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!