My Bionic Baby

A few nicknames come to mind today, as Corban sports his fancy new hand splints. Robocop, Terminator, Cyborg, Iron Man, to name a few. But "Bionic Baby" really has a nice ring to it. Don't you think?

With these bad boys, he really does look like a force to be reckoned with! And that's ok. He's been through "hell" and back and lived to tell about it. He's rough. He's tough. He's Bionic Baby. 

Don't cross him. He might just whack you in the nose with his metal arm.

Hip Surgery

Now that things have sort of slowed down for us, the question we are frequently asked is "so, what's next?"

And the answer is...?

THIS is what's next:

 
Hip surgery. 

Yep. Mid June.

Half of me is really excited and the other half of me is petrified at the thought of it. The excited part of me says, "praise God that there is an option for your little boy and that his mangled little hips can be corrected!" And, "be grateful that there is a qualified and competent doctor out there, who is willing to tackle this mountain of a mess!" And, "how exciting is it that your son might be able to walk one day!"

And I am. I am excited. And grateful.

But the petrified half of me knows--it will not be a walk in the park. Corban's hips are a mess! His hips are bilaterally dislocated and his ball joints are backward. Yes, that's right. They are backward!

Why? Well, at birth, both of Corban's femurs were badly broken. But all we could do at that point was to leave them alone and let them heal. So they healed. Backward.

To fix this problem, Corban's femurs will need to be cut (osteotomy) and rotated (180 degrees or so), "pins" put in his legs, and ball joints placed in socket (probably, for the first time ever). There's also a good chance that the surgeon will need to take a small section of his femur OUT, in order to fit his hips into socket. Yuck.

The surgery is supposed to take all day (about 7 hours), with a 4-5 day hospital stay, and a total of 8 days away from home.

When he comes home, Corban will be in a spica cast, which will look something like this picture below.

He will be in it for 6-12 weeks after surgery, which will make for a looooonnnnnnnnnnggggggggggg, hot and stinky summer. He will not be able to take baths while in casts, and we will need to staunchly protect the casts from any and all liquids (including those that come out of the body).

He will be in pain. He will not be able to sleep. He will cry. He will not want to eat. He will be miserable. And so will we.

Our other two kids will have a hard time with it all. They will be stressed. We will be stressed. Corban will be in pain. They won't understand. It will make for an even longer summer.

So, when you think of it, please pray for us! Pray that God would see him through the surgery. Pray that Corban would tolerate the shock of it all. Pray that he would not feel betrayed as we hand him over to the doctors to be "tortured." Pray that Corban forgets all of this when he's older. Pray that the Lord guides the surgeon's hands as he cuts my baby's flesh, bones, and then puts all the pieces back together again. Pray the doctor is well-rested, focused and doesn't encounter any unexpected problems during surgery. Pray the anestesia would do it's job and that Corban would not taste excruciating pain. Pray he wouldn't have any reactions to the drugs he's given. Pray he would not get any infections. Pray the Lord gives us strength and mercy to help Corban through the recovery process. And pray that God would surround us all in his perfect peace.

Pray. Just. Pray.

Knocky Head

Astronaut? Hockey player? No, just Corban.

After 9 months of enduring hockey player jokes, being compared to an astronaut, a football player, a helicopter pilot or a creature from outer space, Corban is FINALLY able to put away one of his many hats. Well, really his only hat for the past 9 months.

With cranial molding helmet in hand, he braved the heat of a scorching hot summer, sweat great drops of sweat every other minute, endured nasty stinky hair matted down to his head with a perma-wave sticking up on top, trudged through the embarrassment of his mother taking him out in public... NAKED,  suffered through staff infections, sore spots on his scalp, hair being pulled out accidentally and many other tribulations due to this unusual hat of his.

So it brings me (and Corban) great pleasure to announce today...... he's done! The day has finally come! Corban is finished with his helmet. And while his head is not PERFECT, it is a far cry from where it was 9 months ago.

To show you, I have constructed a before and after pose. (Before: May 2012, After: January 2013)

Can you see where the top back of his head was quite flat and sort of pushed up at the top? Now it's much more round, smooth and shave-able. He'll thank us one day.

Perhaps you are wondering why we needed a helmet in the first place? Well, after spending the first 5 months of his life lying on his back in the NICU, with the first 2 months of it not being able to be picked up (due to 4 broken bones), Corban really couldn't pay much attention to the back of his head. And we couldn't either. We were dealing with much bigger issues then, like keeping him alive.

But after getting him home and settled, we realized that we had only a short window of opportunity to correct his head. Problem was, we realized that when he was close to 10 months old, so it made the whole process take a lot longer than normal with less improvement than typical. A treatment that ideally should be started with a 4-6 month old baby, and worn approximately 4 months, ended up taking 9.

So, the helmet-wearing endeavor took a lot longer than we had hoped and turned out to be a lot more work than we initially thought, but looking back we're glad we did it. No regrets. The improvement he made was well worth all the appointments, adjustments, driving time, discomfort, inconvenience, cost and so forth.

That's not to say I'm not THRILLED to be done with that thing! Oh man. Really, all of us are quite relieved to close that chapter in our lives--especially our little Corbantor. No more sore spots, no more infections and no more sweaty stinky head! Ah, what a relief!.

