Flashback Friday

My Hair - it's a constant source of frustration for me....always has been.  It's been long, short, straight, curly.  It's been brown, blonde, black, red, multi-colored.  It's been highlighted, lowlighted, chemically processed and damaged beyond repair at times.  For quite some time, I've enjoyed it short.  I went nearly completely gray several years back and the constant salon coloring and cutting became too expensive and too time-consuming so I just let it grow and took to coloring at home.  Now, I'm sick and tired of it again and I need professional help!! So.....what's it gonna be - help me out or I just might do something really drastic! 

(Please never mind that I have aged A LOT and lost and gained the same 20+ lbs MANY times over the years)

Flashback Friday

One year ago this weekend I boarded a plane...

And soon after, we went from this...

 To this...

Our home is full, our hearts are even fuller.  Though we are challenged some days, we are grateful everyday. We are still learning and growing.  I can't believe it's been a year already.  I can't wait to see what the next year brings!

Have a Happy Friday and an Amazing Weekend!

Flashback Friday

Winter has me down - waaaay down.  I'm so sick of the snow and the cold and the driving....blech.  I dug back into winters past..........who could be crabby looking at this cuteness from 2008?

Happy Friday - enjoy your weekend!!

After FIVE, long years, it's hard to get too excited, but we are preparing for the doors in Kyrgyzstan to open once again.  Hope is never lost completely.  It can't be - there's a little girl there who depends us and frankly, if I may be completely honest, I depend on her.  You see, my heart isn't whole without her.  I love my kids, ALL of them and yes, I am happy with "the ones I have," but she is mine, too.  She is my daughter and I can't stop fighting for her.  We have reason again to be hopeful and that means getting our ducks in a row, getting our paperwork updated and raising funds so that we can storm that little pancreas-shaped country at a moment's notice and get.her.out!

A lot of people believe we should've given up years ago.  A lot of people are tired of hearing about it.  Some are no doubt unbelievers.  I can't say that I blame them.  BUT, for those of you who have it in you to fight with us and to believe in miracles, there are ways you can help.  Every penny we raise gets her closer to home.  You can check out our fundraising tab for ideas.  You can watch our sidebar as well.  Very soon, there will be something super exciting happening over at Altynai's Legacy Fund so please pop over and catch up with Suzanne.  You can read about many of Kamila's friends who are still waiting and some of her friends who have been lucky enough to make it home already! 

Stay tuned..................

Flashback Friday

For today's Flashback Friday, it seems fitting to focus on the entire past five years.  January marked five years since we began Kamila's adoption.  FIVE.LONG.YEARS.  Incidentally, today, an article was published by David Crary for which I was interviewed.  Here is one of the versions - the one that I think has the nicest photo gallery (be sure to check out the link on the left of the story).

For 5 Years US Families Pursue Kyrgyz Adoptions

Happy Friday - enjoy your weekend!!

 

Flashback Friday

I’m starting a new feature here on my little blog.  I’ve stolen borrowed the idea from my friend, Jessi, whom I highly recommend you visit over at Life with Jack. (But don’t click over yet, because once you do, you’ll be hooked forever – Jackpants couldn’t get any cuter and Jessi is multi-talented)!  Every Friday I’m going jump back in time and revisit something…..anything….could be a time that was fun or sad or life-altering.  Maybe I’ll just post a picture or maybe I’ll feel like writing a lot.  My goal is to at least show up every Friday and post something!

This week, thanks to my dear friend, Jes & her husband Ryan, who are in Ecuador at this very moment adopting their incredibly beautiful daughter, E; I am feeling nostalgic.  I’ve been in contact with them this week about their experiences with E and the bonding process and it’s taking me back to our experiences those first days with each of our children.  It’s crazy how quickly memories fade.  Don't get me wrong, I can still remember every single second, but the ‘hardness’ of it has softened over time.  The drama and the fear that I know I felt in those first minutes, days and weeks isn’t sitting front and center anymore. 

Kamila - July 2008

For those who have adopted children from hard places, children who have experienced trauma, older children, children with medical needs, you know what I’m talking about.   Parenting in general is hard work, but it is compounded when you have to travel to a foreign country to bring home a child who does not speak your language, who is older, perhaps has medical issues, physical pain, emotional issues that stem from years of neglect or abuse; and to be on your own with no family or friends to drop by and help.  You’re also away from the comforts of home while trying to take care of said child who incidentally may want nothing to do with you.  You’re managing all of this after waiting and fighting for years to be with your child.  You’re trying to do what’s best, trying not fail, while trying to manage your own feelings of rejection and exhaustion.  That’s a lot to overcome and it’s hard and it’s painful, but it’s also joyous as you watch your child begin to come out of their shell and grow to trust you and like you; and as the weeks and months go by, actually begin to even love you. 

