MRI Results

After a month-long struggle to get Corban's MRI to the appropriate doctors, we finally met with his cranio-facial surgeon last week to discuss the results. Did he have good news for us or bad news, you might ask? Well...
 
It's hard to say.

The doctors did say that there really wasn't anything on the MRI that would explain a mental delay. And that for the most part, Corban's MRI was a perfectly normal brain scan. So, that's good news!

BUT, the bad news is that the coronal sutures are most certainly fused and are not going to resolve themselves (unless God does a miracle). So this problem will continue to be something we'll need to watch closely, possibly for years to come.

Intracranial pressure can become an issue for Corban at any time. Unfortunately, it is also an extremely difficult thing to measure/diagnose. There's really no way of telling for sure how much pressure is building up inside his skull, so the best we can do for now is to watch his optic nerves for any signs of distress. Also, when he becomes more verbal, he should be able to tell us if he's having any headaches/nausea or other issues that would expedite the need for surgery.

BUT, as far as I can gather from the surgeon, there is nothing on the MRI at this time that would warrant a major skull surgery. So, that's good news. The surgeon even went so far as to say that Corban might not ever need the surgery, which would be AMAZING! Nothing's for sure yet, but there is the possibility that he won't ever need it.

UNLESS, of course, the surgeon is wrong and we need to be looking for a second opinion right now. Which would definitely be bad news. :(

Ugh! These things are so hard to sort through. We truly need wisdom from God in making these big decisions for our little guy. All of this is so far above and beyond us! We need His eyes to see things we can't. We need the Good Shepherd to direct our steps for us. We need Him.

Happy New Year!!

Corban woke me up this morning and asked if I would please share some of our recent family pictures with you, to start the New Year off right. Well... who am I to say no?

Here ya go, Corban! For you, baby. ;)

 Happy NEW Year!! Love, us.

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.