Same s%*t different day

We are still in the hospital. We are still waiting on test results and to have more tests completed. If you test McCall for something, chances ate it will come back positive. So far she has an ear infection, pneumonia in her left lung, and kidney infections most likely in both kidneys. Oh and she has influenza so we are on hospital lockdown, which I think just means that they want to see just how many disposable gowns and masks that they can charge us for. Doctors will do kidney ultrasounds later today to see how their function is and if any damage or abnormalities exist. So fingered crossed these look good. She is on broad spectrum antibiotics until cultures come back to tell us which ones are and are not working. Basically we can't leave until the chest x-ray shows an improvement in the pneumonia because based on all the IV fluids she has been given, they can actually slow down healing. Double edged sword :( She is in pretty good spirits, but at times really confused. It scares me because it shows just how sick she really is. But it's funny too. Yesterday out of nowhere she said "Daddy said Justin Beiber died.". My fad and I almost lost it. When asked about this Rob assured me that he had had no such conversation. So today is more hurry up and wait. And wait and wait.

Miss McCall update

Well I apparently got a little too comfortable in our routine, and just like that we are right were we don't want to be. McCall woke up Sunday with a high fever and chills. Then started the vommitimg of Mountain Dew colored puke. TMI I know. The weirdest part was the abdominal pain she complained about. I feared appendicitis. After consulting with her pediatrician, who by the way is the coolest Dr. in Boise, we decided that a visit to our second home (AKA St. Luke's) was in order. Long story short, since I'm posting from my phones keyboard, lots of tests later, and we have come up with pmenomina and kidney infection. Dr's are kind of baffled at the combination and how her symptoms have presented, but apparently they don't know how us Vians roll! So as it stands we are aggressively treating both with antibiotics. We are hydrating her like no ones business. Her fever is under control for the time being. We will do more chest x-rays tomorrow to address the pneumonia and it sounds like also an ultrasound of her kidneys too. Stay tuned. To top off an already lovely day...now Bodie has a fever of 103 :( You might have to visit me at the funny farm after my nervous breakdown.

Ebb and flow

 

Our weekend has started out quiet and homey, just the way it's supposed to be.  I am feeling content today. Exactly where I'm supposed to be--over my funk, productive, reflective, slow and steady.  

 

 For all the times I feel an imbalance—feeling too busy, uninspired, exhausted… when's-it-going-to-iron-out--it's assuring to know, there is a rhythm to all of it. Right now, in this tiny moment of time, work and family feel so appropriately melded. Dare I say we have molded into some sort of routine. 

 

I feel both inspired and at peace; motivated and content; excited and calm; and even if that balance shifts tomorrow, its presence right now is enough to remind me, it works out. Ebb and Flow, Shift and Settle.

"look mom...I got your plants again.  aren't you proud of me?"

McCall and Bodie both got to go to Build-a-Bear Workshop for the first time.  McCall is giving her bear a bath :)

  

Long story short, the Vian family is good. Busy, hectic, CRAZY...but sooo good.  Loving our little routine in our little corner of the world.  

And so lucky we were able to visit the cabin this winter.  We had so much fun doing nothing!

Best Daddy evah...he drove to the cabin with McCall's bear so she wouldn't get car sick on it. 

Lots of fun in the weeks to come.  I'll try to keep my long lost blog updated...

Randomness in the New Year

What a way to ring in the new year...knee deep in throw-up and...well you get the picture.  Yes, sickness has again hit us.  And by "us" I mean Rhys and I.  We are lucky...sarcastic lucky.  Like run away as fast as you can if you are with us in a lighting storm...run fast the oppisite direction.  We promise not to be mad :)

Anyways...I *think* we are finally on the mend.  We even ventured out yesterday and Rhys was back to his ol' self...

  note to self...his arms are growing at least an inch every day so nothing is safe...even pushed all the way back on the counter...Target popcorn included!

Which brings me to another point.  I now have another excuse to LOVE Target. If you were browsing through  the Target ad last Sunday you may have passed right over the adorable little boy in the bright orange shirt smiling at you on page 9!  And if so, I’m glad!
 
The reason I’m glad?  Well, that stylish young man in the orange shirt is Ryan. Ryan just so happened to have been born with Down Syndrome, and I’m glad that Target included a model with down syndrome in their typical ad!


This wasn’t a “Special Clothing For Special People” catalog.  There wasn’t a call out somewhere on the page proudly proclaiming that “Target’s proud to feature a model with Down syndrome in this week’s ad!”  In other words, they didn’t make a big deal out of it.  I like that. 

While Ryan and Rhys have very different syndromes, it still moves me.  Even though Target didn’t make a big deal out of the fact they used a boy with Down syndrome as a model in their ad, they said plenty. 

1. They said that kids born with missing or extra chromosomes deserve to be treated the same as every other other person on this planet.
2. They said that it’s time for organizations to be intentional about seeking creative ways to help promote inclusion, not exclusion.  (It’s no accident that Target used a model with Down syndrome in this ad; it was an intentional decision.  If want the world to be a place where everyone is treated equal we can’t just sit around and watch the days tick away.  We have to be intentional.  We have to do something.)
3. They said that companies don’t have to call attention to the fact that they choose to be inclusive in order for people to notice their support for people with disabilities.  In fact, by not making a big deal out of it they are doing a better job of showing their support for the special needs community.
4. They said it’s important for the world to see people born with disabilities with a fresh set of eyes.  That it’s time for us to lay down all the inaccurate stereotypes from the past and move forward embracing the future with true and accurate ones.

