Monday, January 7, 2013

Ryan Decker 2013 Update

It is been almost 1 year since Ryan first began declining in health.  Can you believe that?  If my memory serves correctly it was the last week in March 2012 that we began seeing symptoms and he grew so terribly ill.

I'm both amazed and devastated for him, for us, when I think back on the last year.

But this isn't a post to drag you down and bum you out.  No way, because we are CELEBRATING the progress Ryan has been making since being released from his 2nd hospitalization in November 2012.

Ryan on a recent hike.  Hiking, even walking, was sometimes unimaginable just a few months ago.  By he way, that bulge in his shirt is his ileostomy, not a milkshake gut-ha!
  
He has gained healthy remarkable weight and muscle mass.  His appetite is increasing and steady.  There are so few dietary limitations I can tell you just don't feed him stringy/pulpy things (oranges, steak, celery, etc).  Wow, praise God!

We used to struggle with his ostomy like you wouldn't believe.  It was a daily source of stress and tears (for me) when things did not apply correctly or it failed him and caused leaks, itching or the like.  I can honestly say that now we LOVE his ileostomy and have our rhythm with it.  We know the equipment to use, we have a routine to get it on and off, and can troubleshoot most dilemmas with ease. 

There are no leaks, burned skin, frustrations, or mishaps.  Those are far and few between.  We love the freedom this surgery has given our lives and the health it has restored to Ryan.  

His next Remicade round is January 18th.  We always look forward to those transfusions because it does seem to boost his health a bit.  Like a little shot of energy.  Actually, an enormously expensive 3 hour IV transfusion of drugs...but same thing right?

 Ryan and his older brother Clint at Christmas

The next major aspect of Crohn's on our radar will be around March.  Dr. B (our surgeon) wants us to begin considering an ileostomy reversal if Ryan is well and improving.  I don't think there is enough money in the world to convince us to go back to "normal".  We have read horror stories about reversals with people running to the bathroom up to 20 times a day, going back into horrible flares, and losing their sense of independence as their bodies will never be fully the same again after an ostomy.

Our prayers are heavy with this topic but for now we are pretty firm "no's" on this decision.  If you or someone you know has had a positive reversal story please have them message us!

So overall Ryan is doing superbly in body and spirit.  I am a broken record with this next sentence but here it is:  Yes, Ryan is improving, NO he will never be cured.  When we say "better" we don't mean "healed".  Those two words are not interchangeable in chronic illness.  Praise the Lord for restoring his health in pieces and seasons but we cling to Him for more wisdom and endurance.

Our battle isn't over.  More updates to come as we meet with Dr. B again soon and Ryan gets Remicade.  Thank you for caring about my husband.  Prayers are continually welcome :)

Be not wise in your own eyes;
    fear the Lord, and turn away from evil. 
 It will be healing to your flesh
    and refreshment to your bones.

Proverbs 3:7-8


6 comments:

  1. Carly and Ryan, Thank you for sharing this journey. I, and I am sure countless others, admire your strength, courage, and faith in the face of such overwhelming challenges. I continue to pray for you daily, and am so proud of the strong, loving couple you have become.
    Love, Aunt Nancy

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    1. Thank you Aunt Nancy. That is so sweet and encouraging. Thank you for your prayers and support. This journey has been excruciating but more bearable with the love of family and friend around us :)

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  2. This has certainly been a long journey, but one that has been tremendously encouraging for me, just to see your attitudes and strength through it all! I look forward to this year and more good health updates! :)

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    1. You have blessed us so much Vee with your sweet words and prayers. We don't feel all that strong most of the time but the Lord provides what we need daily

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  3. Glad things are going better for you. We prayed several times for your health and your wife. Think about you guys often.

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    1. We appreciate that James! Hope you, Carly, Bailey and Baby #2 are doing well! We think about you guys often.

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