Appointments

When people start asking, "sooo... how are things going with Corban?" or "what's the latest in 'Corban World'?" or "how can I be praying for you?" I know it's about that time again. It's time for me to sit down at the computer and update the blog.

So, here I am again. Nothing too exciting to report. Just life.

Hmmm... Well, this week we have lots of appointments. That's exciting! I guess. :P

Let's see... On Monday, we see the GENETICIST.
On Tuesday, we see the SPEECH THERAPIST.
On Wednesday, we see the DIETITIAN.
On Thursday, we see the NEUROSURGEON.
On Friday, we see the PHYSICAL THERAPIST.
And on Saturday, we see GRANDMA. (Which is by far, the most important appointment of the week!)

Seriously though, we have lots of appointments. Not every week is quite this bad, but every so often it feels like the only thing I ever do is schedule appointments, go to appointments, cancel appointments, reschedule appointments, or run late to appointments.

Sometimes I get tired of all the appointments and think, "what's even the point to all of this?"

And then I remember, God makes appointments too. Lots of them! He makes appointments for seasons, for days, for nights, for life, for death, for joys, for sorrows, for everything in this world and everything out of this world. And he even makes appointments for me.

Ecclesiastes 3 says,

There is an appointed time for everything. And there is a time for every event under heaven—A time to give birth and a time to die; A time to plant and a time to uproot what is planted. A time to kill and a time to heal; A time to tear down and a time to build up. A time to weep and a time to laugh; A time to mourn and a time to dance. A time to throw stones and a time to gather stones; A time to embrace and a time to shun embracing. A time to search and a time to give up as lost; A time to keep and a time to throw away. A time to tear apart and a time to sew together; A time to be silent and a time to speak. A time to love and a time to hate; A time for war and a time for peace.

What profit is there to the worker from that in which he toils? I have seen the task which God has given the sons of men with which to occupy themselves.
He has made everything beautiful in its time. He has also set eternity in their heart, yet so that man will not find out the work which God has done from the beginning even to the end. I know that there is nothing better for them than to rejoice and to do good in one’s lifetime;...

So, that's what I'm gonna do! I'm gonna be faithful to what God's given me to do and take care of this unique child he's placed in my hands. And I'm gonna do my darnedest to rejoice, even if it means spending my entire week going to appointments. And I'm gonna choose to do good in my lifetime, instead of shirking my responsibilities and running in the opposite direction. Because in the end, that is a MUCH better way!

Laugh, Baby! Laugh!

Caring for a child with special needs is time-consuming. It's stressful. It's tiring.

But this laugh??!?

SO WORTH IT!!

Laugh, Baby! Laugh! from Corbani on Vimeo.

Bath Time, Before and After

This is what a year and a half and a couple of surgeries will do!! Plus a little blood, sweat and tears. Ok, a lot of blood, sweat and tears.

To get Corban to where he is today has not been a walk in the park by any stretch of the imagination. It's been hard! Each day can be a battle... feeding him, bathing him, taking him to doctor visits, researching how to care for him, figuring out what problems are causing what, finding the right surgeons for him, recovering from surgery, battling infections, etc. etc. Sometimes I hold my breath and ask God, "what's NEXT??" And then I exhale slowly. And take each day as it comes.

Right now, we are still trying to decide where to take Corban for the surgery on his skull. I am finding out more and more that wherever we take him, it most likely won't be a one-stop-shop event. I've been told that Corban will probably need not ONE, but TWO surgeries on his skull over the course of his life. That's if it's done correctly. If the surgery is not done correctly, he will need even more than that.

He will need followup visits every year with his craniofacial surgeon and/or craniofacial team, so I definitely want to choose wisely. This is not a passing phase, but a long term commitment. The decisions we make today will most certainly affect his, and our future.

But I digress.

So, back to his legs.

Don't they look amazing?! I can't get over how LONG they look (even with 3/4 of an inch cut out). They look completely different than the jumbled mess they once were. There's structure, there's form, there's beauty. There's hope.

