The Wholesale Club People...sheesh)

We started off the day with a little Phineas and Ferb lovin...

Then we went to a nice wedding reception/picnic of a colleague of mine, followed by a trip to see the new all-inclusive playground at Cousler Park.  That park is rockin!  Our local Down Syndrome group donated a portion of the funds and has a picket engraved with our group's name.  

Friday, June 25, 2010

Fun in the Sun (And Shade Too)

Today we rolled around, laid against Jasmine, examined our hands....


and did a push-up.

We also enjoyed a nice sunny and breezy day out by the pool.

And while Cami and I swam and lounged,

Daddy did this...
Poor Daddy.

And after while we came back inside, dried off and read some good books...

What did you do today??

Bliss in the form of...

A NAP!!!

Cameran, the incredible-non-napping-steroid shooting-staying awake until 11 pm and waking up at 5 am baby girl of mine passed out sitting up today.  It was glorious.  A whole hour.  I never before have taken advantage of a nap like I did today.  Threw a load of laundry in, changed outta my clothes and into more appropriate "tanning apparel", grabbed my shades and a few magazines and headed to the deck.  It was BLISS.

Thank you Cameran Leah.  I love you.  Now we are off to the (kiddie) pool.

Thursday, June 24, 2010

First haircut!

Okay, okay, so it was more of a trim....



Brave Little Miss Peanut (aka-The long, somewhat dull seizure post)

Miss Cameran is proving to be quite the All-Star when it comes to receiving her daily steroid injections.  Some days she does not even cry.  I never knew it to be possible, but I think my little 15 month old baby is now in my top five list of heroes.  She is so brave and so strong to go through the amount of doctor visits and poking and prodding and therapy that she endures on a weekly basis. 

I never really recorded this whole seizure journey yet and since I had one too many cups o' joe today and am still awake at 1:00 am (which I am going to completely and totally regret at 6:00 when Cameran is up and at 'em) I may as well begin...

When we began PT (probably sometime in early March) the woman we were "assigned" came and did two initial consults, knowing we would be picking up full-time PT to get Cami movin and groovin on her development.  On the second consult I had noticed that Cameran was "hiccuping", which often times resulted in what Ryan and I would call "head butts" to the person holding her.  The PT looked at me strangely, and announced that these were most definitely not hiccups, as they were occuring in isolation and in erratic intervals.  Basically she was the one who mentioned they might be "drop seizures" and to let the pediatrician know.

Luckily by this time her 12 month check up was right around the corner.  For the next week or so we, along with daycare, attempted to chart where and when she would have these "episodes".  Of course, when her appointment came along she did not have any head drops at the office.  However, knowing how my anxiety gets with Cameran's medical needs, her pediatrician did not make us video tape them, and told us to immediately go to a pediatric neurologist.

Long story short, we went to the neurologist for a consultation on March 30th.  For an hour we sat and discussed Cameran's espisodes with Dr. K.  Naturally, Cameran played opposum and did not have any episodes at that appointment either.  I came prepared though, and had recorded two that occured within a minute of each other while Cameran was in her high chair eating.  She agreed that they looked like "infantile spasm seizures" and that we needed to get an EEG scheduled and medicines decided. 

To anyone who may go through a similar situation with a child or loved one--DO NOT  PRETEND YOU ARE DOCTOR GOOGLE--all that results is unneccesary worry and a lot of extraneous stress.  We did this and read words like "catastrophic" and "mild to severe delays".  Super.  Our child already has delays from having T21, let's add a few more ailments.  So again, do. not. google. diagnoses. EVER.

Because of our work schedules we did not begin with the most aggressive treatment (ACTHar steroid shots that we would need to stay home with her for increased infection/sickness risks), but instead opted for a broad spectrum seizure pill which many migraine sufferers know to also use called Topomax.  We saw less spasms, but it did not rid them totally, so we increased the dosage.  This seemed to help and they decreased still, but seriously, sprinkling 8 pills into a baby's food is no good, especially when it is not 100% working and the neurologist wanted to increase the dosage more.  Her second EEG on May 3rd showed no seizure activity, but irregular brain patterns and we were still seeing an occasional seizure when she would wake up.

