Updates

The Princess is resting fairly comfortably today so I'll take this opportunity to try to play catch up.  Surgery yesterday was the "smoothest complicated case he's had in a long time."  A good thing to hear from your neurosurgeon, for sure!  Marissa had loculated third and fourth ventricles, which were fenestrated - yet again; the shunt catheter draining her right lateral horn was embedded in tissue rendering it essentially non-functional, it was 'cleaned up'; and her third ventriculostomy had once again closed itself off, so it was reopened.  It appears that she may be having issues with intermittent overdrainage which causes her ventricles to collapse and tissue to "stick" to the catheters and close up the aqueduct.  Her neurosurgeon decided it was time for a second valve so he went ahead and installed one in her distal shunt tubing.  It was a big procedure with lots accomplished!  She had a pretty good night - minimal cardiac issues and her biggest complaint today seems to be a sore throat.  Certainly she wasn't quite ready to be intubated again this soon after her tonsillectomy.  We're hoping to bust outta here later this afternoon.

In other news, we've had a lot of house guests this summer. We've had Frogly, Snakely (twice), Toadly, Spiderly, Turtlely, are you seeing a trend here, and Billy the Butterfly.  We have a pretty sweet system actually.  Our 'friends' come to visit us at Camp Fenske for a few days, enjoy their little vacation and then return to their families.  Esen gets to enjoy them, gets to learn a little about them, understands the importance of respecting nature, and I don't have to clean stinky animal cages or deal with the explaining the unfortunate demise of said animals.

The boys had a great camp out a few weeks ago and Esen has been begging to do it again.  Perhaps this weekend, Daddy?  It's only going to be 96 and humid with a heat index of 105+!



Happy, happy girl for a few days last week!



Marissa is loving all the time we get to spend outside.  I've had her in the little pool once and she really enjoyed splashing around.  It'll be a while now with the new incisions before we can do it again.  She loves her swing, watching her brother do acrobatics on his bike and even just hanging out in her wheelchair breathing in the fresh air.  Esen, of course, would rather be outside than anywhere else.  He is always  busy with bike riding, mud-mess-making, chalk drawing, water spraying, running in circles or some other craziness!



I've been running again - or wogging as Kevin lovingly refers to it.  My alarm goes off at 4:45 every morning (except one weekend day) and I get out before the house wakes up.  It's been well over 15 years since I've done any serious running so it's going to take some time, but I'm working on it.  I'm doing the Cool Running Couch to 5K Running Plan and it's amazing how...dare I say...easy it's been.  Four weeks ago I couldn't jog for 30 seconds and now I'm comfortably doing the intervals in week 4 and even pushing myself on some longer weekend routes.  Sadly, I've gained 2 pounds (yeah, it's muscle, no doubt), but hopefully, the 50 I need to lose will fall off on the roadside somewhere along the way! 

Surgery

Just a quick post to let my Blogger friends know that Marissa is in surgery.  She has an obstruction of her third and fourth ventricles.  All three of her shunts appear to be functioning well, but the aquaduct is occluded.  This is particularly dangerous because obstruction of the fourth ventricle could lead to a build up of fluid that would place pressure on her brain stem.  For those who are not well-versed on neuro anatomy,  your brain stem controls all of your basic life functions (breathing, heart beating, etc.).  She was scheduled for a STEALTH CT at noon and like a good girl she fell asleep promptly at 11:45.  STEALTH requires precise scanning with absolutely no movement whatsoever so she was to be sedated.  Her surgeon will use this "map" during the surgery.  We decided to give it a shot without sedation.  We wheeled her all the way down to radiology, placed her in the scanner and did the scan with nothing.  She never made a peep or even twitched!  Unfortunately, surgery was delayed until about 4:00, so she's still in the OR.  He's expecting it to take a couple of hours.  We're not sure exactly what he'll do, what her outcome will be or how long we'll be here.  I'll update as soon as I can.  Thank you for keeping our sweet baby in your thoughts.

Birthday Wishes Come True!

A lot of emotions all before 9:00 a.m.!!  We were incredibly blessed to have been able to orchestrate a little birthday party for Kamila and her group at the orphanage thanks to our wonderful, big-hearted translator. 

She eats cake like her Mama!!