Esen's Gotcha Day - April 24, 2007

I’ll never forget walking up to Esen’s orphanage that first time.  I was filled with excitement and anticipation until they brought him out.  Then, my instinct was to turn and run.  I was so scared because he looked so sick and so small.  I thought:  “There is no way I can do this.”  Obviously, I didn’t (run, that is) or we wouldn’t be where we are now.  That experience and those feelings made me stronger.   Acknowledging them and allowing myself to be open to the experience opened a whole new world for us.  

Meeting Marissa for the first time - October 31, 2009

Two and half years later when we walked into that New Orleans NICU to meet our fragile, little Noodle, I felt ready for absolutely anything the Universe had to throw at us.  Little did I know the ride we were about to go on, but we have managed and we continue to grow strong.  Some days, I have it all together and things go smoothly and some days I can't tell my you know what from a hole in the ground.  I've learned that it's okay.  I've learned that I am so not Superwoman and that my kids are okay with that.  I've learned that I can screw up and the Earth continues to rotate on it's axis.  

Court Day - December 7, 2011

 I guess my point is, hold on tight, but don't be afraid to let yourself go.  Let yourself feel the the good, bad and ugly feelings.  Let yourself ‘fail’ (you’re probably not actually failing anyway).  I can’t believe how many times over the last 6 years there’s been a little voice in my head that has said “you can’t” or “you’ll never be able to” or “that’s crazy” or “you shouldn’t,”  and we’ve done it anyway.  The fact that we’ve persevered in spite of those voices and the negativity is the only reason all of our children are here.  And, it's the reason we continue to fight for the one who's not. 

Happy Friday - have a great weekend!

Looking Forward

Only a little more than halfway through the month and I’m behind on my New Year’s post.   I’d say I’m right on track! No doubt, 2013 promises to be a year full of surprises, in true Fenske style.   My mantra going into 2013 comes from a necklace that I received for Christmas.  I have long coveted many of the amazing items over at Funky Fish Designs and this one is especially meaningful to me.  It really is the basis for how our little family came to be and continues to thrive.  When the days get long and I feel like I can’t even breathe, I reach up and hold this in my hand and It reminds me where we’ve been, where we’re going and what our family is all about.  It reminds me that this world is so much bigger than little, old me.  It reminds me to be humble, patient and try and live a life of service.

We’re starting out the year with medical issues.  Noodle has developed a pleural effusion.  My first response was “oh shit.”  But, oddly, as I sat and listened to Neurosurgeon Extraordinaire discuss our options, I was strangely calm (he has that effect on me).  I know we are running out of good options.  I know that anything we try is risky and I know that the odds are stacked against us.  Still, she ALWAYS beats them.  She ALWAYS proves everyone wrong.  I feel, to the core of my being that she is going to be okay.  As he talked about our absolute wild card option – you know, the one that you don’t pull until the bitter end , the one where he says “I’ve always wanted to try it” and the one where if it fails, he uses words like “incompatible with life” – I found myself having an out of body experience.  I politely said, we’ll talk about that some other day and I tucked the information away in some file cabinet deep in the recesses of my brain; hopefully never to be used again.  Meanwhile, we keep her comfy and stable and wait for all the surgeons to work out their schedules and pick a date. 

One of my intentions this year (I stopped making 'resolutions' years ago) is to slow down.  I really desperately want to try and focus on not having commitments.  I’ve been really inspired by a couple of other mamas who have taken steps to declutter their lives.  After all, is it critical to attend every single function?  I say not!  I want our kids to be able to just be kids.  I want them to know the value of having time to just BE.  I don’t want to rush through life.  I see too many people doing it and it makes me so sad.  I wonder if they're going to look back someday and be sad that they missed out on simple things.  I want my kids to have time to develop a sense of who they are and what they like and don’t like.  I want them to be individuals and not cookie-cutter kids.  I want them to be able to make decisions for themselves and be creative and know how to play.  Yes, I’m learning to let go and that is hard for me because I am a total control freak.  Yes, I have let them go to school on the rare occasion in weird socks and mis-matched clothes because it is what they wanted to wear.  Builds character, right? 

Another one of my intentions is to reclaim my health.  I have definitely let go of myself in taking care of everyone else.  I was reminded by someone recently that although I do strongly believe that “It’s Not About Me,” sometimes I have to make it about me or I won’t be around to take care of the people who matter to me most.   She was right.  So, I have been diligently making changes and focusing on caring for myself like I care for my little ones.  Hopefully I can shed this extra half of a person I’ve been carrying around and build up some extra energy to keep chasing my little animals around!

