A happy surgeon

Finally - I get to see a smile on that sweet face of his! I know I have gushed on before about how much I love our neurosurgeon. I was saying to Kevin last night that I sure hoped M was in one of her silly moods when we got to her follow-up appointment today. Her doc has, unfortunately, always seen her at "her worst" and while he is always professional and optimistic, I really wanted him to see what we get to see every day - that is a happy, smiling, sweet baby girl. He was pleased and I think a little relieved, too, that things have settled down for her. Better yet, we got a pass until May when she'll return for her next MRI. She does still have some enlarged lymph nodes, one under her neck incision and one at the base of her skull, that we'll monitor for changes.  Hopefully nothing is brewing.

Aspirations

And no, I'm not referring to my dreams for the future.

Last night we found ourselves in the ER. M aspirated during her evening medications and bottle feeding. This is her second aspiration in less than a month - suspicious. It was a particularly frightening incident, she went nearly a minute without being able to cry, move air, cough or do anything but lay stiff, looking totally panicked. She then began the coughing, vomiting, crying cycle. She improved over the next 1/2 hour, but the after hours nurse talked to the peds on-call doc who wanted her to be seen in ER due to "her complex medical picture." I can appreciate that so we made the 1 hour trip to the hospital.

I'm always amazed by our great facility. It is a University hospital - a teaching facility with a contant influx of new faces - med students and residents rotating through. Still, no matter when we go or where we go we are always greeted like we're old friends. Mind you, we've only been through this ER three times - that's it! Most of our admissions have been through the clinic. Still, last night there were nurses who remembered us, a Child Life specialist who helped us out last time when E was along, and the very same Pediatric ER doc that was on the last 2 times we were there. You wouldn't expect such a down home community feeling at a facility like this one, but we always get it.

Anyway, we were in and out in under 2 hours - a record, I think. M looks good, no obvious problems. We most likely need to follow up with a swallow study, however. I'm hoping this is just an intermittent issue related to her three recent surgeries and not something more.

Videos....as promised

The boys out on the ice.  I just LOVE the joy on his little face despite the constant falling down.  He has such determination and spirit! Daddy was so patient, too! :)



THIS is what I've had to deal with for the last last 48 hours straight (except for when she's sleeping peacefully at night)!  I know, hard to handle, right?  I'm telling you - no naps, no crying, no fussing.  I am SO happy and grateful to have my girl back!!

Green Lights and a Smiley Girl

Just a quick update - I promise pictures (and maybe video if you're really lucky) later on)!

We operate on the traffic light system around here as far as school is concerned.  It has been the one tangible thing that has worked for E to monitor and help manage his behavior at school.  Green light is a great day with no infractions, yellow light is for minor disturbances or reminders, red light is for major infractions (basically violence or something equally as unacceptable).  Last week, having earned four green lights in a row; he goes to school Mon-Thurs; E was able to choose an fun family activity for us to do.  He chose ice skating.  He has never been.  I haven't been since I was probably 13 or 14 and Kevin hadn't been since about that age either.  We found a rink close by home that was indoor and had skate rental so we headed out yesterday afternoon. 

When we arrived, I asked the owner if it would be acceptable for us to take M around the rink a couple of times in her wheelchair so that we could go at least a bit as a family.  He happily obliged and even helped us get her out on the ice.  Once on the ice, what we got were glares and sour looks from other parents and even one jerk that kept skating by saying, under his breath "you know, that's against the rules."  We saw him go over and talk to the owner a bit later.  Anyway, after a trip around, we just took her off and I stayed back with her while the boys went out.  I get that she is young, doesn't look "obviously disabled" (whatever that looks like) and that her wheelchair looks suspiciously like a really expensive, really trendy stroller, but seriously people - get a frickin' life, we're just trying to be a normal family!!  I know, get over myself, get used to it, it's going to happen forever.  Still pisses me off, though.  Anyway, the boys did awesome.  E fell - a lot - but really seemed to enjoy himself anyway.  I was afraid he'd be all built up about going, having no idea what to expect and then hate it, but he really truly loved it!  Today, however, there are a number of ugly bruises on his skinny, little bum. :(

I'm happy (and a little hesitant) to report that M has been doing incredible these last few days.  It seems she is FINALLY feeling better.  She has been happy, squealing, smiling, eating and drinking well and sleeping soundly.  I was really starting to doubt that this latest revision would be deemed a success, but things are starting to look up for her.  This is a huge relief since anything we do from this point forward is going to be pretty drastic and possibly result in further loss of function.  We're keeping our fingers crossed.

Bittersweet

A couple of days ago brought more bad news out of Kyrgyzstan.  I'll give you some history in a Cliff's Notes kind of fashion.  For the past couple of years, the Kyrgyz Government has stated they wanted a bilateral agreement to complete our pending adoptions.  Finally, last fall, the US Govt gave them what they wanted in the form of an MOU (Memo of Understanding).  It sat, and sat, and sat, circulated, and sat some more.  We received word this week that it was rejected.  The Ministry didn't feel the pipeline cases deserved any special consideration and that they should be processed under the Hague when Kyrgyzstan ratifies it.  For those in the adoption world, you well know that it takes and ORGANIZED country YEARS to ratify the Hague.  A country like Kyrgyzstan, well, let's just say I doubt they will ever get it done.  As you can imagine this was a crushing blow to all of the waiting families.  We went from believing we were as close as we've ever been to getting our kiddos home to being told it's probably not going to happen.....period.

