Saturday, March 31, 2012

Good Things Are Happening Around Here Lately . . .

This boy does not want to take life lying down anymore!
Look at what Micah is learning to do:

Standing up and balancing his head is hard work for such
a tiny little boy, and Micah likes to have someplace to rest
his head when he needs to take a break

And even when he is so tired that his legs are trembling
and he is grunting and grimacing with the effort,
he still wants to keep trying!  He is working so hard on this!
Micah is one tough, determined little guy!
I try to lay him back down and he yells at me, as though to say,
"Wait, Mama, let me try again.  Really, I can DO this!"
And in other exciting Micah breakthroughs, Micah is beginning to consider perhaps, maybe, someday, eating real food off of a real spoon!  After refusing, with a great display of disgust and horror, applesauce, soup, yogurt, oatmeal, mashed potatoes, and mashed banana, Micah finally found something he likes:
Chocolate pudding, of course!
Who doesn't love chocolate pudding?

I was starting to worry that his booster seat would stay clean
forever!  Booster seats are not supposed to be quite so clean,
you know?  

Happy boy!

Micah ate real food, and he is not screaming at me!
This is huge!
I have never met a child as orally defensive as Micah.
He usually clamps his mouth shut and REFUSES to let
ANYTHING AT ALL get past his clamped lips.
I don't even want to TALK about teeth brushing.
Suffice it to say, it is traumatic for all of us.
His teeth are HORRIFIC, and I am sure they are hurting him,
but until we can get him in to the dentist next month,
we are trying to convince him to eat, even with a mouthful
of sore, rotten teeth.
But today gives us all hope!  The boy ate!  Voluntarily!
If he keeps this up, he just might grow out of those
size 12-18 month clothes before his 6th birthday!
Go, Micah, go!

He is still worrying us with his extreme pickiness.
Some days he will take a few sips of his Pediasure and
toss the sippy cup across the room.  And that is all
that I can convince him to take in.  For hours.
(Tossing the cup across the room, I believe, was one way he learned to get attention in the orphanage.  But I wonder how much his little "trick" has contributed to his malnutrition, as well?  What happened when the nannies didn't keep retrieving the bottle and giving it back to him?)

But the last couple of days he really seems to be hungry
constantly, so I am starting to experiment.  
For instance, did you know that spinach can be blended into
Pediasure, quite a lot of it, in fact, and become
virtually undetectable?  Same goes for squash!  
Especially if Micah is laying his head on his Mama's lap
while he is drinking it, and she is holding the sippy cup
and smiling at him and touching his hair and 
telling him how fabulous he is and generally distracting him from thinking about tossing the cup across the room.  
If we continue to have success with this line of experimentation, I am going to try increasing the amounts of whole foods gradually, and see if I can get him to drink a homemade smoothie, minus the funky chemicals, additives, sugar, and impossible-to-pronounce ingredients.
How awesome would that be?  

Meanwhile, Gideon continues to eat anything and everything, second and third helpings at every meal, and then help polish off any and all food that anybody else leaves behind:

"Hey, Josiah turned away from his bowl for a second.
Surely that means he doesn't want it, right?"

I love to feed this boy!  He is such an enthusiastic diner!  While the other kids are flopping around, moaning and complaining about "Soup agaaaaaaain?" Gideon is flapping his arms with excitement, giddy at the thought of another meal.  

The only thing is, he is not so good at chewing.  We are honestly not sure if this is because of the bad shape his teeth are in or just because he has never learned to chew (and yes, we are taking him to see specialists to check on both of these possibilities.)  Soup, he is good at.  Anything that is soft spoon-food, he is good at, actually.  But sandwiches, crackers, pieces of cheese or meat or anything that requires chewing, is another matter.  While he loves to put every bite of food into his mouth, there is no guarantee that it will . . . ahem . . . stay there.  He tends to suck on a bite of food, roll it around in his mouth, and then spit it back out onto his plate.  And then he will try to eat the same bite again.  And again.  Yeah.  We are back to the old baby-food grinder again for the trickier foods, like meat and vegetables, and when we serve them that way, he loves them.  But anyway, at least he loves to eat!  That is the most important thing.  I am sure Gideon is about to bust out of his 2T and 3T clothes any day now!