We received word just this week that things are once again looking up in Kyrgyzstan.  It’s hard to believe that five years have passed since we signed that first document starting our second adoption from there.  FIVE YEARS!  Two agencies, five dossiers, and tens of thousands of dollars later, Kamila is still waiting for us and we are still waiting for her.  People call us crazy (not so much to our faces anymore), but we made a promise to her and we intend to keep it.  If all goes as planned, she could be home this Spring.  You can check out the Fundraising tab and the sidebar for ways to help if you’re so inclined.  We have a loooong ways to go to reach our goal of what we need to complete her adoption, so your support is greatly appreciated. 

The school year is flying by and I’m amazed at how much the kids are learning.  Esen is a math genius!  He’s obsessed with numbers and is forever quizzing me, which isn’t a good thing considering I barely made it through freshman algebra by the time I graduated High School.  His behavior has improved at school with the addition of some more challenging work, but if he gets bored, it’s hard for him to keep it together.  Hiwot loves everything about school, is a social butterfly and practices her letters and songs religiously.  She has such a strong desire to soak up knowledge and learn everything she can.  She never stops asking questions and never, ever stops talking – which will be her downfall in the classroom!  Bamlak is struggling some and we’re feeling the guilt for pushing him into Kindergarten when he probably should’ve been held back.  It was a tough call, though.  We really did not want he and Hiwot in the same grade and definitely didn’t want to hold her back for 2 years so we took a leap of faith in placing him.  He isn’t as motivated as his siblings and doesn’t seem to have the ability to retain information.  He’s patched into ELL and a Reading program, so we’ll see what the rest of the year brings.  Marissa recently started her EC program and they are coming to her right now since it’s a bit safer than her joining her class.  It’s an opportunity for the teachers and therapists to at least get to know her one-on-one.  With impending surgery, she’ll be taking a break again, but we hope that she’ll at least get to join her class for a bit later this year.

Today, I spent the bulk of my day arranging schedules around surgery, doctor appointments, and therapy appointments.   Marissa is receiving outside Physical, Occupational, Speech, and Craniosacral Therapy; and is going to begin Hyperbaric Oxygen Therapy as soon as we have funding secured.  Esen is going to begin outside Physical and Occupational Therapy next week.  Marissa sees 12 different doctors/specialists; Esen sees 3, Bamlak and Hiwot each see 2.   After I figure that out for a week or two, I plug in the school schedule, work schedules, special activities, then figure out daycare, transport and busing.  I always think I have a really good system until something unforeseen happens to throw a wrench in things, then it all falls apart and I forget something and feel like a big idiot!  I would love to hear others’ management systems.  One of my intentions for this year is to get a little more organized and to communicate better (yes, with you, my dear husband who always feels like I don’t tell him anything – because I probably didn’t and not because I don’t want to, because my brain has probably melted).

I have absolutely no idea where we’re going to end up this year.  I have hopes.  I have intentions.  I have fears.  I try not to let any of those things get in the way of the right now.  I find myself feeling very restless and very small at times.   I feel like I should be doing so much more than I’m doing, but yet, I feel like there aren’t enough hours in the day.  Looking forward, I’m going to try not to look back.  I’m going to try to focus on the minute that I’m in and make the most of every second……

 In the famous words of a very, wise man:

“Live with intention. Walk to the edge. Listen hard. Practice wellness. Play with abandon. Laugh. Choose with no regrets. Appreciate your friends. Continue to learn. Do what you love. Live as if this is all there is.” ~Dr. Seuss

Looking Back......

I’m not sure how to even begin to describe 2012.  We certainly went through a lot of change individually and as a family.  We spent the first couple of months preparing to welcome two new members to our little clan, wondering the whole time what it was going to be like to double our kiddos overnight.  In March, Bamlak and Hiwot came home!  The transition was far from seamless, but in time, everyone settled in and found their niche.  Months later, it was like we had all been together forever. 

In June, we hopped on a plane and travelled 6,000+ miles to Bishkek, where we spent two weeks bonding with our little girl – the little girl who still sits alone in an orphanage 1639 days after we promised to be her parents.  Esen went with us and it was absolutely surreal to take him back to where he was born, to where it all began.  Walking into that orphanage on April 23, 2007, changed the course of our lives forever.  It changed what we thought we knew about what we wanted.  It changed what we thought we were there to do, what we thought our plans were for the future.  It set the wheels in motion.  As bitter as I am sometimes about that country, the government and the whole process in light of what we’ve been through this past 4 ½ years, I have no choice but to be grateful because we have Esen and because all of this has shaped what we’ve become.