Rewind to a few weeks before Christmas.  We reconnected with a friend currently living in Bishkek.  This is an amazing, wonderful woman who makes it her life's work to care for those who cannot care for themselves.  We immediately shipped off a little gift for K.  I sent it Priority Mail Flat Rate - you know the commercial "ships anywhere for one flat rate".  Apparently Bishkek, Kyrgyzstan is not 'anywhere'.  It was $42 for the $11 package and it just arrived this week!  I digress.  Our friend, God Bless her, took the package to K and sent us a few pictures and an email about her.  I'll share just a little bit of what she shared with us.

....there was no contest, her favorite gift was your pictures. She couldn't stop looking, pointing, and speaking to you in her own way. I would say mama, papa and she would say "lala" as she pointed to your pictures. I would say sister, brother, their names, and she would always point and speak, never looking at me, but at your pictures. I honestly believe she knows you are her family.......

So, you see, it makes things harder now.  She is older.  She is aware.  She knows about us.  She understands that we love her.  She does not understand why we won't come and get her.  She is not going to understand when another birthday passes, another Christmas, another New Year.  She will feel abandoned all over again and we did that to her.  Perhaps it would've been better to not send her anything.  Perhaps it would've been better for her not to know.  Now, I feel a mix of joy and guilt.  I am joyful and grateful to have given her this one day of happiness of feeling loved and wanted, but I feel guilty for all of the other feelings that are going to come to her when the days and months pass and we don't show up. 

Today I have hatred in my heart.  It is an ugly feeling and not one I'm proud of.  I can't imagine the how any human being can be so cold and uncompassionate when it comes to innocent, suffering children.  Furthermore, the Kyrgyz have proven time and time again that they don't give a crap about their children.  If they did, they wouldn't be dying in institutions rather than going to loving families.  I think the only thing that keeps me going is that I do believe in Karma.  Perhaps that's just as ugly as the hatred I'm feeling, but right now, at this moment, I take comfort in believing that the people responsible for the continued suffering and deaths of these children will pay for it with their own suffering someday.

Self Censorship

I started this blog back in, oh 2008, I think, solely for the purpose of chronicling our second adoption from Kyrgyzstan.  I suspected that adoption process would conclude in late 2008 early 2009 and really hadn't thought ahead to what would become of my little blog.  Well, as you know, a lot has happened in the past three years.  Our second Kyrgyz adoption is STILL in process and our first domestic adoption occurred in 2009.  Our lives have changed more than I ever could've imagined over the past three years.   We have had experiences I never anticipated.  We've learned more than I thought I could learn about things I never even heard of.  As a result, this little blog of mine has morphed into much more than just a place to record an adoption journey.  It has become a place to vent, to share stories, to preserve memories, to keep family and friends informed, to share knowledge, to facilitate connections, but perhaps most important, it's become a sort of therapy for me. 

Over the years, my readership has expanded to include not only close family, friends and total strangers, but coworkers, acquaintances, virtual friends, community members, and service providers.  As my readership has expanded, I've noticed myself "toning" down my posts a bit more - self censorship of sorts.  I find myself typing along, then suddenly stopping, thinking, wondering "what will so and so think if they read that" and ultimately hitting delete.  I have stalked read a lot of blogs over the past few years and am always awed by the writers that are brutally open and honest.  I am inspired by the women that have the balls to put it all out there and not care what others' think of them.  I wonder how great it must feel to just be able to do it and go about life knowing you've said what you've felt and have the peace that goes along with that.  I often wish I could do that and then wonder, why can't I?  Who says I have to be proper all the time?  Who says I have to worry about hurting someone else's feelings?  What about my feelings?  This is MY blog - no one is forced to read it.  Why can't I be one of those ballsy people who just let it all hang out?  Perhaps there's one person out there who would be inspired or touched by something I've written.  Perhaps there's one person out there who really needed to hear it!  So, my blog-resolution for 2011.  I'm going to try - really hard - to keep it real here.  If your a regular reader who doesn't feel they want to know me THAT well, you may wish to tune out for a bit.

Home Again

and so glad to be!!

Aspiration Pneumonia

We will gladly accept it and deal with it!  I know it's slightly twisted and a little sad that a huge smile crosses my face when the diagnosis is delivered, but anything beats shunt infections!  The shunts are still not deemed perfect, but her pressures are down some and CSF infection has been ruled out (YAY) so we're going to wait another 24-48 hours to see what develops.  Hopefully the ventricles will start to decompress and we'll begin to see our Dolly returning to us.  AS was the case yesterday, she had some immediate relief after today's shunt tap and now (several hours later) things are starting to turn uglier.   Here's hoping tomorrow brings more comfort and healing M's way.

