Waiting Is Not Easy…….

It has been a while.  A VERY long while.  I actually can’t quite believe I have let blogging go this long but I did have my reasons.

It has been an insane past few months since I last updated y’all.  When I let you know about Cannon’s new diagnosis.  Since that time, we have been researching up a storm, calling and meeting with all of Cannon’s current doctors, getting lots of advice from parents, friends, and other medical professionals, seeking out potential new doctors, talking with the insurance company, having long, detailed conversations with our nurse case worker through our insurance company, and spending a TON of time on our knees trying to figure out what is the best, next move for Cannon.  See, we tried to come up with a new regiment that would ease Cannon’s Gastroparesis.  The harsh reality is that there is not much that can be done.  It is a chronic, painful, life-altering, life-long condition with very few treatment options.  We tried a couple of different medications.  Even tried to get a couple more that are only available in Canada.  Nothing worked.  We tried some other things like smaller, more frequent meals and a liquid diet.  Nothing helped for more than a few days.  He is just so beyond miserable.  It has been a heartbreaking, heartbreaking time in our lives.  The hardest part has been the waiting.  Long, LONG periods of waiting to get calls back and action from one of his doctors.  And when we have gotten them……we were told there was nothing more that could be done for him.  Well, that is just plain unacceptable.  HE IS 7 YEARS OLD!  We can’t just give up on any kind of quality of life for our 7 year old!  So, as previously mentioned…….I researched!  And it didn’t take long to figure out the direction I wanted to go next.

After Mark and I discussed what seemed like the best option, I made the first phone call to Nationwide Children’s Hospital’s Pediatric Motility Center in late May.  A Dr. Carlo DiLorenzo seemed to be the go-to specialist in this field and is located at this hospital in Columbus, Ohio.  You can have a look here…..if you so desire……..

http://www.nationwidechildrens.org/motility-center

I was informed that I needed a referral and to have all of Cannon’s records transferred to them.  Then, their team of docs would sit down with all of this information and decide……..

a) if they can help him at all

b) if they need additional testing to determine treatment

c) if he is a candidate for surgery or one of their other cutting edge procedures

The first major hurdle to jump through was getting that referral.  It seemed like an easy enough task and I don’t want to get into it too much online but lets just say a lot of things that had nothing to do with Cannon and his needs got in the way. Fortunately, we have the world’s greatest pediatrician who made calls and got things going after we waited months (yes…..MONTHS) to get this simple step done.  There was soooooo much more that went on behind the scenes that I’d rather keep private.  And these experiences were the main reason for my blog silence.  Anyhow, when that was FINALLY done, we got a call as to what day his case would be evaluated.  We hit our knees big time and asked friends to pray with us as well!  I was told it would be done on a Friday morning and would hear news that afternoon.  No call.  It took one incredibly, long anxious week before we heard the news we were so longing to hear!  YES!  THEY SAID YES!!!!!!!!  They would take on Cannon’s case!  It was the most wonderful news!  We could not have been more thankful!

But there is a but.  BUT now, we get put on a waiting list.  We are “scheduled to be scheduled” as she put it.  They will call us one month in advance to get everything scheduled to bring Cannon out from Arizona to Ohio for testing.  Currently, the Nationwide team has 5 tests planned.  4 new tests and one repeat test of one done previously here.  This facility is THE place to go for this pediatric condition.  And they are inundated with cases.  So, we have to wait our turn.  No matter how bad off he is.  I was a little sad.  I had hoped that maybe because they knew we were struggling to get the referral for those months…..that maybe that time would count as our waiting period and we might jump to the top of the list.  But, no such luck.  3-4 months was what we were told one month ago.

So, how can I possibly explain to you how tough it is to wait.  My child’s sparkle, his joy, his light is slipping away.

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He spends most of his time on the couch…..lethargic and pathetic.  And when he isn’t, he runs around like the Tasmanian Devil and I just know that he is trying to deal with the fire that is blazing inside of him in his own sensory way.  There are other times when he is still and calm but his cheeks and ears will get crazy red for no reason.  He has also had periods of several days at a time where his face and body will get incredibly warm but his limbs will be cold.  His pediatrician thinks this is a response to pain.  Sigh.

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He is beginning to show signs of depression and also anger.  Which is almost exclusively directed towards me.  But, I can’t blame him.  Mommies are supposed to fix things.  And I haven’t found a way to.  He has developed some behavior that is similar to a tic. Yelling mean phrases at me in repetitive way with a frantic, anxious look on his face.  We are going to see his neurologist this week about that.  He sleeps often.  Like really often.

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Throws up a lot.  He is on a mostly liquid diet although we do throw in some food once in a while just to give him something enjoyable.  He throws up a lot less when on liquids.  But it doesn’t seem to help with the nausea or pain.  On average, he will have to leave the table to lie down 3-6 times during each meal.  And will also need to lie back down for a while afterward.  We have been to the ER when things have gotten really bad.  But there isn’t much anyone can do for him.

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He has told me on several occasions that he is “dying.”  When I ask him why….he says “because I’m sick.”  The bottom line is that he has no quality of life right now and is very aware of that fact.   He is not even close to thriving…….he is merely surviving.  And MAN, that is one hard thing to watch!  Sunday, after an incredibly tough morning, I looked back on our drive to church.  This face made me just want to shatter into a million pieces.

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But I can’t.  I give myself brief periods in which to get my emotions out.  But there has to be a time to shut it down.

He needs me to remind him of scriptures like these……

“Wait on the Lord.  Be courageous, and He will strengthen your heart.  Wait on the Lord!”  – Psalm 27:14

“I wait for the Lord, my whole being waits and in His word I put my hope.  I wait for the Lord more than watchmen wait for the morning.” – Psalm 130:5-6

“But they that wait upon the Lord shall renew their strength.  They shall mount up with wings as eagles, they shall walk and not grow weary, they shall walk and not be faint.”  – Isaiah 40:31

“I wait patiently for the Lord and He inclined to me and heard my cry.”  – Psalm 40:1

“Therefore, I will look unto the Lord.  I will wait for the God of my salvation.”  – Micah 7:7

“The Lord is wonderfully good to those who wait for Him.”  – Lamentations 3:25

“The Lord upholds all those who fall and lifts up all who are bowed down.”  – Psalm 145:14

And a few quotes like these…..

“To us, waiting is wasting.  To God, waiting is working.”  – Louie Giglio

“It is wise to wait upon the Lord in order to receive his clear direction for our lives, to keep in step with His timing, to prepare us for what He wants to give us in life, and to sift our motives.” – Charles Stanley

And to guide him through the teachings of great men of God like Dr. Stanley.  Who also tells us HOW to wait here…….

http://www.intouch.org/you/article-archive/content?topic=how_should_i_wait_upon_the_lord_article#.VFAst-dGy0B

Long story short……we are in rough shape.  Our hearts are heavy as we watch our sweet, loving child be reduced to an angry, even more distant, lost little one.  We could use your prayers!!!!!!  And we definitely need to get to Ohio sooner rather than later.  But God is good…..all the time!  We are still standing and we will get our sweet baby through this!  

Y’all know I use music to uplift and inspire me.  Here is a current favorite song of mine.  One that I am absolutely and completely clinging to right now………Let it minister to your heart today!  Love you ALL!

https://www.youtube.com/watch?v=Bb7TSGptd3Y

 

 

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