2012 also afforded us the opportunity to serve through a Both Hands Project.  It was such an amazing experience (and a lot of work) to see what happens when people come together for the sole purpose of helping another human being.  The outcome was amazing and we raised funds for Kamila’s adoption as well.  I highly recommend anyone out there looking to fundraise for an adoption consider a BothHands Project through Lifesong for Orphans.  It is a life-changing experience not only for the crew, but for the widow being served.

The summer was filled with water fights, scraped knees, new foods to explore and two kiddos who had never even touched bicycles learning to ride two-wheelers!  Lord help me, I’ve got three dare-devils under the age of 7!  The boys had a blast riding up and down the street while Hiwot enjoyed peddling around the driveway.  I couldn't believe it when they took off since in March they couldn't even pedal tricycles!  We stuck pretty close to home over the summer and really just focused on getting to know one another and having fun.  

2012 wouldn’t have been complete without some hospital drama.  While I’d like to say that I’m going to forget it and put it in the past, but a mama can never really do that.  Three months in the hospital, multiple surgeries, life-threatening infections, seizures, discussions about your child dying, respiratory arrest, those are things that when I close my eyes at night are there as if they are happening right now.   The end of 2012 brought a new, troubling diagnosis that we haven’t even begun to peel the layers off of yet.   Still, I have hope because I have to.  I can’t give up because my heart won’t let me.

We were so blessed to all be home together for the Holidays.  Christmas was nice and quiet and for the New Year, we decided to take the kids to a mini-indoor waterpark in Wisconsin Dells.  They had so much fun (as did the grown-ups)!

I have no idea what 2013 holds for us.  I have some wishes and I have some intentions (I don’t do resolutions), but I know better than to make plans. 

Up next……Looking Forward

I Am That Mom...

You know the one…the one you might have said you’d never be.  I know I said it a million times in my “old life”.  Maybe I’m the one you looked at in disgust yesterday or shook your head at or pitied last week.

…the one who is carrying around the child with no socks and no hat in the twenty degree weather

…the one who’s kid doesn’t seem to follow the traditional course

…the one who wears yoga pants out in public ALL.DAY.LONG.

…the one who may or may not have washed her hair this morning

…the one who sent her kids to school on a breakfast of pop tarts and oranges

…the one who used to be perpetually early for everything, but now is late to every single appointment

…the one who forgets lunches and special school dress up days

…the one who has never taken her family on a real vacation

I was pretty sure I was going to be the mom who was always put together, whose children were always dressed perfectly and sent off to school with bellies full of a delicious, nutritious, hot breakfast.  I was pretty sure I would serve on the PTO and volunteer in the classroom, accompanying my children on every field trip and spend hours at night discussing the day’s events. 

What happened?

Life happened. 

I have a hard time convincing myself most days that I’m not a total failure.  Balance is really, really hard, but for moms of kiddos with special needs, I think it is compounded.  There are doctors, specialists, therapists, behavioral issues, medications, and then the modifications you need to make to general life to accommodate kids from hard places.  I’m not complaining and before people jump down my throat and feel the need to remind me that I chose this life, shut it – I know full well I chose it and I don’t regret it for a second. 

You see, for all the things that I may not be as a mom, I am so much more as a woman and as a human being because of my children and what they have taught me to be.  This past six years I have  totally transformed from the person I was into the person I am right now and the person that I am continuing to grow into.  I truly owe them my life! 

That child with no socks and no hat – she’s my daughter who has severe brain damage.  She’s not supposed to alive.  She’s not supposed to be able to interact or move her limbs, or make sounds.  She’s not supposed to be able to eat or drink, much less have an opinion about anything.  I’ll tell you something – girl’s got some serious opinions; about a lot things!  For one, she hates socks and she hates anything on her head.  When I put them on her – she immediately takes them off.  That’s a pretty huge accomplishment for her and we celebrate it!  If I put them back on it also sends her into a rage and frankly, trying to carry a 35lb head-banging, biting, giant noodle and getting her strapped into a carseat or wheelchair for the 5 seconds she’ll be outside isn’t worth the tantrum so sometimes she wins the battle.

