Saturday, April 30, 2011

FIVE - seriously?

I'm really having a hard time believing that my tiny, little boy is FIVE!  Four was one thing, but five is like....old!  The weather turned out to be great today and he thoroughly enjoyed his "Jake and the Neverland Pirates" party. 
Breakfast choice - Cinnamon Pop Tart and Oranges

Silly Pirate!

My "semi-professional, homemade cake"
Humiliated pirate
Birthday Boy

Who loves cake?
Happy, Happy Birthday!!!!
Please, oh please just let the kite go!!

Monday, April 25, 2011

Picture Heavy

Instead of working in my massive "to do" list today during naptime, I decided to clean the 400+ pictures off my camera.  So, you will be rewarded for my laziness!!

Wrapping up our last hospital stay - Marissa says, "It's okay, Daddy, I'll be home soon!"

So, they wouldn't cooperate for a "perfect" picture, but for some reason, I LOVE this one!

I am still stunned by how pretty she is even though I see her every day!

He just makes me smile!

Sunday, April 24, 2011

He Continues to Amaze Me!

Day 1 - 11mos, 3wks old - 12 lbs!
FOUR years ago today we walked into an orphanage in Bishkek, Kyrgyzstan.  We were filled with anticipation and excitement over meeting this little person who would, of course, love us unconditionally and become our son.  We were nervous, exhausted from over 36 hours of travel and had no clue what to expect.  I will never forget those first moments.  I can still smell the orphanage, see the rooms, the hallways, the women's faces, the little cribs all lined up in rows.  I can hear the eerie silence that didn't really seem odd to me until after we left.  I don't know that I've ever had the courage to blog about the actual first feelings I experienced when Esen's caregiver brought him out to meet us.  He was so small, pale, shaky.  He could barely hold his head upright.  I remember my excitement turning to fear and the thought that overtook me was "I can't do this."  I was so not prepared to meet this little boy who already had so much history and endured so much trauma.  Esen survived our nervous glances, a few touches and eventually being held for a few moments.  Little did we know at the time that it would be weeks before he would learn to tolerate touch and months before he would look us in the eye. That first two weeks we spent with him in Kyrgyzstan were priceless.  I never imagined a person could change so much so fast.  He literally changed hour by hour.  By the end of our time there he was enjoying being held by us; he was not frantically crying through every feeding for fear that we'd stop giving him food; he was pushing up on his arms and looking stronger and stronger.  It didn't take long for me to realize that there was an incredible spirit buried deep beneath the surface of this small soul and in time, we would continue to see more of it.

Over the past four years, Esen has continued to grow and amaze me every single day.  He has overcome obstacles both physical and emotional that we cannot begin to understand.  His intelligence blows me away and truth be told, I fear that I won't be able to keep up with him.  Esen baffles me sometimes and I've learned that I can be okay with that.  Frankly, he has baffled some in the medical community as well.  He just doesn't "fit the mold."  I've learned to stop searching for answers and realize that " just is what is!"  I cannot imagine where the road will lead for this crazy, little boy of mine.  I have no doubt it's going to be a wild and VERY fun ride!! I am so grateful that our life circumstances took us to that tiny pancreas-shaped country that we'd never heard of and that out of hundreds of millions of orphans in the world, Esen was chosen just for us.  I cannot imagine our lives without him.  He truly is a miracle and is definitely my hero! 
Happy Gotcha Day, Little Monkey!!

Friday, April 22, 2011

True Beauty....

It never fails, every time I see a new photo of her, I'm struck by her simple beauty.  Perhaps it's her incredible spirit that always shines through or the strength and resilience I know she has.   My heart hurts more today than ever knowing that she is in a hospital, in pain, without her family.  I'm grateful to those angels who are so filled with compassion for these children that they visit them, hold them, comfort them, bring them gifts and give them precious, priceless moments of love.

Tuesday, April 19, 2011

Surgery for Kamila

I just received notification that Kamila is scheduled for her second surgery tomorrow (tonight).  Please keep her and the German team in your thoughts and prayers.  It absolutely breaks my heart that she has to go through this alone.

Monday, April 18, 2011

And the Winners Are..............

The 147 Million Orphans T-Shirt goes to Allison

The 147 Million Orphans Magazine Bead Necklace goes to Michelle

THANK YOU SO MUCH to all who participated and supported B & H!  You have no idea how much it means us!

Friday, April 15, 2011


Because of the excitement of the last couple of days (and the week I "lost" being in the hospital) I missed the Raffle deadline, so I'll extend it through the weekend.  So far we have a handful of entries so your odds are pretty good!  We need to raise about $8,000 by the end of May so if you have a heart for a couple of super sweet Ethiopian orphans and want a chance to win some cool stuff please consider donating.  HERE's the original post/rules.

Is that Hope I feel?

It's been soooo long since I've had that real, tangible feeling of hope for Kamila.  Today, I actually have it.  Yesterday, the Kyrgyz Government passed the new Family Code lifting the adoption moratorium.  There is a lot that has to happen in a very short amount of time, but we are closer than we have ever been before to actually getting Kamila home!!!!

Tuesday, April 12, 2011

A Brighter Day

Just when I get all Llama Drama "woe is me" whiney and complainy, she turns it all around.  Today was a good day.  There were many fewer tantrums, only a couple of self-abusive episodes and a handful of gags.  The weather was gorgeous so we spent a good amount of time outside which is generally Marissa's favorite place to be.  We went for a couple of walks, played around the house, swung on the swings and Miss M even allowed me to do her hair!  We're far from out of the proverbial woods and I know that we could just as quickly go backwards, but hey, I'll take today and cherish it! 
just chillin'

"you wanna do WHAT to my hair?"

"okay, it wasn't soooo bad."


