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. :(


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!"



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.

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.