The kid who some think is a little off-course – he’s my oldest son and he is amazing!  I’ve never met another human being like him.  I’ve yet to meet anyone who can fully explain him or the way his brain works.  As he grows, he seems to be more in touch with how it works, though.  I don’t know that anyone will ever know or be able to understand the amount of damage that he suffered, but for him to have overcome and to be where he is today is truly a miracle.  He struggles – A LOT!  He frustrates me, yes.  He also intrigues me and he makes me laugh and he makes my heart soar.  I just can’t wait to see what he’s going to do.

The yoga pants – they were cleanish and I found them, and my butt’s not hanging out – enough said.

My kids eat pop tarts and dammit – they LOVE ‘em!!

I’m late – AGAIN – I’m sorry I messed up your schedule.  But, before you get upset, you should know that I might’ve been dealing with a major poopsplosion in a parking lot somewhere; perhaps my kid had a seizure or threw up, or pulled out her G-tube.  I might’ve been on email desperately trying to match up an orphan with a family; I might’ve been dropping off a hot cup of coffee to a homeless person as a random act of kindness; I might’ve been ordering flowers for a friend who lost her baby; so cut me some slack.  I’m a good person trying to do some good things, trying to make this world a better place because my heart has been stretched to the limit.

The thing is, I try so hard every day and I’m pretty sure my kids see it.  When I fail I let them know and I say I’m sorry.  It seems to be rubbing off.  They are learning grace.  They are learning it’s okay to be imperfect.  They are learning that the world is not always a fair place and that it’s more important to help others than to have things.  They are learning that people matter – isn’t that what it’s all about?  I still have a long ways to go – I am my own biggest critic.  I am hard on myself, always have been.  This next year I really want to take a step back and slow down. 

I am that mom….

…the one who loves her family fiercely

…the one who will protect her kids and fight for them with total disregard for your rules

…the one who is at peace with the fact that others have chosen to walk away rather than accept us

…the one who has been around the world, who has seen true need and true suffering, who has held children that will die alone and who has allowed herself to be changed by it

…the one who has watched her own children suffer unimaginable emotional and physical pain

...the one who will never take a single second for granted

Hope

I apologize for my absence and my silence.  After Marissa's last surgery, things were a bit of a whirlwind.  She recovered quite well and although the surgery didn't go as we had planned or hoped (when does it ever), we have absolutely nothing to complain about right now.  On October 20th, we came H.O.M.E.!!

Marissa is rounding out her last week of IV antibiotic infusions and preparing for a minor procedure next Monday.  She'll be having her G-tube converted to a GJ-tube because she's not been tolerating G-feedings and also will have a pH probe inserted for a 24 hour period of monitoring.  Other than little upper respiratory infection last week that her brothers and sister thoughtfully shared with her, she has been doing fairly well at home.  We have no idea what the future holds and I admit I have a very hard time not looking ahead.  We're trying to just live in the moment and enjoy every second we have.  Right now, we are choosing hope over fear. 

All the kids were able to go trick-or-treating together for Halloween.  All that candy was quite exciting for Bam and Hiwot! 

Last weekend, we were blessed to have our friend, Janiece come and take some family pictures and they turned out so beautifully!

I promise to update very soon!!

Nerves



Yup - this about sums it up.  My stomach is in knots, I've had a headache for four days, I can't think straight, and I crashed my van into a pole yesterday.......(I'll save that for another post).
Tomorrow, the best-of-the-best surgical minds will come together to try and create a functioning shunt system for my little Noodle. 

A month or so ago, we had a lot of reasons to believe we'd never make it to this point.  We were "prepared" for the fact that it might prove to be impossible, that she would not survive.  We have tried to live day-to-day and not focus on the end of the journey, whatever 'the end' might be.

Now, here we are - at this pivotal moment.  It feels like there is so much riding on this one surgery; probably because there is. There is no room for error.  She cannot withstand more malfunctions, additional surgeries, more infections, more insult to her brain.  I have no control over this situation and I hate it!  Tomorrow, the OR team will see a side of me that they don't usually see.  I usually hold it together when I leave her (at least until I'm alone).  We have our routine of singing songs until she's asleep.  I am strong and optimistic.  Hell, after 46 surgeries, 46 goodbye kisses, 46 times walking out, 46 times looking back and saying "take care of my girl;" I have to be, right?  Tomorrow - I will cry like a baby.  I will have a very hard time walking out, leaving her behind.

Noodle

Where do I begin. I have started this post no less than ten times and in my exhausted state, quit each time. Partly, I simply can't accurately recall the exact events of the past several months, but mostly, I just plain don't have the energy or desire to lay it all out and relive it.  Doing that means I have to face it - again - and that it makes it real. 

Reality sucks! 

Sometimes I just want butterflies and rainbows and the last three months have been pretty dark. 

