Fears Confirmed

I feel like I've just been punched in the gut and can't catch my breath.

Although I've wondered it for quite some time, it wasn't until today that my fears were confirmed. It wasn't until today that I learned there is a solid explanation why my son isn't like the other kids with his diagnoses. 

There's a reason the other kids with Sheldon-Hall syndrome are able to walk, while Corban can't even hope to sit on his own. There's a reason the other children with arthrogryposis multiplex congenita are able to find a way to get around (however limited it may be), while Corban is stuck in his chair with no mobility whatsoever. There's a reason the other kids with craniosynostosis are able to communicate with their parents just fine, while Corban has no way of communicating with us, other than laughing or crying. The reason these children are not like Corban and Corban is not like them, is that Corban has Cerebral Palsy.

My little boy, who could have been cognitively normal, is now getting ready to face his 5th birthday without a single word in his vocabulary. When he's ill and doesn't feel like eating, Corban can't tell us to stop pumping his sick belly full of food (via g-tube). When he's hungry again, he can't tell us. When his head hurts, he can't tell us. When he is lonely or scared, he can't tell us. There is soooo much that he can't tell us, and there's even more that we can't tell him - all because his brain was irrevocably damaged.
 
I've cried more today than I have in a long time. The thought of what could have been and the realization of what is, haunts me. I feel angry. I feel guilty. I feel deflated. I feel confused.

Why me? Why Corban? Why us? Do we really we need one more thing? Is the list of diagnoses not long enough as it is?

Could we have prevented it? That is my biggest question. I'm not 100% sure, but I think his brain injury may have happened the day we almost lost him. What could we have done differently? Did we do everything we could for him? The questions will probably always plague me. The ramifications most certainly will.

I Am Making All Things New

"And I heard a loud voice from the throne, saying, 'Behold, the tabernacle of God is among men, and He will dwell among them, and they shall be His people, and God Himself will be among them, and He will wipe away every tear from their eyes; and there will no longer be any death; there will no longer be any mourning, or crying, or pain; the first things have passed away.' And He who sits on the throne said, 'Behold, I am making all things new.'"  Revelation 21:3-5a

That is my hope. It's what I rest my hat on at the end of the day. And it's what I celebrate on this Easter Sunday.

"I (God) am making all things new." 

 

 Is that your hope too?

Eosinophilic Esophagitis - Say That Ten Times Fast

e-o-sin-o-FILL-ik (eosinophilic)  uh-sof-uh-JIE-tis (esophagitis)

Ten times fast.

Ok, now, GO!

If you can say that mouthful of medical terms at all, let alone ten times fast, you are doing better than I. Truthfully, I had to ask the nurse about ten times to repeat herself, simply so I could write it down. Actually being able to pronounce these words, however? Well, that's another story.

The biopsy results from July's procedure took a little longer than expected, but I assumed the results would be normal as the scope looked fine. Corban's esophagus and stomach both looked so nice and pink in the pictures, so I figured all was well.

But all is not well. Corban has something called eosinophilic esophagitis,  EE, or EOE. Any of those terms describe the same thing: a build-up of white blood cells in his esophagus. Basically, there's a war going on inside of his esophagus.

This white blood cell "war" might explain why Corban fights eating so vehemently. It's probably quite painful for him to swallow, and food likely gets caught on the way down. It would also explain why he has frequent issues with vomiting (the bane of my existence, in case you were wondering).

Trying to determine the root cause of the EE will be a bit of a journey, however, as it could be any number of things. Food, allergens, or acid reflux, are the main reasons one might have EOE. If left untreated, it will only get worse and damage his esophageal tissue.

So, here we are again. One more challenge to face. One more thing to test. One more doctor to "poke and prod" my already traumatized son. One more reason to call out to God.

 

So, here I am, calling out.

 

 Lord, give us some answers! Help us know how to help our son. We tire of his tears. We hope for greater joy and less pain. Give us strength in the meantime. We love you and thank you for this chance to make a difference in his life. PLEASE, let it make a difference!
In the name of Jesus. Amen.

Happy Birthday, Birthday Boy!

My little boy is FOUR YEARS OLD today!! How did that happen?!

  

Well... I suppose we've been a little distracted by these two loonie birds. 

 

We've also been distracted by Corban's handsome face and unmatched charm. "Oh, da'ling..."

And Corban's baby sister is a highly skilled and dangerous weapon of mass distraction. KA-BOOM!

 

Between all four of them, we..... are......never.......bored!  

 Good thing Daddy's a pro!

And good thing Corban's not afraid of fire. Because that cake is LOADED with candles! One... two... three...

FOUR!

 

Triple Surgery Day

This picture was taken 2 weeks ago, on Arthrogryposis Awareness Day (June 30th). It was taken on a day where we were all happy, enjoying life, and wearing blue to celebrate the day. It was a day where Corban was enjoying life as well.