The greatest gift of all came in the form of a 27 minute Skype call with the Birthday Girl herself.  I can't express how amazing it was to see her in real time.  Pictures are one thing, but to see someone move, talk, wave, smile, and interact is so much different.  At first, she was a little shocked and unsure.  Heck, she's never seen a television, computer, telephone or any other electronic device so it was probably a little strange and hard to comprehend, but she gave us some waves and smiles.  We have sent over two separate photo books (as our family has changed) so she has at least seen us before in pictures.  It was incredible to watch her - I probably could've just stared at her all day.  I keep replaying it in my mind - the way she moves her mouth when she chews, the way her tongue comes out to the left side only, the way she twists her wrist kind of silly when she waves, the little bounce in her step when she walks.  She is such a unique little person, with her own sense of self.   She showed us her ball, ate a cracker, blew some kisses and even called me "Mama" a couple of times - yeah, my heart is still melting.  So, on this, her third birthday, a little girl who has known nothing but institutional life, knows she has an actual family who loves her! 


Esen and Kamila "discussing" their 'bouncy balls'



Sweet, sweet girl!

It was an emotional, bittersweet day for us.  On one hand, I feel relief to have seen her and know that she is as healthy and happy as she can be considering her circumstances.  I will cherish those 27 minutes that we all got to share each other.  On the other hand, I fear that we've left her wondering when we're ever going to come for her.  If months go by and we still don't, will she think we've forgotten about her? I hope she feels special and loved, I hope that the US and Kyrgyz Governments can set aside their bureaucratic BS and let her come home.

Astounding

Can you believe that 25% of Americans still believe HIV can be contracted by sharing a drinking glass?  I was shocked to read that statistic from the newest report released based on The Kaiser Family Foundation’s 2011 Survey of Americans on HIV/AIDS.  Perhaps I am the one who is a bit naive in thinking that we've progressed beyond the ignorance surrounding this manageable, chronic medical condition.  I do understand that there is a stigma attached to HIV/AIDS.  I understand that there likely always will be and the only way to combat that is through education, advocacy and spreading the truth.  Please take 4 minutes out of your day to review this extraordinary video from Project Hopeful and please pass it along to family and friends. 

2 years, 11 months, 11 days

That's how long we've been waiting for Kamila to come home.  That's how long we've been kept separated from our daughter.  Can you imagine?  Not a day has gone by that I haven't thought of her...ached for her to be here.  Her birthday is this Saturday.  She'll be three.  She'll be spending it alone, without her family, again. 

These pictures are from one of her group-mates birthday parties last week.  One thing is for sure - these kiddos are eating A LOT of cake lately!!  And yes, the clippers were located - the party resembled that of a new recruit boot camp luncheon.

We're hoping our translator is successful in getting into the orphanage this coming Saturday to put on a little celebration for Kamila and her group.

So Humbled

We had our big fundraising event last night.  I think I walked away more humbled and grateful than I have ever been in my life.  This process has been hard, it always is.  Adoption is not an easy journey, and fundraising is one of the hardest parts.  So many people don't understand or don't agree with what we are doing and when those people happen to be people who were close to you or people who you thought were friends, it makes it even harder.  For one night, I was able to forget about the naysayers and just enjoy feeling wrapped up by the support of the people who chose to be there for us. 

We are unbelievably blessed to have the unwavering support of some true friends.  You know the ones, right?  I'm talking the friends that will be there for you anytime day or night, no matter what.  They will support you, drop everything to help you, respect you even if they don't always agree with you and never, ever let you down!  It is because of these friends that this event was possible and that it was such a success.  We love you guys!

I was also reminded yet again that my work 'family' is incredible.  Despite the fact that I no longer work full-time, several coworkers, work friends, and even former managers made an appearance and showed us tons of support.  It really meant a lot to me to look around that room and see their faces.

The music was incredible - Thank You Mark Croft!!   The food was great, drinks refreshing and everyone seemed to have a great time. 

We got a lot of questions and comments about the kids and the adoption process.  It was nice to be able to freely share their stories and their pictures with people since it is something I'm not at liberty to do here. 

Thank you again to everyone who joined us - it was a fun night and we did, indeed make strides toward our goal.

Project Hopeful Spreads Truth Once Again

PLEASE take some time to stop over to Project Hopeful and read this extremely insightful post on The Stigma Double Standard.  I can't tell you how many times I've been chastised for publicly discussing my childrens' special needs or what goes on in our family and I'm not just talking HIV here.  There are far too many ignorant people out there and each time someone tells me to "sit down and shut up" it gives me greater drive to advocate and educate!  If we don't talk about things, the ignorance just spreads!  I for one want my kids to grow up in a world of tolerance and acceptance.  I want them to grow up being proud of themselves, their histories, their family, their uniqueness and their strength.  I want them to know that I am not ashamed of them.  I'm so grateful for organizations like Project Hopeful that make it their mission to spread the truth.