The good news came on May 17th when we saw Dr. K for Cameran's MRI results.  The previous Friday Cami had to be put under (and they stuck my brave little girl three times before getting the IV in) to get an MRI to see if her brain was developing correctly and to possibly see if there were any areas that may have been the source of her infantile spasms.  EVERYTHING CAME BACK NORMAL!!!  What a relief!  As far as we know this means that these seizures have not caused any further impairment, other than delaying her progress during the 6-7 months we thought she was "hiccuping". (What baby would want to try to push off the ground knowing every 2-3 minutes it is going to involuntarily flop forward??!!)

We made the decision to begin the paperwork for the ACTHar steroid shots at the end of May.

Finally, on Tuesday, June 8th after a few miscommunications from the home nursing agency and the neurologist we began injections.  By that Friday I sucked it up and began administering them myself...Ya see, originally Ryan and I decided we were going to utilize as much homecare nursing as insurance would provide.  Neither of us wanted to job our poor baby with a needle filled with syrupy goop.  Then the nurse from hell came and that changed everything.  The Reader's Digest version is she smelled like an ashtray, didnt wear gloves, didnt wash her hands, had long nasty yellow fingernails, didnt teach me diddley squat AND when she gave Cami the shot she lost her grip and let a 3/4 inch needle dangle from the top of my girl's thigh muscle.  This Mama was not a happy camper.  I hate conflict, but you better believe I called the next day to complain about that chick.  Bonkers. 

The subsequent nurses were great, and on Friday I was encouraged enough to just conquer my fear and learn how to administer the shot.  (I mean, come on--I am a teacher, right? Shouldn't I be able to figure this out??) 

Cameran slept almost non-stop the first few days she was on the shots.  She still was/is receiving her 8 Topomax pills as well.  She was grumpy when she was awake, and still had a few seizures limited to when she was waking up.

 By the end of the weekend though, she was back to herself.  She even began showing more interest in her toys, and began pushing herself up like a champ.  She sat up for insanely long periods of time, and even removed stacking stars from the pyramid-like toy!  We think she says "Hi" when you say it first, although it sounds more like "Ha-ah"  In any case, she is doing amazing new things.  And her eye contact---what was once almost non-existent is now frequent and purposeful.  And she smiles--can't actually capture any good ones, but she smiles.  A LOT.  Did I mention she eats like a horse and doesn't sleep??? Like really really doesn't sleep. As in she doesn't nap kind of doesn't sleep....sigh...for the good of the cause ;)

Sunday, June 20, 2010

Father's Day

Happy Father's Day to my wonderful, amazingly hands-on baby daddy, Ryan. 

I love...
-you for all that you do for our family. 
-that you come up with cute nicknames for Cameran that no one understands the origin of but you and me.
-that you study Cameran's face, waiting for her to smile, and then break out your own perfect Daddy-smile that shows the only person you are focused on in that moment is your "Best Good P".
-you for sticking close after learning of Cameran's extra needs instead of doing to unthinkable, which I unfortunately know that some men do.
-that over the years you have taken jobs that you loathed in order to contribute to our household.
-that you have an insatiable drive for physical fitness and health even when it makes me nutty that you wake up at 4:50 to go to the gym.
-that you search You Tube for cartoon theme songs to play for Cameran and me.
-that you search iTunes for more theme songs, most recently the Phineas and Ferb soundtrack that has been downloaded and played in its entirety.
-are a kid at heart, and have loved Toys R Us trips even before we had Cameran even though I pretend that it is annoying.
-that the crook of your arm is where Cameran is most comfortable and is almost a guaranteed "sleep spot".
-that even though you profess to dislike changing diapers and giving bottles, you have given more than a lion's share.
-that you play Disney movies and snuggle Peanut on the sofa until you both fall asleep.
-that you always know what kind of card/gift to give that means the most at any given time.
-that you regard life on "Gerber time" as I call it, knowing that when something is truly important, you'll be there.
-that you have a quiet confidence.
-your witty sarcasm and dry sense of humor.
-that somehow God put us in each other's lives in order to create this most perfectly wonderful life.

Happy Father's Day.  I love you.

