Tuesday, May 1, 2012

Busy little boy

This little boy has been busy!  

Between eating huge bowls of oatmeal, soup, and yogurt, he has been exploring every inch of our house.  Yes, after spending the first few weeks home wanting only to lay on the area rug in the living room, Micah finally decided it was safe to expand his horizons a bit and start inch-worming his way around the rest of the house.  He has discovered that he loves to bang the ironing board against the wall in the laundry room (because it makes a wonderfully crashing noise and it also scrapes drywall off the wall . . . doubly rewarding, right?)  Here is a common sight these days:
This is a mischievious Micah grin as he tries to scoot himself into the laundry room and kick the door shut before somebody catches him.  Whenever the door gets left open, Micah starts to chuckle and push himself across the floor toward that tempting open door as fast as he can.  

He loves to lay in front of an open door and kick the door into the little spring thingy that protects the wall.  Kick.  (giggle giggle)  Kick.  (giggle giggle)  And he can amuse himself with this game for ages.  He thinks it is hilarious.  He opens kitchen cupboards and flings whatever is inside across the room.  He squeezes himself under Josiah's bed and laughs and laughs.  
And why is all of this such great news, you might wonder?  (Is she really bragging that her kid is being a bit naughty?)  Well, if you had met Micah two months ago, you would say, as we do, "Is this really the same little boy?"  He used to rock himself back and forth, back and forth, refusing to make eye contact much of the time.  He used to be content to just lay on the rug and flutter his fingers in front of his eyes.  He used to look miserable or worried or pensive or complacent much of the time.  Not all of the time, but far too often, he just looked like he would really rather just be put back into that lonely little crib in the mental institution and just have everybody in the world leave him alone, thank you very much.  

But more and more every day, Micah is coming out of his shell.  He is not so scared all the time.  He seems relaxed.  He seems interested in the world around him.  He seems to be really enjoying life a lot of the time.  He is coming to life before our very eyes, and every time I hear him giggle his impish, mischievious little giggle, I just have to laugh with him.  He is happy to be here!  

Besides that, he has new noises.  He used to have three noises:  crying, laughing, and "UH."  (Sort of a caveman grunt type of noise.)  Well, lately, he has all sorts of noises.  When he is happy and content, he can be heard making little "huh-HUH"  and "mmm-MMM" noises.  When he is feeling really pleased with life, he tends to sort of chuckle under his breath as he plays, just obviously really happy.  Love that.  Instead of just "UH" we are hearing more "ah" and "eh" vowel sounds.  And lots of humming, happy sorts of noises.  And then the last two days we have heard a very clear "G" sound.  Moving from vowel sounds to consonants is cause for celebration around here!  

Now for the medical updates.  Micah had an endoscopy recently, where it was determined that there is no obvious major physical or medical reason for his failure to thrive.  No celiac disease, no lactose intolerance.  Everything from his mouth to his intestines appears typical, except for a couple of correctable issues:  he does have some reflux, so he is taking a daily medication for that now.  And we discovered a whole host of nasty bacteria junk, and we've blasted them with a variety of antibiotics.  

We have managed to convince the doctors that Micah does not need a G-tube at this time, as well!  When he first came into the hospital, the day we arrived in the states, the doctors were indicating that he probably would not be going home from the hospital without a G-tube.  I think they assumed that if a child is nearly six years old and has not yet learned to eat, then he never will.  And after his discharge the doctors continued to predict that Micah was "definitely headed in the direction of a G-tube."  At his follow-up appointment the doctor tried to schedule the surgery for his G-tube placement.  But with an eight-pound weight gain in six weeks, I think Micah convinced them that he didn't need the feeding tube.  The doctor has agreed to "hold off" on the procedure for the time being.  Yay, Micah!  

A trip to the x-ray clinic has confirmed that Micah does have some scoliosis, but it is not as severe as we had feared, and at this point we are simply going to continue to monitor his spine as he grows to make sure that it does not become worse.  The plan is mainly to work with the physical therapist to address the scoliosis.