But the best part? He can finally show off his beautiful flowing locks and listen to all his many adoring fans gush over his crazy amazing hair. Because it really is amazing hair. And it truly is....... Ca-RaZy!!!! (just like him)

Four Eyes and Proud of It

Well... after much kicking and screaming, Corban drug me in to the doctor's office this week to pick up his new glasses. I told him I didn't want to have to deal with one more thing and that he already had enough equipment on his body, to which he replied, "Mom, get over it. I need these."

"Okay, okay...."

So we went and tried them on. Once he finished trying to rip them off his face, he began to look around. And then he started to smile. And then he started to laugh! He could see! Ha!

For the first time, he could see my face, he could see his hands... He could see everything up close that has been but a blur to him his whole life. Wow. I guess I didn't realize how bad it was, until I saw how much of a difference the glasses made. Such a difference!!

So, now that we have one extra thing added to our long list of Corban gear, I have but one regret--that we didn't get them sooner!

  Couldn't you just eat him up??!?

The second pair...

And here he is, rockin' them out on video.

Many Expeditions

Well, I haven't updated the blog in a while, because, to be honest, I haven't had any earth shattering news to share. But that is OKAY!!! Earth-shattering is bad. Hum drum is good.

But that's not quite accurate. Corban has been doing some pretty amazing things lately - EATING, the first and foremost! He has ventured though broccoli cheese soup waters to lasagna mountains to pot roast caverns to fields of luscious chicken noodle soup. In all his wanderings, his mother makes sure to carry a blender with her, to aid in his many expeditions.

His occupational therapist has also been assisting in his endeavors, with all the latest travel gear. Blue lip tape? They say it's all the rage.

He's been awfully busy lately with his rigorous exercise routine and has little time to sign autographs. Though he apologizes for the inconvenience, he says he's willing to make a guest appearance for anyone genuinely interested, as long as his mommy gets to come along.

The protein shakes we've been feeding him (haha) have given him mounds of energy to spend on doing whatever his heart desires. Like hanging out in the excersaucer, for one.

And of course, he is not alone in his plot to take over the world. His big brother and sister help him in every way they can (which usually involves some kind of torture that will ultimately make him a stronger and more courageous individual).

Torture like you've never seen. Torture beyond human imagination. Torture to stop all manly men in their tracks from the sheer horror of it all.


Hairbows.

My Checklist for the Week

Let me tell you, some weeks are crazy and some are just plain insane. Last week was just plain insane.

On Monday:
Met with our Occupational Therapist to brainstorm once again how to feed Corban, since he a) aspirates on thin liquids and b) won't eat thick ones. Check

Deal with severe bouts of constipation, including crying, screaming, turning red in the face, etc., and agonize over how, what and when to feed this child. Check 

On Tuesday:
Take all 3 kids to Corban's ophthalmologist appointment to find out our 14 month old needs GLASSES. Check

Perform "surgery" on my baby to get him to poop, and get stool samples for the pediatrician, to test for blood. Check

Notice after 5 o'clock that I missed a long awaited phone call from our geneticist. Check

On Wednesday:
Call geneticist first thing in the morning and learn that Corban does not have the typical gene mutation for Freeman-Sheldon Syndrome and that they will keep on testing his genes for other variants. Check

Pack a lunch (and all 3 kids) to see Corban's upper extremities orthopedic doctor. Get halfway there, realize I forgot his milk at home, turn around and arrive at appointment 20 minutes late. Check

Check in, feed the kids, then see if we can break for Corban's 2 o'clock appointment with Orthopedic Services just down the road. Wait for doctor to adjust helmet so it doesn't create a ridge in the top of Corban's head anymore, along with a bright red spot on the side of his head. Check

Rush back to see his orthopedic doctor, only to sit there and wait for another couple hours. Finally see him, receive no new news, then load up the crew to head home after being out for 6 1/2 hours. With all 3 kids. Check

Collect more stool samples for pediatrician. Check

Remember to call the medical supply company so we don't completely run out of g-tube bags and find ourselves up a creek without a paddle. Check 

On Thursday:
Wake up to the sound of a knock at the door, quickly throw on some presentable clothes and greet the medical supply company delivery guy, with a smile (haha, not really). Check

Go to pediatrician appointment and discover that 3 out of 4 stool samples tested positive for blood. Check

And that he has a double ear infection. Check

Head to pick up his antibiotic and on the way, get a phone call from the GI doctor's office with an appointment time and another prescription medication for Corban to take. Check

Get Corban home for a SHORT nap, then head back out again and break all speed limits to make it to the lab before it closes at 5:00. Barely Check

Get a large vial of his blood drawn from his tiny little veins for the GI (gastrointestinal) doctor next week. Check

On Friday:
Brainstorm about what could be causing the bleeding, about double ear infections, about alternating medicines, how to get him to eat, and swallow studies, and bottles, and helmets, and hand splints, and constipation, and therapies, and endless doctor visits, and sleepless nights, and smiles, and baby laughter, and funny faces, and how all the troubles of this crazy life we have, seem to fade in light of the joys we receive. Check