Really cool digger at the church down the road from our house

Monday, April 11, 2011

Hard Days

Happy to be home - YES!  But, in the spirit of "keepin' it real," I'll admit it's been a couple of VERY rough days.  The period following hospitalization is always like starting over.  When Marissa is out of her environment for any reason, her world is turned upside down.    Before any well-meaning, Dr. Spock, Love & Logic, or any other parents who've read a book chime in with great ideas about how I should expose her to more things or let her "cry it out" or anything else, let me remind you that a child with severe brain damage and vision impairment doesn't follow any of the rules.  She does not have the cognitive ability to be reasoned with or to understand what is going to happen to her.  For seven days, Marissa lived in utter fear.  Every voice she heard, every footstep, every touch, every door opening or closing elicited anxiety that you and I cannot imagine.  For seven days she was poked and prodded and felt pain.  For seven days, she was held and rocked and sung to and played with every waking moment.  Basically, when she's in the hospital, I try to keep her calm enough to:  1. heal and 2. not hurt herself more.  When we come home, her world is turned upside down again.  We have to transition back to the sounds, activities, and routines of home life.  We have to transition back to her not being held and catered to 24 hours a day.  She HAS to get back to the point of being able to sit in her chair or her jumper for short spurts and be happy about it.  What this means is that often for days to sometimes weeks, there is screaming and lots of it.   She is so angry and it hurts.  She screams her high-pitched, toe-curling, neuro scream constantly; she bangs her head, hits her face, bites, and gags herself with her fingers.  I do what I can to calm her and keep her safe, but she has to work through this difficult time and it is so hard!!

Sunday, April 10, 2011

We're Outta Here!!

Adios, AFCH!  Once again, thank you for another seven days of superior care!  We love you, but with all do respect, we hope not to see you again for a very, very long time!!

Saturday, April 9, 2011

Support a Great Cause

I Support Adoptions is an incredible organization run by an incredible woman!  Please consider popping over to support their April Spring Basket Raffle.  It's only $5 and you get 3 chances to win.

Thursday, April 7, 2011

Out of Surgery

Marissa's surgery went well.  It was as smooth as it could've possibly been.  She seems very sore, but is currently resting comfortably.  The next 24 hours are crucial in terms of determining whether there are any issues with the shunt function or gall bladder placement, but beyond that it may take a few weeks or so to know for certain whether it is a success or not.  Thanks for all the well wishes and prayers.

It's not all gloom and doom favorite meal!
I realize my posts of late have been pretty dreary and whiny.  Last night, after 20 hours of not eating, Marissa was pretty tickled when her hot dogs and mac&cheese arrived!  She drank a bottle, ate a huge supper, drank another bottle with her meds and crashed by 7:15p.m.  I didn't hear a peep out of her until 6:00 this morning.  Surgery is scheduled for 1:30 today.  Fingers crossed that it will actually happen.

Wednesday, April 6, 2011


It's looking unlikely that surgery will occur today because the general surgeon has a huge case that was intended to start right after Marissa's.  The neurosurgeon needed to take a kiddo down who was much more critical than Marissa.  He will be out of town the end of this week.  That said, we are in limbo and have no idea what will happen.  On the bright side (because one MUST always find one, right?), being bumped means that Marissa is, for once, not the sickest kid here.  We have bumped many of children out of the regularly scheduled surgical slots in the past.  Marissa's agitation has re-escalated and she has given herself two bloody lips already today.  She is banging her head again and biting (me) incessantly.  (I may have to get a pair of those K-9 cop training sleeves to wear for the duration of our stay because my forearms are not looking pretty)!  Hopefully we can get this done sooner than later.

UPDATE:  No surgery today - try again for tomorrow afternoon.  If that doesn't work out then we're kind of screwed. :(

Tuesday, April 5, 2011

We're baaaack.......

Miss Marissa decided  last Friday's surgery postponement did not fit her schedule.  She became increasingly irritable over the weekend to the point of being totally unmanageable by Monday morning.  She was to the point where she was causing harm to herself (and me) from all of the head banging, biting, and hitting.  A quick brain MRI revealed decreased ventricular size, however, a shunt tap revealed increased pressures.  They removed about 30cc of CSF and after a long nap, she awoke a changed girl.  She has been pleasant, happy, giggly ever since.  Nonetheless, she was admitted yesterday and surgery is scheduled for tomorrow morning to convert her VP shunt to a VGB shunt.  There is currently no plan to do anything with the three cranial shunts as they appear to be working fine (THANK GOODNESS)!  Hopefully they can get in, place the catheter in her very lovely-looking gall bladder and get out quickly without incident.  We were hoping her ENT would be able to participate in this surgery as she needs to have her airway explored again with another possible dilation and cyst removal, but he's not sure if the timing is going to work out with his other surgical cases tomorrow morning.  We'll have to wait and see.

Friday, April 1, 2011


Inspired by several blog buddies who've done this, I've decided to launch a raffle to support 147 Million Orphans and B&H's Adoption Fund.  I will run it for two weeks, ending on April 14th.  The winner will be chosen at random (using and notified here via blog post announcement and email (if provided).  So, blog readers and Facebook friends, PLEASE help us out by spreading the word so we can get LOTS and LOTS of entries! 

How it works:

1.  Donate to B&H's adoption fund via the Chip In Widget on the sidebar.  Any amount is much appreciated.
2.  Leave a comment here letting me know that you've done this (preferred); or, if you'd rather, email me at
3.  Post a link to this raffle to your blog page or Facebook status (not required, but VERY much appreciated)
The first place drawing winner will win this awesome 147 Million Orphans Fancy Feed Baseball shirt (in your size, of course).

The second place drawing winner will win this beautiful, handmade 147 Million Orphans Magazine Necklace.

Good Luck!!