He still needs a good bit of work on his knees, and I'm sure there will be many more surgeries to come. But for now, I'm going to revel in the before and afters of bath time, and remember how far (by God's grace) we've already come.

Ah..... 

Corban is TWO!

It's hard to believe, but my baby is TWO YEARS OLD today. Wow! Is that even possible? I guess it is. He's tiny, but he's TWO!

I briefly thought about writing "a book" on Corban's life to commemorate this occasion, but then quickly realized I don't have time for that! I've got to figure out how to get him to eat, what to feed him, how to juggle his therapies, his splinting, his casting, surgeries, doctor visits, emails, phone calls, paperwork, etc., along with the rest of life and its demands. So, the book will have to wait.

BUT I have heard it said that a picture is worth a thousand words. And while I don't have a thousand words today, I do have pictures!

 

 

 

 

 

 

 

Out for ice cream tonight....

 

So, that was it! Hope you liked my "book". Maybe next time, I'll actually use words. Or perhaps I'll just break out in a song. 

Like this! 

Happy birthday to you, happy birthday to you, happy birthday to my dear, wonderful, darling, ever-so-handsome and kissable and squeezable and all the above little baby boy Corban..... Happy birthday to you!!!

Hips, Before and After

We got an x-ray of Corban's hips this week, so I thought I'd show you the before and after mugshots real quick.

It's a bit hard to decipher what's going on in the above picture, but can you at least see the ball joints? Notice how they are NOT in socket and they are NOT pointing in the right direction? Well, here's what they look like today...
 

Beautiful! Simply beautiful.

Yet Another Surgery - on His HEAD!!

We found out this week that Corban has something called bilateral coronal synostosis. It means that the coronal sutures in his skull have prematurely fused together. Not good news.

Why?

Well, firstly it means that as Corban's head continues to grow, the bones will not be able to shift correctly, resulting in a misshapen head. I have already noticed his forehead bulging out, a significant difference from what it was a year ago.

It also means, more importantly, that his skull could restrict his brain growth, affecting his cognitive abilities (including memory, speech, communication, processing, etc.). His optic nerves could be affected as well, so there is the potential of vision loss. If untreated, the pressure inside his head could become painful, causing nausea, vomiting and even seizures.

So, really none of this is good news. It's down right awful news, to be honest. With everything that's happened these last few weeks (from the broken leg, to hip surgery last week, to fevers, to thrush, to peed casts, to half a dozen meds) I'm TIRED! Corban's tired. We're all tired. Not sure if we're ready to handle another major surgery just yet. But we're also not sure how much time we have to spare. The surgeon mentioned performing the surgery in 3-6 weeks, so it sounds fairly urgent to me.

He did mention two other possibilities for Corban, other than the original mac-daddy-forehead-removing, bone-cutting, brow-rebuilding procedure. There is a smaller procedure where they would be able to make a small incision in the scalp and take out the fused growth plate. But this surgery would not take care of his misshapen head, nor would it prevent his head from growing even more asymmetrical as he gets older.

The third option would be to wait and watch his optic nerves, to see if they start showing signs of pressure. The problem with this option is, how often are we going to have appointments with the ophthalmologist? Every 6 months? Every 3 months? And what happens if something changes in between the appointments? Do we risk permanent damage?

So, we're back to the original option. Not my favorite. But none of them are.

Oh, Lord! Give us strength for this path you've put us on. Help us find refuge in the shadow of your wings. Guide our footsteps as we walk this road with Corban, and lead us in the way we should go. Help us, Father! We need you! Amen.

Surgery, Sufferings and Recovering

Corban is resting well now. But it was a long day.

Surgery started yesterday at 12:30pm and didn’t end until close to 10 o’clock last night. The surgery was originally scheduled for 7 hours, but ended up taking about 9, as Corban’s hips and legs proved to be a real challenge for the surgeon. Though he’s done many surgeries similar to this one, Corban’s was, in his words, “the most difficult case.”