In mid-July, we found ourselves in and out of the clinics and ended up visiting our friends over at MRI and Ultrasound for a suspected shunt malfunction.  MRI confirmed a slight dilation of one of Miss Noodle's ventricles so her neurosurgeon opted to revise her shunts.  The revision went fine, but recovery did not.  She came out of surgery very rough.  Hours passed and she did not improve.  We transferred to the PICU, she was administered some sedation for a CT scan and shortly after we returned to the PICU, she suffered respiratory arrest.  Prior to the arrest, she had been awake and comfortable.  The 20 minutes that followed can only be described as a living nightmare.  This is the second time in the past 3 years that I stood by and watched as a team of no less than 20 people fought to save my daughter's life.  In those moments, I would've sold my soul to the devil to ensure that she would survive.  Marissa was intubated and stabilized on a ventilator before I, myself, began to breathe again.

In the days that followed, no one really was able to come up with a great reason for her arrest.  She was weaned off the vent, extubated and continued to do quite well.  We went home about a week later.

Unfortunately, we returned just a few days later and Marissa was diagnosed with a shunt infection.  Her shunts were externalized for two weeks, during which time she was treated with IV antibiotics and then shunts were internalized.  We went home again, only to return a couple of days later when she leaked CSF out of her incision sites.  The leaks were controlled, shunts revised, spent another week - went home.

Are you noting a trend at all?

A few days later, Marissa went completely blind - yup - malfunction number.....who am I kidding.....I don't know.  This was a Sunday and she wound up in surgery late Sunday night.  Dr. B came and met me after surgery, as he always does, but this time, things were different.  Instead of coming out and telling me everything went great, he sat down quietly and looked utterly defeated.  I swallowed my heart and waited.  I know there are so many parents out there who have had this experience.  They've had "the talk" with their kids' doctors.  They've sat there and listened, stared blankly while statistics were recited and doctors told them that the odds were stacked against them.  They've listened to phrases like "there's nothing else we can do" & "I don't know how much she can take."  I know Marissa is lucky.  Not a day goes by that I don't thank God for the fact that she is still here and still strong.  She shouldn't be and I know that.  she shouldn't be able to smile and laugh and eat and roll over.  Every little thing she does, every minute we have with her is truly a gift.  That said, for some reason, even though I watched her suffer a near-fatal hemorrhage two years ago and respiratory arrest just a couple months ago, I have never really allowed myself to believe that the day would come when I would be faced with her mortality.  Now, here I was at midnight on a Sunday, in a dark waiting room, by myself, being slapped in the face with it.

So, what's a Mom to do?  I pulled up my big girl pants, dried my eyes, and vowed to fight like hell.  That's what we've always done and we weren't going to stop now.  Noodle came through that surgery, did great, did not regain her vision, but followed a healing course. We were discharged - again.

Fast forward a couple of days.  I found my sweet Noodle with a big 'ol goose-egg on the back of her head (pocket of CSF) and took her to see Dr. B once again.  He tapped her shunts, ordered an MRI and I expected to be admitted. Her pressures were good, MRI looked okay so we went home. 

Two days later she spiked a fever, started vomiting and we headed to the Emergency Room shunt kid purgatory.  I avoid it at all costs, but this time, we had to go.  I have NEVER had such a horrifying experience in.my.life.  For the next 14 hours, we saw no fewer than 80 different people who had 80 different opinions, none of which included a shunt malfunction, shunt infection, infected gall bladder, or septicemia (all my dumb ideas).  I was repeatedly told she had a simple gastroenteritis (aka: the stomach flu).  We were treated like crap, refused pain medication, and my blood boiled hotter and hotter as the clock ticked.  I told off way too many doctors and residents that day.  Despite what people probably believe, I don't like being ugly & mean, but cross me too many times, belittle me and make my kid suffer needlessly and I will turn it on.  Eventually, through a small miracle (and after some irate phone calls) we ended up in the PICU.  Eventually, she got every test I wanted her to have from the minute we walked in early that morning.  Eventually, she was diagnosed with:  Shunt malfunction, shunt infection, and septicemia. But....I'm just a stupid parent!  Oh, and a week later, her infected gall bladder was removed, too. 

I digress.