Micah saw a pediatric urologist, who determined that he will be having a minor operation next month to adjust some things that need adjusting (and descending.)  Should be a fairly routine out-patient procedure.

Micah also saw the neurosurgeon, an appointment we were greatly anticipating.  The news there was not quite as good as we were expecting.  First of all, his shunt may or may not be functioning properly.  Apparently the CT scan done at the hospital last month did not definitively prove that the shunt is working properly, and there is some concern that perhaps it is not.  We are going to be having a procedure done called a Shunt Study in the near future to discover the answer to this question.  The other news from this visit:  there is nothing that can be done to correct the shape of Micah's skull.  This was a surprise for us, because we had been told earlier (not by a specialist) that skull-shaping helmets and surgery were both options.  Now the experts are telling us that it is far too late for a helmet, because his skull bones have already fused.  It is also far too late for a skull-shaping surgery.  If we were to attempt such a surgery at his age, it would be a high-risk, life-threatening procedure.  And there is no medical advantage to taking such a risk.  Micah's skull is very flat across the back, and he has two bulges on his forehead, and we were hoping that we might be able to round things out.  Apparently this is not going to happen. 

In other news, Micah did truly amaze the neurosurgeon who examined him.  The doctor examined his CT scans before coming in to meet Micah.  And when she met Micah, she was expecting a child with no ability to use his hands at all.  She was  expecting zero mobility.  She was expecting profound brain damage.  She watched my determined little boy, scooting himself around the room on his back, pulling himself up to a sitting position, and balancing himself to sit upright unsupported, and she was amazed!  She watched him find one strand of hair on my shirt, pluck it off of my sleeve, and then begin to carefully wind the hair around and around his finger, holding the hair up to see it in the sunlight from the window.  She watched him reach out with his feet to grab for his sippy cup that was out of his reach.  She said that the human brain has an amazing ability to compensate, and to grow new pathways, and his brain obviously has, because according to the  CT scans, the damage done by the hydrocephalus should have rendered him incapable of the skills that he was so sweetly demonstrating for her.  

Micah has also been amazing the therapists.  The physical therapist, speech therapist, and occupational therapist that we see (for several of our kids) are an awesome team of ladies that really know their stuff and know how to challenge my kids and teach me how to work with them at home.  They are good, and we are so blessed to have found them!  And they are really enjoying figuring out our two newest little guys and coming up with goals and a plan for treatment.  At this point, we have no idea whether Micah will ever be able to walk, but the team of therapists are cautiously optimistic!  

Whew!  That, in a nutshell, is what we have been busy with this last month with Micah.  I have lots more news to share about sweet Gideon, so stay tuned for another post soon!

But right now, I hear the ironing board being smacked against the wall repeatedly.  And is that giggling I hear?  Time to go get Micah out of the laundry room again!  (Have I mentioned lately how much I adore my sweet new sons?!?)


Christine said...

What a trooper! Sohappy to hear he doesn't need a G-tube. 8 pounds in 6 weeks-- wow!

Eve Stein said...

Well who can blame him?... I love flinging the door into the springy stopper thing too and when I was a kid, I used to sit and flip the spring back and forth just for the fun and noise of it. ;)
What exciting news that Micah is becoming so mobile and interactive! - The future looks very bright indeed! :D

Jenna said...

Can I just say that I absolutely adore Micah's laugh?! Oh my goodness, too precious for words. Your boys are beautiful as are your other children and they are so blessed to have you!

Hope Harder said...

So glad you brought that boy home!

Marianne said...

LOVE this update!! I know I've told you before, but your adopting him is such an answer to our prayers! It's amazing to see the progress he's made in such a short time, and what a difference the love of a family and good medical care can make. I'm looking forward to "watching" him grow! Blessings to you all :-)

Marianne said...

p.s. I just showed my boys these updated photos and they said, "aw, cute!". Cute indeed!