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The Nature of a Surprise


I think most often when we hear the word, "surprise," we think of parties, vacations, and gifts. All good things, right? Well, I guess it depends a little bit on the circumstances, doesn't it?

What about the surprise birthday party you show up to with absolutely no makeup on, your greasy hair pulled back in a ponytail, and your ratty ol' sweatpants you threw on right before you left the house? Or the backpacking "vacation" your husband excitedly surprises you with, when you don't have nearly the same enthusiasm he does about roughing it. Or the secondhand gift your great aunt Ruth lovingly gave you for Christmas last year. The one where you had to fake smile when you opened it and say "awww, thank you so much! That was so thoughtful of you!" but then donated it to Goodwill a week later? Yeah, that one.

Those are all surprises. But at the time, we're not really sure if they fall in the "good" category or not.

Well, at the beginning of the year, my husband and I received a surprise. A big one! After taking a pregnancy test mid-January, we realized how big of a surprise it was.

We were pregnant! A good thing? Well, at the time, we weren't really sure. Our calendar was already filling up for the year, with appointments for Corban, homeschooling commitments, daily life juggling acts, therapy visits, and more appointments for Corban. Could we fit a baby into the schedule??

There was also the slight sense of panic that came over me when I thought of something similar happening this time around that had happened the last time God decided to give us a very special gift. After this great meat-grinder of life that God put us in by giving us Corban, we were nervous and a bit shell shocked at the thought of what this new little one might bring.

Let me insert a quick note here. We love our little Corban to death! We are super thankful to have him in our lives! He IS a special gift from God and we wouldn't trade him if we could. When I talk about the difficulties of having Corban in our lives, I do not in any way wish him out of the picture. It's just really, stinkin' hard sometimes.

So, in my midnight prayers and contemplations about this new gift, I told the Lord, "I think I can handle another baby. I think I would even enjoy another baby. Another baby would bring a new joy to our lives and a feeling of redemption over what was lost. I could handle that! I just can't handle another 5 month-long NICU battle for my baby's life, mixed with the strong and sobering reality of a lifelong commitment of care, surgeries, therapies, etc. I'm not ready for that again."

Toward the beginning of March we went in for a 12 week ultrasound, and I held my breath the entire time. The ultrasound tech pulled up the image of our baby on the screen, and while it was great and all to see there was a baby inside of me, I didn't see any movement.

"Can we see movement this early on in the pregnancy?" I nervously asked. "Absolutely!" she replied. She then proceeded to rapidly (but gently) hit my belly with the ultrasound device. Great sighs of relief came over us, as immediately we saw one leg kick, then the other leg, then an arm reaching, then fingers stretching, then finally a great-big-back-arch and a roll-to-the-side grand finale. Our baby was healthy and very active! Hallelujah!! We didn't have to worry any longer. We didn't have to wonder any more.

At that point we mustered up the courage to start sharing the news. After a couple weeks of surprising some of our friends and family members, we finally told the kids.

I think it would be a gross understatement to say they were excited. All of them (even Corban) were thrilled! And right away, "everyone" started asking for a girl.

The biggest cheerleader of course, was our daughter. She has asked for a sister for the past year or so and has begged and pleaded and pleaded and begged that we give her one. I've told her many times that there's always a chance we could adopt and perhaps she could have a sister then.

But when we told her we were having another baby, she right away declared, "I hope it's a girl!!!" And of course, everyone around her joined in the chorus: "I hope it's a girl! I hope it's a girl!"

The more that we declared, "we hope it's a girl" the more nervous I became that it wasn't. After all, God doesn't always give us what we ask for. In fact, He often doesn't give us what we ask for. He has an uncanny way of dishing up big ol' plates of Brussels sprouts instead of the Snickers bar milkshakes that we request.

So, when we went in for our 18 week ultrasound today, we were all hopeful, but preparing ourselves for the real possibility that it might be a boy.

Which one would be better for us? A baby sister for a very hopeful daughter? Or an active brother for a son to roughhouse with? We were all anxious to find out! Ultimately we couldn't determine these things. It was in God's hands.