Shunt infection becomes meningitis....meningitis morphs into ventricultis and cerebritis with a nasty abscess in the left temporal horn.  Following the trip to the OR where the abscess was discovered Dr. B came in for another heart-to-heart.  This one was long and much harder.  I was more ready, though, or so I thought.  There are so many things I appreciate about this man - I've shared before how much we love him HERE.  I appreciate his honesty, compassion and the time he always seems to have to give to us even though I know he is being pulled in a million directions all the time.  I so appreciate those things about him.  We talked at length about decisions and when to make them and that it's okay not to make any right now.  We talked about her prognosis, which was and continues to be guarded at best.  It is statistically unlikely that she will grow to be a young adult.  It is statistically likely that because of the insult her brain has suffered, she could die from a seizure, a fever, another shunt malfunction, a bump on the head or any other myriad of things that we simply cannot predict.  How does a mother who loves her child more than anything, begin to process those words, those thoughts, those feelings?  I can't help but think about finding her lifeless in her crib some morning, about having to tell her brothers and sister that she's gone, about having to call family members, about planning her funeral, about having to go on living without her.  I don't know how parents survive the loss of a child - I really don't. 

Today, we are 12 weeks into this "event."  There is no end in sight.  Noodle remains externalized, but in fairly good spirits, for which we are thankful.  Other than her eyes, she has not appeared to have suffered permanent losses as of yet, which is quite astounding considering the extent of her infection, amount of surgical intervention she's had and the seizure activity she has suffered over the past three months.  She truly is a living, breathing miracle.

I will admit that I am struggling a little more each day.  I am tired - more tired than I've ever been.  I haven't slept more than a couple hours straight in 3 months.  I worry constantly - about Noodle, about the other kids, about how we're going to pay our bills, keep a roof over our head (living in a PICU is not cheap), my job, my marriage, whether everyone who's been lending a hand is going to get sick of doing so.......

I worry.  I can't help it.  My worrying won't change anything, won't help anything & I know that, but I'll do it anyway - it's who I am. 

Meanwhile, I wake up each day, fold up my vinyl couch, prepare for the barrage of doctors and residents who will start descending on our room & I take a few moments to look out the window at our gorgeous view and remind myself that we will face today and not worry about tomorrow.  It gets pretty lonely sometimes.  My heart hurts that my family is apart.  I miss my other kids something terrible and I long for the weekends when I get to see them again.  Then, the weekends come and I miss Noodle. Most days, I'm strong and optimistic and my sense of humor carries me through, but other days I feel like I could curl up in a ball in the closet and just cry. 

Who knows where this path will lead or when we will get there.  If you're ever in the neighborhood, stop on in - we'd love to see you!

The Great Tuberculosis Fiasco

Michelle requested I play the TB card first so here goes.

All children who are adopted internationally must undergo a physical exam and some blood testing prior to being issued a US visa.  Some children, based on their background, medical diagnoses, etc., undergo more rigorous testing.  Bamlak and Hiwot fell into this category and had to undergo extensive testing for Tuberculosis (TB).  This testing began in December and involved TB skin tests, chest x-rays, and serial sputum cultures.  I later found out after much investigation that the sputum cultures were actually gastric aspirates.  It is routine that these cultures grow for 8 weeks before they are deemed negative and the US Embassy clears the child/children for entrance to the U.S.

Backpedaling a bit; when we visited Ethiopia last December, I left saying that I was 99% certain Hiwot would test positive for TB.  For the year prior all of the monthly updates we received indicated she was generally sickly, never gaining weight, usually losing one month, going back up the next and continuing that cycle.  She had frequent colds and GI illnesses.  Spending a week with her, it was obvious that something was going on.  She was just weak and didn't have any stamina.  She would break out in cold sweats with no warning, had a persistent cough and runny nose and just didn't look super healthy.  A positive TB test would be a pretty huge setback in that she would in all likelihood not be released to our custody without receiving months and months of treatment.

We were on pins and needles once testing started waiting for 'the call.'  I was shocked when our agency called to tell me that the children received Embassy clearance.  I told our coordinator to get an appt as soon as humanly possible and that I would book a flight within days.  She tried to convince me to wait a week or two, but something in my gut told me we had to hurry.  Maybe I felt burned from our experience in Kyrgyzstan, maybe Mommy Instinct kicked in, maybe I just desperately wanted them home, but we threw it together and I was down there in a few days. 

Fast forward to the day after week got home.  The phone rings and it's our coordinator calling to tell us that the US Embassy made a horrible mistake.  They neglected to let the kids' cultures finish growing before clearing them.  Hiwot's TB culture turned positive in it's 7th week on the day that our agency wanted us to arrive in Addis.  Thankfully, I hadn't listened to them and we already had the kids home!

