Prelude to the beach

Now that I am back from the beach I know it's time for an update. Here's the thing...I started my day getting blood sucked from my arm to finally see if I have the crappy Polycystic Kidney Disease (PKD) gene or if I am lucky enough to be the first generation it has skipped...which made me late for the ultrasound that was supposed to happen this morning which I had to cancel because apparently when you are old you all flock to the lab centers before they open, causing me to be (un)lucky number 55 and have to wait for 40 minutes. Needless to say, I had to reschedule said US and now I am sitting in the Border's parking lot typing on my teeny weeny little iPhone keypad all for the sake of this update only to find out that Border's doesn't cater to the early and opens at 9:00 and not 8:00. Super. Thirty-one more minutes to go...

Anyway, this gives me time to give a little overview of our beach trip to Chincoteague/Assateague. First off, we were a little sad that Daddy didn't get to come since he decided it was way cooler to sit at home and type his grad class presentation, so we missed him. Despite all of this, I am proud to announce that with about 95%confidence I can say that Cameran is going to be a water baby/beach bum as she grows up. She tolerated the beach for about five hours each day. I made Pappy fill up her mini pool to cool off/de-sand in, and thanks to my friend Christine, Cameran had her own pop-up tent to chill in, sand-free. Plus, since my family always looks like a circus with our immense beach set-up, we also had the shade of a full canopy tent and two beach umbrellas (it was only Pappy, Nanny, Cameran and me).

When we weren't being beach bums we rode around the island, went shopping (Pappy baby-sat ALONE for the first time!!), ate Mister Wippy's ice-cream, ate steamed crabs, relaxed, played cards, and took Cameran on her first official pony ride!! We even had a campfire one night.

All is well documented, and I made Ryan sit to watch the slideshow.

Pics to come :)

Gene...

Simmons that is...









Oh, Cami, I am gonna have to lock you up when you're older for sure now...

Who Needs a Crib...

...when you can sleep comfortably in your Jumperoo....

(So comfortably, I might add, that there was snoring involved!)

So many captions...

"Sleeping Fly Trap"

"Away in a Jumper"

"Now I Lay Me (Standing Up in a Jumperoo) Down To Sleep"

Ahh, to be a baby. 

Fruitfully Fruitless Friday

Today was spent playing and relaxing. I did a twenty minute garage sweep and rearranged all of our stored furniture in the hopes of not having to rush when prospective buyers come to see the items for sale. Cami did take a forbidden excursion to daycare for a ten minute visit. I needed to pick up the almost entirely full can of formula that was about to expire being that it was already opened when Cameran was still in attendance.

Everyone was so genuinely excited to see Cameran, asking how her treatments were going and cooing and making all over her. We left knowing three things for sure:

1. Cameran is tan. Extremely tan.

2. Cameran has grown (mainly in the cheek area, but length was also noted)

3  Everyone misses Cameran.

The day continued with a bunch o' lazy loungin and playing. OT has us working on keeping Cameran's hands from fidgeting/stimming together with a lot of hand-over-hand play. It is difficult to distract her because at this time she is also feverishly rubbing her head almost as much as she rubs her hands together. We will fight the head battle later (actually hoping once we are off of seizure meds it will stop altogether.)

Here is the rest of the day in pictures...

Lazy Loungin with Daddy was fun...

Jasmine and Nala don't let us forget they are our "four-legged children".

Then it was bathtime.  Cameran loves water if it is in the pool, but she hasn't quite mastered that bathtime is fun.  She's still "lukewarm" about her baths.

Finally, the three of us (and Nala) snuggled in bed to watch the brand new Phineas and Ferb. (What fantastic Friday night family entertainment!  What more could you ask for??)

Ryan and I will be taking bets on when Peanut falls asleep.  It's about 9:40 now.  I am going with 10:30 (thinking optimisically baby!)

Double Dates

Ryan and I don't exactly get out much.  Between his three grad courses and me staying home with Cameran where it is safe and not germ-infested (not that I am saying any of you are dirty, but you know--public places like the mall, Target, grocery store) due to her compromised immune system thanks to (sarcasm) ACTHar shots.  Don't get me wrong, we will live in a freaking bubble if we need to until her treatments are finished, but it gets old.  Especially since it is summer.  In any case, here are a few shots from yesterday...
                                           So Big!                                                                Giving King Julian a beating...