And, as if all of that is not enough exciting news, I also decided to try something else wild and brave:  I took the boys to the grocery store!  And I would have to say that our expedition was wildly successful!  No screaming, no meltdowns, not too much rocking and stimming . . . and I even bought a couple of things, too!  Grocery stores can be pretty overwhelming places, with the bright, artificial lighting, the towering aisles of SO MUCH FOOD, the strange voices on the loudspeakers, the stream of people pushing past all around . . . I was totally prepared to scoop up the boys and bolt if/when things fell apart, so this was way above and beyond my expectations, to be walking OUT of the store and have them still ready to smile for pictures!

I am sort of pondering switching from a stroller to a shopping cart for our outings in the future.  Dear Micah HATES the stroller and fights and twists and screams like it is a medieval torture device, but look at this mellow face as he chills out in the shopping cart.  How cool is that?  Not scared at all!  Maybe I could get him one of those old-fashioned baby buggies?  Hmmm . . . 

Thursday, March 29, 2012

Five Times Three

I am the mom of three five-year-old boys!
Happy Birthday, Josiah!
Josiah, my sweet little lovebug, really loves his new brothers.  He is very gentle and patient with them, and he is so happy that they are finally home!  For awhile he started to really doubt that the new brothers would ever come home, or that they were even real.  I remember the night that he told me, when our adoption process was dragging on and on, months longer than we expected it to, "I don't think there really IS a Gideon and Micah, Mom.  They're never coming home, are they?"  At the airport Josiah was just giddy with excitement to finally meet the brothers!  I will never forget seeing him, jumping up and down and waving, a huge grin on his face as he spotted his new brothers for the first time.

He loves to give them English lessons, bringing them objects and telling them what things are called.  When Gideon gets into Josiah's room and dumps out bins of toys, Josiah says, "It's okay, Mom, I'll clean it up for him."  When the new brothers take their naps Josiah waits anxiously for them to wake up so he can play with them again.  When Micah is crying Josiah is right there, offering sippy cups, toys, and peek-a-boo to try to coax a smile out of the brother.  When Gideon falls down Josiah says, "Good walking, Gideon.  You can do it."  Makes this mama's heart sing to see my three five-year-old boys loving to spend their days together.  

This dear boy has a heart of gold.  
I am so, so blessed to be his mom!

Sunday, March 25, 2012

Hello, sunshine!

There is nothing more blissful than playing outside in the sunshine for the very first time with my new little boys!  Weather report predicted clouds and "liquid sunshine" today, so we are feeling especially grateful for the respite from gloom and gray today:
Gideon is so happy with the freedom of being
outside in our yard!  And I am happy to let him be a
grubby, curious little boy instead of having to tell
him "NO" so often!

Gideon loves to walk and walk and walk,
and he is getting better and better at it

He is very good at falling, and even when he
falls, he always has a smile on his face, and
he's always ready to pull himself back to his
feet again.  This boy loves to walk!

So calm and happy outside in the sunshine!

Micah tends to take things slowly, trying to decide
whether or not he is okay with something new

He seems to have decided that sunshine is good, and fresh
air feels nice, as long as he is in the playpen
After awhile, he even relaxed enough to show
me that adorable grin!

Josiah is apparently hoping I won't notice him
hauling a bucket of water into the treehouse . . . 

Josiah loves to be outside!

my beautiful girls, "Blessing" and Gracie

Gracie loves her sweet foster-sister!  She dotes on her and
hugs on her and chatters at her all day long.
Do you think Blessing minds?  :)  She is so patient with Gracie.

So happy to be outside!

Blessing's CP prevents her from tossing the ball for Molly,
but Molly still prefers Blessing over any of the rest of the kids


Silly boy!  Micah's gearing up to chuck his shoe
out of the playpen, which he thinks is HILARIOUS!

