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! 

All About Esen

This week school wraps up for my little monkey.  I find it so hard to believe that in a few short months he'll be in Kindergarten!  This has really been a great school year for Esen.  I'll admit, I had no idea what to expect when it started.  Then, when his teacher left just a few weeks in, I was worried it was going to be a really rocky year.  He did great, though, overall and we not only made it through, but he really showed a lot of growth.  Esen is a tough nut to crack sometimes.  He's so darn intelligent and it's difficult at times not to expect too much out of him.  It's necessary to constantly remind not only ourselves, but others working with him that while part of his brain is functioning years beyond his chronological age, there are damaged parts that hold him back in other areas.  I can see how it would be so easy for a teacher to lose patience with him or to just write him off as "naughty." 

Our society wants so badly to categorize and label our children.  Fortunately (or unfortunately depending on who you talk to), Esen doesn't fit any sort of mold.  There have been diagnoses casually tossed around for years - Neurologic damage, Sensory Integration Disorder, ADHD, Cerebral Palsy, Failure to Thrive, Reactive Attachment Disorder, Aspergers, and the list goes on.  While he fits some of the criteria for all of the above, he doesn't truly fit the diagnostic picture for every one of them.  For most parents and teachers, scenarios like this can cause a lot of stress.  Most parents want their kids fixed.  Most parents want to be able to make excuses for their kids and give them a pill.  We're a little different that way, perhaps.  We have been pushed on multiple occasions into 'exploring' medication for Esen.  We have yet to succumb to the pressure.  We have managed his behaviors through therapy techniques and his new IEP and we plan to continue.  In fact, we will fight to continue.  I have seen far too many children, especially little boys, labeled and medicated instead of provided with therapy and resources.  I have seen their little personalities disappear and their little spirits vanish.  Little children should not be turned into walking zombies nor should they be medicated into submission because it is more convenient for parents and teachers or simply because we want them to behave in a more socially acceptable manner.  I'm not saying there is NO place for medication, I'm just saying it should be a last resort, not a first line choice. 

A huge reason Esen has had a successful start to his school career is definitely his 4K teacher.  Once the permanent teacher came on board, everything fell into place.  We were thrilled to learn that the new hire was actually one of Esen's former Birth-to-Three educators.  He has gone so far above and beyond our expectations over the past eight months.  He has shown compassion, patience and respect for Esen.  He has helped to foster Esen's spirit and learning and has never once made us feel like we needed to make him conform.  I get the feeling that perhaps Mr. J was a little like Esen as a child - highly intelligent, a little rambunctious, perhaps a little quirky.  Whatever the reason, he seemed to take the time to really try and understand Esen and that is what makes a great teacher!  He went to bat for us, stood up for Esen's rights and was instrumental in getting Esen's IEP established.  For that, I will always be grateful.  I wish he could go on with us to Kindergarten because we will so miss him!

I am so excited to see what the future holds for my crazy oldest kiddo!  He is so remarkable in so many ways.  I learn something new from him every day and each day is definitely a new adventure. 

Updates

Marissa has had a great last week.  I tend to think it has something to do with the recent increase in one of her seizure medications.  Her last EEG continued to show a lot of sub-clinical seizure activity, increased generalized "chaos", and hypsarrhythmia - the key indicator of Infantile Spasms.  No doubt, much of her irritability has been due to seizure activity.  We see neurology today to discuss what happens next.  It's disappointing to say the least that less than six months ago she had her first near normal EEG and now we're pretty much back to where we started. 
We're also making a visit to Outpatient Treatment today for a line indwell.  We flush her Hickman daily with Heparin to keep it patent and every three days when I replace her Safe-site, I draw from it to make sure it's still drawing well.  Unfortunately, it stopped drawing last week.  Probably, there's a little clot flopping around right at the catheter tip that's allowing flush to go in, but no blood to come out.  Considering she's had this line for 16 months, we're darn lucky, since they don't usually have that long of a life, but I'm still hoping it can be saved.  Otherwise, we're looking at a replacement.  She continues to have absolutely zero venous access.  Every anesthesiologist and the venous access team has been unsuccessful in their attempts which is why they opted not to remove her line over the winter.  We don't want to be stuck in an emergent situation with no way to gain access for blood draws, anesthesia, fluids, or IV medications. 

Thanks to her new Hugga-bebe, Marissa is enjoying all sorts of new freedoms!  She can actually jump in her Jumperoo - SAFELY and swing in bucket swings at the park.  She still fatigues easily and still throws her head really violently so it's impossible to have her in any sort of seat that doesn't offer full back, neck and head support.  But, with the Hugga-bebe, she's protected and really feels quite proud of herself as you can see from the video (sorry about the quality - my little camera doesn't do such a great job).


Esen is gearing up for the last day of 4K on May 26th!  We went to Kindergarten orientation the week before last and it was crazy to imagine him going there next Fall.  He seems excited, though.  We're going to enroll him in Summer School - they're having a Kindergarten Kick-off class in July which I think will be really great for him.  I'm so looking forward to spending the next few months hanging out with my little guy before he goes off....sniff....to school....sniff....forever....sniff. :(

Spring, Walking, A Star and Hope

Spring has finally officially sprung around here - THANK GOODNESS!  I can't stand the in between time.  Winter just drags on and on and then we always seem to get stuck in this pattern of warm then cold again and I find myself cranky.