Tomorrow is not a day where Corban will be enjoying life. Tomorrow is not a day where we all will be having fun. Tomorrow is a day where Corban will undergo anesthesia and have THREE different surgeons cut him open. It will not be a fun day. :(

But...

It will be a good day. A day of promise. :) I hope!

I hope that the Ophthalmologist will have success in straightening Corban's wild eyes so he can see the world better (strabismus/eye muscle sugery). I hope that the Gastroenterologist will give us some answers as to why Corban throws up and fights eating so badly (endoscopy of esophagus, intestine and stomach). And I hope that the Otolaryngologist (ENT) will be able to help Corban with his hearing issues and ultimately with his speech and feeding issues (tubes in his ears, nasal endoscopy, adenoid removal).

If you're like me, your heart might be a little heavy for Corban today as you imagine all the surgeries he's endured and will endure in his life. But don't just think of the pain! Think of all the good things that could come from a day like tomorrow. Think of the potential for improvement. And hope for it! Always hope.

Arthrogryposis Awareness Day - June 30, 2015

"Arthro-gry-po-sis" is a word I would have never heard if it had not been for my son, Corban.

I did not know about the 400 different causes for AMC (Arthrogryposis Multiplex Congenita) or the fact that 20-30% of kids with AMC do not survive their first year of life. I would have not known about bilateral hip reductions, spinal casts, AFOs, KAFOs or a thousand other things. But neither would I have known my son's amazing smile and contagious laugh.

So, on this day, Arthrogryposis Awareness Day, I thank God once again for giving Corban to me. The Lord could have very well taken him from us that first year, but He didn't. Almost 4 years later Corban is still here and smiling. :D

To celebrate his amazing smile and continued presence in our lives, I'd like to share some photos of Corban that photographer Rick Guidotti (Positive Exposure) took of him last November. They truly capture Corban's unique features and awesome personality.

Browse through them with me, and SMILE! And tell someone today about little Corban and this very long word that you now know because of him. "Arthro-gry-po-sis!"

Thumb-nails

I think about this blog. I do. I just don't have time to care for it like I want. I have 4 little ones to care for now, and they take A LOT of my time! 

Actually, I am beginning to think there is no such thing as "my time" anymore. It's either "their time" or "our time" but hardly ever "my time." My life is so bound up in my family, that there's very little of just "me" left. 

And that's ok!  

As John the baptist said of Jesus, "he must increase, and I must decrease." While I am not John the baptist and my children are not Jesus, that phrase still resonates with me as I spend my days dying to myself, serving my family, and praying that as I "decrease" my children ultimately will "increase."

That is a mother's hope! That her children will grow, thrive, succeed... 

It's easy to feel success with my 6 month old. She's growing by leaps and bounds and doing something new almost every day. It's easy to feel success with my older two. They're tall, healthy, strong, and so smart! 

The one I have the most trouble with in the day-to-day bog of life is, of course, Corban. The progress is painfully slow, and it's hard to see the forest for the trees most days. I get discouraged. I feel like giving up. I have a hard time recalling ways that he's changed for the better, as I often think of the ways that he's changed for the worse. Or hasn't changed at all.

That is the reason I pay any attention to this blog in the midst of my busy life. The reason I share what I do. I want to remember where Corban has come from, remember where he is today, and remember that he IS making progress. God IS doing something with him.

So, today, I will share one way he's changed. I will think about one way he's different than he used to be.

Corban's left thumb used to look like his right thumb.

  

But 4 months ago, he had surgery. He spent 4 weeks in a cast.

 

When the cast came off, we saw "pins."

 

Which, really, were more like "3 inch nails." 

 

 He had wounds that needed to heal. 

 

But they have. They've healed. They've changed. 

  

And NOW, his hand looks like this!

  

It's different than it used to be. It's better than it used to be.

Don't let me forget.

Getting Creative

I promise, cross-my-heart-hope-to-die that I WILL update the blog soon. I am just finding it harder and harder to carve out a time as well as carve out my thoughts, while wrangling 4 kids, nursing, homeschooling, making dinner (occasionally), and breaking up potential life-threatening fights.

SO, instead of a long update, I thought I'd quickly post a picture of Mr. Corban borrowing his baby sister's Jenny Jumper for a few minutes.

I post this picture because lately I have been trying to think of creative ways to get Corban moving. It's not the struggle a mom usually faces with her toddler, I know. But it is mine. So, here we are today, trying out new equipment and stretching our minds to get a little more creative with the way Corban spends his awake time. I hope he appreciates our creativity and shows a little creativity himself.

Charis Renae is Here!

You know you've just had a baby when you find yourself a month behind in everything. So, yes. Our little girl arrived over a month ago. September 25th, to be exact.