Gideon and Daddy


Can we just pretend you don't notice Gracie's
pajama pants and mismatched shoes, and that
you are just admiring Derek's handiwork with
the awesome new treehouse?  He built it with
the kids while I was traveling to pick up the boys!

The kids have been wanting a treehouse for ages!
They were so excited to show it off to me
when  I got home!

the big brother (and he loves to tell everybody
he meets lately about HOW MANY kids we have
in our family now!  He seems absolutely tickled to
be part of a large family!)  

So excited to be allowed to play in the dirt and
the rocks.  At first he looked so nervous, like
he was sure he was doing something wrong,
but as you can see, I reassured him that it is
okay to get dirty!  Love that grin!

Isaac and Josiah moving the slide into place so
Daddy can bolt it down
Josiah is teaching his little brother how to climb up the slides
good PT, right?

Gideon prefers to hold on to something while
he is walking on grass and uneven surfaces
(and after years of Josiah and his fleet of
Tonka trucks and tractors, our lawn is about
as bumpy and uneven as lawn comes!)

he falls down a lot . . .

but he always pulls himself right back up again

This boy has such an amazing, resilient, determined
spirit!  I love being his mama!

Tuesday, March 20, 2012


Several people have asked me questions about Micah's hydrocephalus, and I'm guessing several dozen other people are wondering but worried that asking might offend me if they ask.  Just so you know, I don't mind answering questions about his hydrocephalus at all, and if you have questions, please feel free to ask.  Just please be aware that if my children are nearby, they ARE listening, so please be mindful of their tender hearts.  Let me tell you a little bit of what we know.  


A condition in which fluid accumulates in the brain, typically in young children, enlarging the head and sometimes causing brain damage.
water on the brain

Micah was diagnosed with hydrocephalus as an infant.  Because of this and his abnormal ear formation, he was abandoned at the hospital and sent to live in an orphanage.  In many countries of the world this is still an all-too-common story.  Families abandon their children for different reasons.  They are usually encouraged by doctors and medical staff to give their children up, and they are assured that the child will be better off "with his own kind."  They are pressured to leave the child behind because the child will surely be such a "burden" to the family.  There is very little support for parents of children with special needs in these countries.  Medical care is expensive, and the quality of care is questionable.  The parents would be facing shame and shunning from friends and family, because to have a child with special needs is still all too often considered an embarrassment.  
I wonder about Micah's biological parents.  A young married couple.  Their first baby.  Their son.  And they willingly signed away all rights to him as soon as they knew he was imperfect.  I wonder who they are.  I wonder if their hearts were broken to sign those papers, or if they left him behind and never looked back.  I do know that they never visited him, and they did not have any interest in meeting us or seeing Micah before he left the country forever.  I pray for them.  They may not know what a treasure they are missing out on, but I know that they are missing out on an adorable, dimpled grin and an infectious giggle every day.  

From The National Institute of Neurological Disorders and Stroke:

The term hydrocephalus is derived from the Greek words "hydro" meaning water and "cephalus" meaning head. As the name implies, it is a condition in which the primary characteristic is excessive accumulation of fluid in the brain. Although hydrocephalus was once known as "water on the brain," the "water" is actually cerebrospinal fluid (CSF) — a clear fluid that surrounds the brain and spinal cord. The excessive accumulation of CSF results in an abnormal widening of   spaces in the brain called ventricles. This widening creates potentially harmful pressure on the tissues of the brain.
The ventricular system is made up of four ventricles connected by narrow passages.. Normally, CSF flows through the ventricles, exits into cisterns (closed spaces that serve as reservoirs) at the base of the brain, bathes the surfaces of the brain and spinal cord, and then reabsorbs into the bloodstream.
CSF has three important life-sustaining functions: 1) to keep the brain tissue buoyant, acting as a cushion or "shock absorber"; 2) to act as the vehicle for delivering nutrients to the brain and removing waste; and 3) to flow between the cranium and spine and compensate for changes in intracranial blood volume (the amount of blood within the brain).
The balance between production and absorption of CSF is critically important. Because CSF is made continuously,  medical conditions that block its normal flow or absorption will result in an over-accumulation of CSF.  The resulting pressure of the fluid against brain tissue is what causes hydrocephalus.