On Saturday we did the March of Dimes March for Babies and thankfully, the weather held out.  It was supposed to be rainy and windy, but we got some peaks of sunshine and stayed dry!  Since the weather was so great, we opted for the "long" (4 mile) route.  The kids did great!  It's been really hard to count on Marissa to tolerate anything lately much less a full day away from home in a high-stim sort of environment.  Afterward, we headed to my parents and had an impromptu Mother's Day Celebration.





Last week, Esen was named Star Student of the Week.  He was responsible for gathering up 8-12 things that are important to him for a bulletin board.  Then, he shared stories about himself during circle time each day.  

His items included: 

A Kyrgyz Flag
A family picture
A World Map
A picture of him playing with his train set
His Big Brother Button
A pocket calendar
A family picture
A picture of him "flying" one of Daddy's airplanes

He was so proud!! 

Finally, about 62 or so waiting Kyrgyz mamas got the best Mother's Day present ever in the form of a simple signature this weekend.  President Otunbayeva made good on her public promise to sign the amendments to the newly approved Family Code.  This paves the way for International Adoptions to resume in Kyrgyzstan and for Kamila and all of the other matched and waiting Kyrgyz orphans to finally COME HOME!  I have no doubt we are still have a long road ahead, but this is a huge step and gives me a lot of hope!  I am starting to plan for her third (and hopefully last in an orphanage) party.

How will you show your support?

Today is World AIDS Orphans Day.  Over 16 million children worldwide have lost one or both parents to AIDS.  I am astounded by that figure.  HIV is totally and completely preventable and treatable.  It is considered a manageable, chronic illness.  Some medical professionals go so far as to say it is more easily managed than chronic illnesses such as Diabetes or other non-infectious blood disorders.  People should not be dying of AIDS.  Children should not be orphaned because of this disease. 

Please consider what you can do today to make a difference in the lives of the world's orphans.  If anyone chooses to make a donation to B&H's adoption fund this weekend (via From HIV to Home or Chip-In), we will donate 10% to support the HIV programs within their orphanage.  Remember, they 2 of the 16 million.

Threes

Shunts.  I have a love/hate relationship with them and no doubt, so does Marissa.  Most importantly, they keep my precious girl alive!  They are necessary - all three of them! 

That said, three hemorrhages + three shunts + over 30 surgeries = triple trouble.  Thursday, Marissa had a "routine" follow-up with Neurosurgery.  Rarely is there ever anything routine about any of her follow ups with any specialty.  I went into the appointment figuring there'd be discussion about next steps, other options, and possibly...gasp...an admission to the hospital.  The doc decided to tap her shunt - a procedure that involves inserting a needle attached to tubing into one of  her shunt valves.  Marissa has had more shunt taps than I care to count and basically, they suck, but they are extremely informative.  Immediately, I knew we were dealing with an obstruction.  We calmed her down with a few resounding choruses of Twinkle, Twinkle, Little Star and the fluid continued to literally shoot out the top of the tubing.  Basically, they can get a fairly accurate determination of intraventricular pressure based on how far the CSF travels up the tubing.  Because hers was coming out the top, this indicates the pressures are so high they cannot be estimated.  The NP pulled off 30cc's of fluid and sweet Marissa fell asleep during the remainder of the procedure.  Because there was good flow to the valve, it was deemed there was most likely an obstruction in the distal catheter (aka our "new" gall bladder placement).  NOT what I wanted to hear, but so much better than a failing cranial shunt catheter.

Friday, Marissa had a fluoroscopy done on her entire shunt system.  Present were two radiologists, our neurosurgeon, a neurosurgery resident and the general surgeon who placed the gall bladder catheter.  The fluoroscopy was a bit inconclusive.  It appears that the system was patent and fluid was flowing, however, it was flowing slowly and it was definitely "hanging up" in the gall bladder for an extended period of time.  Because Marissa overproduces CSF, this could be causing her high pressures.  Overall, it's funcitoning, but not as solidly as we hoped it would.  We decided to give her the weekend and reassess on Monday.

Monday morning brought yet another shunt tap, only this time we hooked her up to a manometer to get a true intracranial pressure reading.  It is highly likely that her pressures greatly vary throughout the day, but as long as she came in under 25, she would be given the great Neurosurgery blessing to go home and wait and see.  She measured 20!  No hospital, no surgery, no new meds.

The downside to all of this is that we are no closer to an answer for Marissa's mood.  She continues to vacillate between extremely happy (bordering on manic) to violent and it changes like a switch is flipped.   She is getting bigger and my fear is that she may actually significantly injure herself.  She is becoming much more difficult to manage at times and it is nearly impossible at times to take her anywhere.  I find myself sad for her and frustrated much of the time.  I know this is just another hurdle we must overcome.  I know my frustration is minuscule compared to what Marissa must feel on a daily basis.  I know I have no right to complain.  I just hope we can find some help for her.

Swingin'

Our new therapy swing has been installed (thanks to my Dad and Hubby!), so yes, we have a swing hanging from the ceiling in our living room.  Yeah, we're the coolest parents around - we pretty much rock!

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!!

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!