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.