First, let me start by apologizing to everyone who thought you might find us in the Guinness Book of World Records for the longest pregnancy to date. Although it felt like that, it wasn't. Just a mere 42 weeks! That's all. ;)

Although she took her merry ol' time in getting here and had a bit longer to cook in Mommy's belly than typical, she was a lot smaller than the doctor expected her to be. At only 8lb. 1oz., she showed herself to be more petite than her eldest brother (who weighed a solid 9lb. at birth) and only a couple ounces more than her sister (who weighed 7lb. 15oz.). Corban weighed 5lb. 1oz., so she definitely had him beat - but obviously, that's different. 

Second, let me be the first to admit that I am 100% head over heels, googly-eyed, take my breath away IN LOVE! This baby girl has brightened my world in more ways than I'd ever be able to list on this short blog post. I'd really have to sit down and have a good heart-to-heart gab session for a few hours to recount all the ways she's brought me joy and filled my heart with good things. She is a tangible expression of God's smile on us and has been a healing balm in our lives.

From holding her and not having to worry about broken bones, to rocking her and not being in danger of knocking out a chest tube, to snuggling with her and having her "snuggle" back (instead of being scared or in pain), to nursing her and not having to worry about her aspirating, to kissing her and not having to dodge a bunch of ventilator tubing, to hearing her coo and taking heart in the fact that she won't have to undergo hours of speech therapy just to make a couple babbling sounds, to feeling her strong legs kick and the relief of not having to worry about painful surgeries or the possibility that she might never be able to walk, to watching her smile and knowing she's not afraid of me - her own mother, this baby girl has soothed many wounds and healed many sores. She has been a tangible expression of God's grace and goodness.

Which is what leads me to her name and why we chose it. From the first ultrasound where we saw her kick and flip and turn, and knew "it was all going to be ok," we felt a strong sense of God's mercy in giving us this little one. A strong sense of healing and grace.

So....
we named her Grace! Well, sort of. "Charis" is the Greek word for "grace," so it's close enough. Charis means, "that which affords joy, pleasure, delight, sweetness, charm, loveliness... good will, loving-kindness, favor..."

Her middle name likewise carries a redemptive meaning. "Renae" (also my middle name) means "reborn." Put the two names together, and you have "grace reborn." And that's exactly how we feel about this beautiful little baby girl. In her, God's grace has been reborn in our lives.

And that's not to say Corban ISN'T an expression of God's grace in our lives. He most certainly is! Just the fact that he survived, is evidence of God's grace. And that fact that he's come as far as he has? Also, major evidence of God's grace.

It's just different.

So now that that's established, I'm sure the big question you all are dying to ask is, "what does Corban thinks of his little sister?" Well, I think it's safe to say, she's growing on him. :)

Corban is THREE!

Three years today. Three years since this amazing little boy entered our lives. Three years of ups and downs and all over the places. But I wouldn't trade him for anything and I wouldn't trade these last three years either. At least most of it. :)

And while I could spend hours waxing eloquent on these last three years (or rather, TRY to), I don't have hours to spend. Instead, I'll share a few snapshots from Corban's birthday party and leave the rest up to you.

Happy birthday, my little baby love! You are unique in so many ways and special to me. You bring joy to our lives and chase away the darkest of clouds with your laugh. Your sweet spirit is truly a gift from God, as YOU are a gift from God. I will celebrate every year I have with you and thank the Lord above for giving you to me. 

So, to this birthday and every birthday to come...

Let's CELEBRATE, Corban Levi!!!

Trip #15

This. This is why I am making my fifteenth trip up to Philadelphia today:

Corban's spine is not getting any better. In fact, it's getting worse. The last time the doctor measured it, Corban had a 37 degree curve in his back. Three months earlier, it was 31 degrees.

So, we are flying up today to get his spinal cast put back on and hopefully prevent it from getting any worse.

After the formula laden fiasco last month, we had to get Corban's cast taken off (after having it on a mere 3 weeks). This time, we will be MUCH more careful and hopefully have it on at least 3 months before going back up to get a replacement.

This. This is another reason I am making my fifteenth trip to Philadelphia today: 

Corban's leg is infected...  again. That makes five times, since his surgery last June. FIVE times of nasty drainage, redness, topical antibiotic creams, warm compresses and 10-day rounds of antibiotics. We're done!

Why does he keep getting infections? The doctor suspects there is something internally that is not allowing his leg to heal properly. Maybe something on the steel plates? Maybe something else. Who knows. Regardless, the plates need to come OUT, before he gets MRSA again for the sixth time. 

So, here we are. Trip #15.

I'm exhausted already, just thinking about it! 

Needless to say, I could use some prayer today. Being nearly 6 months pregnant and venturing through the airports alone, the anesthesia and the tears, is rather intimidating. Praying God gives me the strength I need to make this trip, and all the trips to come. 

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!!!!!!!!!!!!!!!

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.

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.