So thanks Target...I'll give you my money any day!

OK...back to the New Year.  2012 is going to be grand. I've been thinking about resolutions--because that's just what you do this time of year. I want to find more ways to let the people I love know I appreciate them. I want to let go a little more--of fears, of insecurities, of the things that hold me back. Wild and free, Baby. Wild and Free.  So Happy New Year!

The Incident

So, let's see--it's T-minus-six-days, until Christmas so I should be ready and enjoying the season, right?  Wrong.  Really I have so much left to do, am slightly freaking out and…I know it sounds paranoid but The Little Drummer Boy song is stalking me.  Every station, every store, he’s everywhere and I can't bear to hear "Pa-rum-pa-pum-pum" one more time. We get it. Your drum makes a noise.

Anyways...I can finally try to pull myself out of this holiday rage now that work has settled down.  Who knew that the President of Gap Inc. would want to shoot the shit about Boise State Football?  My boss nearly died, and I just rolled with it.  Good thing I know a guy who taught me a thing or two!

Rhys got some chocolate while the kids did gingerbread houses...and no seizures!

We are have fun with “Friendly the Elf”.  He made his appearance last year and the kids couldn’t wait for him to come back.  However, we did have an incident. 

Rob’s parents are visiting for the holidays.  Papa Bob wanted to dip into the candy dish, which happened to be where Elfy had landed for the day.  All the sudden a blood-curdling scream, the kind that makes the hairs on the back of your neck stand up and prompts an instinctive reaction of Bolt and Get to my Kid. You would have expected blood. "I thought a poisonous snake bit her," my father-in-law admitted later. Rob called me at work and said, “We have a problem.”

So when I got home McCall was being so brave and trying not to cry.  

“Tell me what happened McCall”, I said.

"Papa Bob....Papa Bob....(gasp, gasp)," she couldn't finish.

"Papa Bob what? Papa Bob WHAT?" I insisted.

"Papa touched the elf."

And this is the point I admit--having an elf might very well @*!# up your kid.

I responded quickly and (ir)rationally. I drafted a letter from Santa, on his own stationary of course, which had “magic dust” (glitter and sugar).  Santa instructed her to sprinkle the dust on Elfy so he could get his magic back.  Turns out it worked, because this morning he was taking a marshmallow bath in the bathroom!

 

"This is ridiculous," Rob mumbled and laughed. And I know he's right, but I wanted to save the magic. I mean, you should have seen their face when I made elf donuts the other day (cheerios with sprinkles).  They smile the biggest smiles every morning every morning when they find him in a new spot, and there's something so beautiful about the power of imagination--the ability of a really good story to add wonder and magic and tradition to our Decembers. But I also don't want my kids to end up in Christmas therapy someday. 

Mr. Pouty Pants.  He wasn't ready for me to take a picture :)

 And that's how Christmas magic is reinstated after a small elf disaster. The End.

 

FAST Gala

When everyone else was watching the BSU game Saturday night, I was streaming the 2011 Foundation for Angelman Syndrome Therapeutics Gala...live from Chicago.  It's not that I don't love me a lop-sided Bronco game, but I simply had to tune in to hear fellow AS parent Colin Farrell.  He was the guest of honor and so inspiring.  It is a blessing to have a celebrity with a voice...and his message was simple and clear.  "Hope reigns supreme." 

FAST and their researchers are doing amazing things.  The Gala has so positive and hopeful, and makes me believe in my heart that someday soon my little man will be talking and walking and its because of this foundation that he will live up to his highest potential.

This article highlights the gala.  I would love to try to make it there next year...too bad I work retail!

FAST produced a video here.  It is 30 minutes long, but it moved me to tears to see other angels.

Why am I boring you with this?  Well, if you, like me, have nothing better to do next Saturday night tune in because the 2011 FAST Gala is being filmed by NBC and aired PRIMETIME on NBC at 8pm.  Bob Costas is featuring 4 charities around the country, and FAST is one of them!  It is so exciting that awareness is being grown.

So thanks for reading.  Thanks for bringing awareness by supporting our little man.  Thanks to the family and friends that surround us on this journey...I am forever grateful...and hopeful!

Sickness has left the bulding...hopefully!

Randomness to follow...

What a week it has been.  We graced St. Luke's ER with our presence twice...and let me tell you if you go on a Friday night it is very interesting.  Rob was quite amused with the drunk man in the room next to ours...who won the highest blood alcohol level of the night at, wait for it, .4! Holy crap how do you get that  drunk?

Rhys had a horrible case of croup and a nasty fever to go along with it.  Unfortunately, when Rhys gets a fever it also contributes to horrible seizure activity.

Long story short, our neurologist prescribed a great drug that has been controlling his seizures phenomenally well.    The second ER trip sent us home with a home nebularizor treatment, inhaler and steroids for his lungs.  Rhys struggled with his body temperature and was a clingy, sad boy for a good week....but I can now say he is back to his old self.  Thanks to our "village"...you know who you are...for all the well wishes and support.

I can't update without a picture, so here is my birthday and anniversary present.  I begged for family pictures and I recieved.  They are more than I could ask for.  If you have ever tried to take a picture of Rhys you know it is not an easy task...and our photographer came through.  I'm so happy to have pictures of all of us!

Lastly, in case you are interested, some of you like to hear new things in terms of Angelman research...this is an informative and encouraging article I came across.  You can find it here.  Someday,  my dream might just come true.  To hear my little man say" I love you Mama"...I can't even imagine!