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...



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.