Oh, on my quest to live a healthier 2011, I've abandoned my hospital cheesy potato addiction and replaced it with a not so much healthier one: De-lish-us brand popcorn. At a buck a bag it's pricey, but oh so worth it!!



Update

M had a horrible night, probably the worst one on record second to her hemorrhage last Feb.  She was inconsolable, pulling her hair, confused, had a temp of 103 and a very "junky" cough.  This should've been her easiest surgery ever, but her recovery has been terrible.  I suspect her anesthesiologist was either a sadist or pissed that she had to work late because M's throat is just trashed.  Now it's impossible to know what's neuro and what's throat related.  The neurosurg resident on call overnight didn't really want to walk her happy ass over to see her at midnight and just wanted to order some narcotics over the phone.  Sorry, not good enough for me.  Narcotics cover up neuro issues - DUH!  I wanted it documented that she was SEEN even if this chick didn't have a clue what to do with her (which she didn't).  So about an hour and a half later she showed up and remarkably M had screamed herself to sleep and looked very peaceful at that time - go figure.  She decided we should "watch her" until morning.  Anyway, this morning, her fever is down and her irritability is slightly improved.  She still has the cough and the junk and continues to pull her hair.  Her neurosurgeon feels this could all just be related to pain and wants to just see how the day goes.  She did have a CT an hour ago and some labs were ordered 3 1/2 hours ago but not yet drawn!  We shall see what those things show and how she does today.  I really hope he's right although she's never responded this way or had such a difficult time bouncing back so I fear something bigger is brewing.

Surgery....yet....again....

I knew it was coming - she hasn't done well since her 12/22 revision, but it still sucks.  We (and by we, I mean master surgeon B) have decided to go with a conservative approach.  If it works, we will be home free.  If it doesn't work, she will return to the OR and we will likely have a longer, tougher road.  Either way, I know we will handle it.  We have to.  I'm praying, though, that just this once, things would go perfectly for M.  She's in surgery now so I will update later on.

Holiday Wrap Up

Well, Merry Christmas and Happy New Year.  It appears I'm a bit behind....AGAIN!  We've been laying kind of low and keeping things pretty quiet.  We did get out a bit on Sunday, Dec 26th, to spend time with family and it was really nice to be able to do that.

New Year's Eve was nice and quiet - steaks and the good company of our closest friends and early to sleep (for me and the kids anyway). 

M has had a long, difficult recovery from this latest shunt revision.  Until a few days ago, she continued to be irritable, pulling her hair, sleepier than normal and just not herself.  She wasn't drinking at all and that prompted some lab work to determine if we needed to do some IV fluids at home.  While her labs values were trending down into the low range, her neurosurgeon was hesitant to put her on fluids because of the placement of her Hickman and distal shunt catheter.  They sit right next to each other in her right atrium.  Friday, she began to turn around and we've seen some smiles, better drinking and a less agitation.  She has an MRI, ECHO and neurosurgery visit scheduled for tomorrow morning.  We're hoping the news is good, however, we realize that this "event" is probably not yet over.  The neurosurgeon felt that, though he was very pleased with the work his partner did, it was probably not going to "fix" all of M's current problems.  We're thinking that he won't admit her tomorrow as long as she is doing clinically well.  He will likely wait until there is another malfunction to pull out his next trick. 

Yesterday, Kevin and I decided to have "date day".  We went and saw the Bodies Exhibition  which I have been wanting to do since last year when it was in Milwaukee.  It was so incredible!  If it comes to an area near you, you simply MUST go!  We also took in a movie, True Grit, which was way better than I thought it'd be.  I'm not normally a Western movie kind of gal, but it was really quite good.  We finished the day with an early supper at one of our favorite restaurants and then headed back to pick up the kiddos.  Thank you, Grandma and Grandpa for taking care of them so we could have this much needed time alone.

So, it's the New Year.  Supposedly one should be making resolutions and big plans.  Other than planning to continue to the quest to be a better wife and mom, and trying to improve my health, I don't have much.  Of course, I always plan to win the lottery, get out of debt, and buy a new house, but since I don't play the lottery, that stuff is unlikely to happen.  My wishes for this year are the same as last year:  Good health for my family, friends and especially my kids and for K to come home (preferably before May when everything expires for the last time).

I'll leave you with a few pictures of our holiday festivities:

Christmas Eve 2011

I'm always on the lookout for AA dollies and I stumbled across "Lenore" at Walgreens of all places.  I LOVE that she comes with her own Birth Certificate and Adoption Papers.

More dollies - thank you, Grandma & Grandpa!!

Favorite gift of 2010 - A Geo Trax Lights and Sounds Crossing for the massive train set E has!

Grandpa recently got his childhood Lionel train up and running. 

This is pure, unadulterated joy right here!

 First (and very much enjoyed) serving of banana cream pie.

Happy New Year - 12:00 a.m. Jan 1st, 2011