And to my own Dad.  Thank you for being who you are.  If it was not for you and your quiet wisdom, I might not be who I am today.  You are the Wind Beneath My Wings. I love you too.

Saturday, June 19, 2010

Chunky Monkey!

My sweet sweet Peanut is turning into a Piglet.

Apparently when you are 15 months old being only 18 lb 5 oz puts you in the percentile of nada. However, pump some steroids into baby girl and wala--2 lbs of chunk in a week. Twenty lbs is more around the 25th percentile. Yay to being back on the "typical" chart.

Thursday, June 17, 2010

Sweet, sweet summertime

I love everything about summer.  And not in the "I teach just to have time off 2 1/2 months a year" kinda way.  (Although it is a undeniable perk of the job.) 

To show my deepest appreciation to this blessed season here is my...

"Ways That Summer Rocks ..." List

Sleeping in (kinda-thanks Cameran). 
Staying up late(r).
Corn on the cob
Steamed crabs
Ice cream truck
Snowballs from Mason Dixon Farmers Market
Fireflies at night
Swimming with Cami in the kiddie pool
Sitting on the deck
Refreshing margaritas on the deck of a restaurant
The beach
Swimming in the ocean
Beach towels
Suntan lotion smell
Ice pops
Summer re-runs
Summer Blockbusters
Reading on the deck
Morning coffee that I can make at my house and not rush to drink
Homemade Iced Tea
Going to Illinois
Taking walks
Going to the park
The library
Not thinking about work
No agenda
Ball games
Cooking out
Cooking out with friends
Cooking out at my parents' house
Veggies on the grill
Taking pictures
Window shopping
Real shopping
Being with Cameran
Being with Ryan
Watching the dogs play in the hose
Watching Cameran play outside
More daylight
Nature's sounds
Frozen mochas (who am I kidding--this is a year-round thing)
Thunderstorms in the distance
Rainbows after a storm
Scent of fresh rain
Lake Michigan
Navy Pier
Cellular Field (White Sox)
Wrigley Field
Field Museum
Michigan Avenue
Tiger lilies
Gerbera daisies
In-law's pool
Natural tans achieved from being outside and not from trying to tan
Fall television show teasers
Watching corn grow
Chincoteague Island, Va
(This year only) Cameran finishing her seizure meds
Watching the dogs chase the bunnies that make their nest under our deck and not being able to get them
Tom's Cove Campground
Mister Whippy's Ice Cream
Finding the perfect groove in the sand to lie on
Getting as close to the water as possible and discovering the tide is coming in and needing to move back
Finding conch shells in the ocean with my toes with Mom
Pods of dolphins swimming near the sandbar
Not wearing makeup
Wearing bum clothes all day long
Wild ponies of Assateague
Petting the Chincoteague ponies in the corral at McDonald's
Flip flops
Sherry's Ice Cream
Sunbleached hair
Drives just because
Yard Sales
Discovering awesome new "driving songs" to belt out with no one else in the car
New playground equipment at Cousler Park

Doing as many of the above as possible or none of the above on any given day

The list goes on I am sure.  This will have to do for now.  Happy summer!

Tuesday, June 15, 2010

Catching up...an introduction

Where to start??  Maybe since it is summertime in the world of NMS teachers I will now actually blog on a semi-regular basis.  It does make a quite tumultuous task trying to play catch-up with everything I actually want to write about Cameran and her development seeing as though I pretty much did little to know actually baby book writing.  This blog is supposed to be her pseudo-baby book.  Sorry Cami.  Mommy teaches English and Reading, but apparently doesn't take time to do much writing herself. (It isn't weird if you write in third person assuming your little one will someday be reading this...)

So here are some of the things in a stream of conscious list that I need to catch up blogging about:
1. Cameran's seizure activity progress
2. Cameran's interventions/therapies
3. Cameran's new firsts
4. Good books
5. Summertime
6. Our 6 year anniversary
7. Father's Day

And I am sure a bunch of other things will pop up, but for now this will have to suffice.  Since starting these shots 7 days ago Cameran has become quite the big eater/non-napper and so I am off to shovel food in her face and prep her shot (Yuck!) and pray she falls asleep before 9:30 unlike last night.
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