Surgery Update

For my readers who do not follow our adventures on Facebook, I am sorry for the delayed post.  Marissa's tonsillectomy/adenoidectomy, bronchoscopy/laryngoscopy, and ERG was yesterday.  She did as well as could be expected.  Her tonsils were 3 out of 4, adenoids 80% occluded.  Her airway continues to be stable with no new cysts and no need for additional dilation - great news!  Her eye exam and ERG was completely normal - also great news!  It was a lot for her little body to handle, that's for certain.  It took her an extraordinary amount of time to wake from surgery and then she slept most of the day.  When she did finally wake, it was with a vengeance.  She was quite violent all afternoon and overnight - thrashing around, biting, pinching, pulling her hair, and head banging.  She would pass out for brief periods, but then wake up again.  She wouldn't swallow at all and the mucous build-up was hard to keep on top of since they don't allow suction after a tonsillectomy.  As she's gotten older, it's also gotten much more difficult to be here.  She panics with every sound, every voice, every touch and unfortunately, sometimes we have nurses who don't know her and just aren't sensitive to her situation or respect her need for space.

This morning, it took about an hour and a half for me to get her meds into her and then 2oz of formula via syringe.  She has kept it all down, though.  After a wash-up and pj change, I got her up in her wheelchair and offered her some pudding.  She ate a few spoonfuls and seemed more content.  I think we'll be able to get out of here today.  I know they want to see her drinking better, but I know that she'll do a lot better at home.

Ahhhh...summer

We have the best backyard!

Off for a bike ride!

Can't wait to start eating out of the garden!

Super hot day...super cool dude!

Being this cute sure is exhausting!

Silliness!

Happy, happy girl!

Look What We Got...

It took a year and a half, but I finally found someone willing to give me a copy of Marissa's wee footprints!  Yes, that is a regular, small paperclip and a bobby-pin used for reference. 

Can you believe those cute, little toes?!

I also requested a copy of her medical records from her birth hospital.  She was only there a brief time before being transferred to CHNOLA.  The woman was kind enough to call me BEFORE packaging them up and sending them off with the bill to let me know there would be well over 400-500 pages (at .50 a page) and was I sure I needed them all.  THANK YOU for having the courtesy to call because no, I don't really NEED them all, I was merely curious.  What I was truly interested in was her first few days of life so she's kindly sending those to me - a much more manageable cost.  Those Louisiana ladies are so dang friendly!!

June 1st was International Children's Day in Kyrgyzstan and the Bishkek Baby House kids really whooped it up!  Our beautiful girl is stunning in her white dress, wouldn't you agree?  There were bananas, gifts for all of the children, performances by local groups and musicians and over 350 photos taken!  A huge thank you to everyone who was  involved in making this happen!

Redneck?

Hey, we are in the Midwest.....

What happens when you have a super tall, yet super thin kiddo who needs one size for his height but a much, much smaller size for his weight?  We live by adjustable waist pants, but in some cases (i.e., pajamas) it isn't always possible.  Add to that the recent diaper loss - YES, my five year old is POTTY TRAINED - and we are left with pants that do not, under any circumstance, stay up!

Thanks, Daddy, for this quick and ingenious fix!

There has been a little bit of drama surrounding Marissa's central line over the past few weeks.  It started with a simple clot that was seemingly easily cleared with a TPA indwell.  Unfortunately, that lasted about a day.  Once the weather started to warm up and she started to wear less clothing, Marissa decided central line pulling would make for a nice play activity.  As a result, I did find it unclamped and pulled from it's dressing on multiple occasions.  Certainly, this played a role in the resulting clots.  We resolved the pulling issue by creating Hickman Fort Knox  - which has her looking suspiciously like a very tasty, tender rump roast!  Our last ditch effort last week was a third TPA indwell followed by a hydrochloric acid indwell.  Sadly, it too, was unsuccessful.  I'm dreading tomorrow because Marissa is scheduled for a pre-op exam and labs and currently her line is unable to be used for blood collection.  No one, including the venous access team or any of the peds anesthesiologists have been able to get venous access on her in any of their past attempts which is why the line was kept.  Oh, the pre-op?  Well, seems Miss Marissa has grown tired of being all fancy schmancy "I have to have brain surgery every month" and is going to have a very routine, very normal-kid sort of surgery.  She is scheduled to have a tonsillectomy along with her ERG procedure on June 13th.   Her tonsils have remained huge since about January and her ENT said it's now reasonable to remove them especially since she is symptomatic.  I hope it has a positive effect on the constant self-gagging she engages in.

I've not shared any photos of B & H because we're simply not allowed.  I figure you don't really want to just see feet - it's so not fun to look at feet, but this picture pretty much sums up the wait.  They love each other - they are siblings in the true sense of the word and they are so waiting to join their family!