So, what did the good Lord choose for us, you might ask?? A healthy plate of Brussels sprouts or a delicious Snickers bar milkshake?

To our great surprise, He chose for us.......
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A GIRL!!!!!!!!!!!!!!!
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Spinal Casting

This time next week, Corban and I will be on a plane, headed for Philadelphia, to begin a new journey together. The journey? Spinal casting.

Background to the journey:

The last time we went to Philadelphia, I asked Corban's doctor about his spine. While he didn't think it looked too bad on the surface, he still wanted to get an x-ray just to be sure. Half of me really regrets asking him about it that day, as the x-ray revealed Corban's scoliosis was much worse than we originally thought. Lying down for the x-ray, the curvature of his spine was 31 degrees, which means... sitting up, it's much worse.  We're not exactly sure how much worse, but 31 degrees is bad enough to warrant intervention at this point.

So, like I said, this time next week we will be headed for Philly to begin the journey of spinal casting. 

Why spinal casting and not something else? Well, there's a chance the doctor can achieve some correction of his spine through casting - which would be amazing! Will the casting correct his spine for sure? No. There are no guarantees that it will work. But it might! And if it doesn't, at the very least, the casting will prevent his spine from getting worse (which will make for less invasive treatments down the road).

How long is this treatment?

We will be casting his trunk for about one year, traveling up to Philly and changing it out every 2-3 months. After that, Corban will wear a brace for about one year, and then at that point we'll decide what to do next, depending on how his spine looks. 

It would be absolutely LOVELY if I could tell you Corban won't ever need to have scoliosis surgery. And it would completely MAKE MY DAY if this spinal casting thing would correct his spine enough to avoid having to have rods put in his back one day. But the truth is, I really don't know what to expect. And neither does the doctor. It really just depends on how Corban responds to treatment and how his curve progresses, before anyone can say whether or not he'll need back surgery at some point. Like I said, I hope not!!

As far as what the spinal cast entails, I'm not 100% sure yet myself. I know it will take some getting used to, for all of us. I know it will make for a very hot summer for Corban. I know it will make for a very stinky baby who will no longer be getting baths (yuck, I know!). I know it will be a pain to travel up to Philly every few months to change it out. But there are still a lot of things I don't know about spinal casting, and won't know, until we cross that bridge.

As far as what it looks like, the best I can do is show you this picture I found on the internet (hoping it's ok that I swiped it). As the picture below shows, the spinal cast will end up covering his whole trunk area, from shoulders to hips, with a cut-out in the front for his belly and g-tube. It will probably be uncomfortable for a little while, until he gets used to it. But eventually, he will get used to it. And so will we.

Unfortunately, it is not a simple thing to put on, so Corban will need to be put under anesthesia in the OR, as it's technically considered "surgery." It will also mean an overnight stay in the hospital, which is just one of my very favorite things to do in life. NOT! :P

In addition to spinal casting, we might be looking at hardware removal next week. Much to our dismay, Corban has had repeated infections in his leg since his hip surgery last June. So the doctor is considering taking the plates out of his legs early to try to put a end to those pesky infections. Not sure what he'll decide once he sees him, but it is definitely a possibility for this trip.

This trip. This trip will be the longest trip I've ever had to make by myself - 5 days, instead of the usual overnight stay. This trip will be the first where I'll be spending the night in the hospital with Corban, alone. This trip will be the first where I face the dreaded OR alone (at least for anything major). So, needless to say, I'm startin' to get a little bit nervous about this trip.

So please, if you think about it, pray for me this time next week as Corban and I fly out. Pray that we would not be alone this trip, and that God would be to us a "very present help in time of need." Pray that Corban would do well under the anesthesia and recover quickly from all the drugs + trauma. Pray that he wouldn't have difficulty breathing as a result of the cast and that it would not cause him too much pain. Pray for strength - for little Corban, and for his momma, who's feeling pretty little herself right about now.
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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.

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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.
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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!

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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.

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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.....