There were many reasons why it was so challenging, but probably the biggest one was that Corban’s hip sockets were deformed from having the ball joints resting behind them for so long. The ball joints made little indentations in the sockets, so they were not as rounded as they needed to be. This made it extremely difficult for the surgeon to fit the ball joints in socket. He told us after the surgery was over, that at one point he really thought about coming to tell us he just couldn’t do it. He just couldn’t get them to fit! But praise God, he didn’t give up. He kept trying and with much patience and much maneuvering, somehow he managed to get them in. I know this was the Lord’s mercy and the result of many prayers! So, thank you all for praying.

Thank you for praying for us last week as well! It was such a crazy week. But the break in Corban’s femur ended up not being an issue for surgery this week, as the femur would have needed to be cut anyway. The surgeon just cut the bone where it was already broken. Then he took ¾ of an inch out of each leg, rotated the bones, screws in the plates, lined up the ball joints, placed them in socket, stitched him back up and put him in a Spica cast (which he’ll be in for the next 6-12 weeks). Sounds easy, right?

No, not easy.

Corban did end up losing a lot of blood during surgery, as it was such a long procedure. So he had to have a “large” blood transfusion to compensate for the loss. But he recovered well and by the time we saw him last night, he looked nice and pink.

The anesthesiologist ended up sticking around until Corban’s surgery was completely over (I think she fell in love with him and didn’t want to leave), then set him up in the PICU with an epidural and a constant drip of heavy pain medications. Despite the heavy pain meds, he cried most of the night and thrashed his head from side to side. It took all night and half way into today before he really started resting and sleeping peacefully.  He was also pretty miserable half of the day with a fever of 103, but he’s doing much better now as the fever has since come down.

Sigh.

It really does stink, you know? The pain. It stinks. I really hate standing there watching him suffer and not be able to take it from him. It hurts a mommy’s heart! But, I think of how God must have felt to see his Son struggling so (on the cross), and know he couldn't take it from him either. To accomplish salvation, Christ had to suffer. To do great things, he first had to die.

So, as I sit and watch Corban tonight, I am hopeful for his future—knowing that this suffering will bring about great things. His suffering will accomplish something, just as Christ’s sufferings accomplished something. It is not pointless. It is not in vain. And our sufferings in this life are not vain either. With that, I am comforted.

 

Surgery is Here! It Has Come.

After waiting close to a year and a half for Corban’s hip surgery, it’s hard to imagine that the time has finally come. Is it really time? It can’t be! I’m not ready! I’ve only had a year and a half to get ready—that’s not long enough.

No amount of waiting or prepping will help. It’s only the Lord and His goodness that will get us through the long journey ahead.  For this surgery is just one of many, and tomorrow’s knife is not the last. One day I will go into more detail about some of the other procedures we are looking at as possibly in Corban’s future, but today, I will focus on tomorrow.

Tomorrow... will be a long day. The surgery itself should take about 7 hours. The hospital stay should be about 4-5 days. The Spica cast and recovery will take 6-12 weeks. And the plates the surgeon will screw into his legs will take 18 months. So, tomorrow... will be a long day.

But it’s already been a long week. To our surprise, Corban wriggled his way off our bed last Tuesday night and into the ER with a broken leg. His leg fractured in two places, so we were sure the surgery that we’ve waited so long for, would be called off. But thankfully, the main place it fractured is approximately where the surgeon would be cutting his femur anyway, so he will still be able to do the surgery! Praise God! And there have already been so many things like this that have happened this week—things that started out very bad and the Lord worked out for good—that I take comfort in knowing He will work this surgery out for good as well. 

That’s not to say we shouldn’t pray! We NEED you to pray tomorrow! Please pray.

Pray that Corban would be the tough guy that he is, and make it through the surgery, anesthesia and recovery. Pray that he would be protected against infection. Pray that the doctor would be well-rested and ready for the long day ahead. Pray for wisdom. Pray for strength. And grace. And strength.

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)