                                                                                         Me so hungry!



And then there's this morning. Peanut was so tired she literally passed out as I was feeding her.  Hey--a nap is a nap--I'll take what I can get!!!

Finally, the title of this post.  Double dates.  Alone.  Just Ryan and I thanks to my mom and colleague who, in consecutive days watched Cameran so Ryan and could get out for some much needed married time sans baby/seizure/Down syndrome worries conversations.

Too bad yesterday when my mom watched Cameran we drove all over York not knowing there were rolling black outs (thankfully our tiny little area was not at all affected).  Both area theaters had no power, as we quickly found out.  We were determined, and headed north to a steakhouse and had a nice dinner instead.

Today we are off to see the guaranteed to make this Mama cry movie, Toy Story 3... 

Cheers!

Now (Chunky and full of head rubbin')

You'll have to forgive me.  This is the first video I am posting from my iPhone and I just gave myself a crash course in YouTube/html/linking...

In any case, this is from today.  If you view the previous video "Then" you can see how in just two and a half short months she has blown up with puffiness from the steroids and is fixated on her noggin. 

Video clip...Then (aka Before Seizure Meds)

This is a few months back in mid-April after just beginning Topamax but before the steroid shots.  Disregard my obnoxious laughing...

Weekend in review...and a little domesticity

This Fourth of July was pretty subdued. We did not have sparklers, nor did we go to any BBQs, other than my parents' house because, well, Cameran...


We still are in the midst of these ACTHar steroid shots. Previously I posted about Cami being an insomniac. She truly is. And it's the meds and I hate them for doing that to her.  You can see her below in her pretty 4th of July dress, looking drugged up and puffy.  Boy has her face gotten puffy in the past two weeks.


(Just a little note--I'd like to think I am a better photographer than my pictures show, but I am pretty sure that 95% of the pics on this blog come from my iPhone, hence the fuzziness of some.  The timer has such a delay.  Sigh.)

Insomniac

Not me.


Not Ryan...


Not the dogs...


CAMERAN!!!!!!!!!!!!! 








Note to Cameran:  Please know that even though your seizure meds make you a bit nutty, it is OKAY to sleep for more than five hours at night. 


Not only that, it is okay to fall asleep BEFORE midnight. 


It is okay to sleep in past the first glimpse of sunrise. 


And, it is okay to take more than one half hour nap a day.

Love, Mommy and Daddy








Sheesh.  Don't you know that you're still a baby, even though you're on 'roids???


Oh, and Happy 4th of July to all.

It's a Jungle In Here

Cameran's latest obsession (when she is not rubbing her hands or head) is her obnoxious cute lil jungle toy. 

I'm a great big el-e-phant

Stomping here

Stomping there

I'm a big and tall giraffe

Standing so high
I'm touching the sky

I'm a tiny little penguin
Wobbling here
Wobbling there

I'm a very friendly parrot

Chatting out loud

For all to here

Listen to the music and get on your feet

Move like the animals

Stomp your feet

Waddle like a penguin

Stretch up tall--like a giraffe

Dance like a monkey

And laugh, laugh, laugh.

Entourage

A pic from the new Inspiring Hope playground swing. 

We need to find a new fixation for our hands which leads me to....

The newest member of Cameran's entourage (and you thought I was gonna write about the TV show), OT Nikki!

Me thinks me likey.

She is from a different agency than Cameran's PT and DT.  In fact, she comes from the Harrisburg area and the Capital Area IU, which apparently has a decent reputation, which is good if we ever do move school districts and cross county lines.

In any case, she is bubbly, young, fun, on time, and made over Cameran like she was the the cutest kid she had ever seen in her life (well come on now, we know it's true).  She has all sorts of ideas for how to get Cameran to stop stimming with her hands and rubbing her head so she can participate in more active and purposeful play.  You can completely see if you look back through pictures that most involve Cameran's hands clasped together or on her head rubbin away.  (She's going bald on the left side again you know.)

At any rate, we are now well versed in the alphabet entourage.  DT, PT, OT, CM, ENT...

And I can't wait to see her new bonnets from this etsy website!