What causes hydrocephalus?

The causes of hydrocephalus are still not well understood. Hydrocephalus may result from   inherited genetic abnormalities (such as the genetic defect that causes aqueductal stenosis) or developmental disorders (such as those associated with neural tube defects including spina bifida and encephalocele). Other possible causes include complications of premature birth such as intraventricular hemorrhage, diseases such as meningitis, tumors, traumatic head injury, or subarachnoid hemorrhage, which block the exit of CSF from the ventricles to the cisterns or eliminate the passageway for CSF into the cisterns.
If Micah had been born in the US, he would have had a shunt inserted into his brain when he was days or weeks old.  His hydrocephalus would be a non-issue, and he would have most likely had a very typical childhood, except with more follow-up appointments than an average kid (to monitor the shunt) and perhaps some therapy to address delays.  Children are growing up in the US with hydrocephalus with very few effects.  Brain damage, developmental delays, and increased head size are avoidable if a child receives proper, prompt medical care.  
However, Micah did not receive a shunt when he was diagnosed.  In his country, babies with hydrocephalus are often expected not to live long enough to bother with.  Or even worse, it is decided that they are just not worth the effort and cost of surgery.  They are left in cribs for their undoubtedly short lives without treatments and therapies, without anybody really even giving them a chance.  It is a miracle that Micah lived as long as he did.  And it is a miracle that he did finally get a shunt.  About four years too late, but at least somebody finally saw the sparkling gem that this boy is and decided to save his life.  Because of that shunt, the pressure is no longer building up inside his skull and further damage to his brain has hopefully been halted.
One of the most common questions that I am asked is whether anything can be done about the size of Micah's head.  I was wondering this myself before I started researching hydrocephalus.  It would seem that if the shunt is working, then his head size should decrease, right?  Well, actually the bones in Micah's skull were pushed outward by the pressure of the fluid while his bones were still forming and fusing together.  The size of his head is the size of his skull, so at this point, the damage has been done.  The CT scan showed that there are large pockets of fluid in the center of his head, and his brain has been pushed to the outside as fluid has built up.  
He can, however, grow into his head as time goes by.  His head is the same circumference as mine.  Right now his body is very small and weak, and he has to work very hard just to lift his head up.  As he grows in size and strength, our hope is that the size and weight of his head will become easier for him to manage and he will begin to increase in mobility.
There are also options for reshaping his skull.  Because he laid in a crib for five and a half years, his head is quite flat and lop-sided.  We will be meeting with a surgeon to discuss whether he is a good candidate for skull-shaping surgery.  There are also helmets that can help to reshape the skull that we will be considering.  
As far as whether the hydrocephalus will shorten Micah's lifespan, we do not know that either.  As long as his shunt continues to function properly, his life should not be in danger.  If his shunt malfunctions (perhaps I should say WHEN, since shunts are notorious for malfunctioning) he will require immediate surgery to repair or replace the shunt.  This would be a life-threatening situation.  This could happen at any time in his life.  We know the warning signs to watch out for.  At this point, Micah's health is stable and we do not know what to expect as far as how many years with Micah the Lord will gift us with.
Another question I have been asked is whether Micah's developmental delays were caused by the hydrocephalus or by the extreme neglect he has suffered, and what sort of abilities he will have as he grows older.  That is a tough question to answer. We can see on the CT scan that significant brain damage has occurred from the hydrocephalus.  However, we are also aware that the human brain is a remarkably resilient wonder crafted with precision by the perfect Creator.  Brain plasticity (the ability of the brain to reorganize and build new neural pathways) is amazing.  
We will be working with Micah on intense therapy all day, every day, and giving him every opportunity to be the best Micah he can be.  And we will love and adore sweet Micah whether he remains just where he is for the rest of his life, or whether he learns to walk and talk and read and play ten musical instruments.  He is our beautiful son, and we feel so blessed to be his parents.