I immediately got on the phone to Pediatric Infectious Disease, our pediatrician, the health department and got the ball rolling with testing here.  Hiwot began treatment based on the positive culture in Ethiopia.  We sat and waited for weeks and weeks for the drug susceptibilities to come back on the organism they isolated from her cultures.  They were unable to get anything so they forwarded it to Nairobi.  Meanwhile, all of the testing we had been doing here has come up negative.  Hiwot had skin tests, chest x-rays, blood tests, bronchial washings, even a biopsy of her lymph nodes.  Everyone, including the CDC is baffled.  IF she truly had TB anywhere in her body - those tests certainly would've found it!  Hiwot is growing stronger and her symptoms are subsiding. 

Many more weeks pass and we receive the devastating news from Nairobi that Hiwot's organism is multi-drug resistant, otherwise known as MDR-TB.  Now everyone's undies are in a bunch!  Think choppers over the house, men in white suits..........

The CDC and the health department are pushing us to start treatment immediately.    I politely declined since treatment involves intravenous medications for YEARS!  Yes, you heard it - a PICC line, IV infusions that are extremely hard on the organs, and a ton of trauma to a little girl who just arrived home a couple months earlier.  Still, we have NO POSITIVE CULTURES on anything here in the US.  None of it made sense.  How could they expect that we would subject her to that type of risk based on a positive culture from a lab in Africa when the highest quality testing HERE was unable to prove anything?!  It got ugly, but luckily our Peds Infectious Disease team is amazing and offered incredible support and advocacy.
 
Eventually, everyone just kind of backed off.  We will never know what really happened.  It is entirely possible that she is harboring a TB infection somewhere in her body, although unlikely.  This very well might not be the end of the TB story, but we're prepared to deal with it if it rears it's head again.  For now, she's happy and healthy and sassy and we can chalk this up to one more medical mystery for our family!

Quickest Recap Ever

March - Bam and Hiwot came home.  They acclimated incredibly awesome! Esen had the hardest time with the transition, but now is the greatest big brother on the planet.  He has grown so much over the summer!  Bam and Hiwot are super healthy after being treated for giardia, campy and a having a TB scare.  That's a really looooong story.  Marissa took to her new siblings right away - loving the attention and the added chaos.  We also celebrated Bamlak's FIFTH birthday!

April - We focused on settling in and getting used to being a family.  Esen celebrated his SIXTH birthday.  Yes, seriously, I don't know what happened - he's so.dang.old.!  Bam & Hiwot started attending daycare and absolutely loved it.  Their English really blossomed as did their personalities.

May - I enjoyed my first Mother's Day as Mom to FOUR KIDS!  It was surreal.  The kids continued to learn how to get along with each other and developed great relationships.  We learned a lot about parenting these new, little people and personalities really started to come out!

June - The start of summer brought lots of fun outside activities and.........a trip to Kyrgyzstan for Kevin, myself and Esen!  We spent 2 weeks in Bishkek visiting Kamila on our required bonding trip (i.e., trip 1).  She is incredible and feisty and beautiful and so ready to come home. We celebrated her 4th birthday while we were in country. The trip for Esen could not have come at a better time.  He really needed something that was just for him that didn't involve Bam and Hiwot.  He was so proud to be back in "his country" and handled the travel like a champ!

July - Marissa celebrated her THIRD birthday!  Unbelievable to me that she is already three.  I look back at the past three years and how much she has changed and accomplished and I am truly blown away.  Not to mention the lifetime of lessons she has taught me in the past three years.  July also brought the start of a very difficult time medically for Marissa.  She was admitted to the hospital on 7/17 and with the exception of a couple of very short trips home, remains hospitalized.  More on that in detail in later posts.

August - School preparations for all four kids combined with Marissa being in the hospital monopolized most of August.

September - School started - Early Childhood, 4K, Kindergarten and First Grade - geez!! Unfortunately, Marissa didn't start with her EC class and who knows when she will, but the others did start school on schedule and are loving it so far. 

 

That brings us up to date, in a nutshell.  I'll try to elaborate on each kiddo more and get caught up, but at least you know a little of what we've been up to.

It's Me

Well....the photo is quite obviously not me, but I am here again.  It's been six months - SIX!  In some ways it seems like a really long time, and in other ways I can't believe all that has happened in that short span of time.  I've often wanted to start writing again, but life gets in the way and the words don't seem to want to come. At least not words that make sense or seem to have any sort of profound meaning.  I need this, though.  I need the therapy it provides - the outlet. I need a place to log what goes on with my family because I know I won't remember it all and frankly I suck at life books and photo boxes and journals and everything else I thought I'd be really great at as a mother.  So, I'm back to blogging (I hope).  I have no frickin' clue where to begin to catch up, but sometimes you just have to jump, right?