Monday, March 5, 2012

It's Official - A David Update!

We are officially diapering for one!


Go David!

And in addition to the normal happiness involved when a toddler learns to use the bathroom, Brian and I are so thrilled and thankful that not only has he learned it at two and a half but that he was able to learn it at all.  Since being diagnosed with Hirschsprung's Disease last year, we were uncertain whether he would ever be able to function normally in that department.  Hirschsprung's is a disease a baby is born with where they lack the normal nerve cells found in the intestines.  It can affect part or all of the baby's intestines and can be fatal.  Normal treatment when diagnosed during the newborn time is immediate surgery to remove the affected portion   which has the potential to work (usually).  But there are many cases where it does not work at all or it makes things worse.  (You can read about our journey with HD in three parts here, here, and here.)  I share this not only so that I have a record of our Hirschsprung's story but also in the hope that someone else in a similar situation may benefit from reading it. 

Because he lacks the ganglion nerve cells in part of his intestines that trigger the need to go, we didn't know if he'd ever be able to control things, especially compounded by his need to be on medication to ensure that he does go.  It's always been lurking in the back of my head that perhaps he would never be able to control it, which would obviously greatly affect his quality of life and ability to function normally as an adult.  We are so thankful and blessed that that is not the case!  The first time he got that look on his face and ran to the bathroom for the big job, it was such a huge relief and I thanked God for what He was doing for our little David.  The fact that he CAN feel some sensation and control it in time to get to the bathroom is amazing.


In recent weeks I've also been lowering the dose of the Miralax I give him daily and he is still going and regular.  We are down to half a dose.  My hope throughout all of this has been that somehow we could help him learn how to make himself go once he was of the age that he could understand what that meant.  And it seems to be happening.  I don't know if he'll ever be completely off the medication but we will continue to pray for that.

We were told when he was diagnosed and in every attempt to learn about HD that surgery is the only option.  That never jived with us since we had heard stories of people not being diagnosed with HD until their teens, so somehow, they were living with it all those years.  Now, HD can be fatal, especially if it is long segment and not treated.  While we never got the official word on how much of his intestine is affected, my educated guess is that he has short or ultra-short segment due to the way his symptoms manifested and the fact that we've been able to control it solely through an over-the-counter medication.  He has also never once gotten enterocolitis which is the huge risk of children living with Hirschsprung's both before and after surgery.  The doctors were pretty stunned that we had lived with it (unknowingly until then) without one infection.  I have my own theories as to why that is ;)

I am SO very grateful that we waited, did our own research and used logic before simply putting our son through surgery.  While it could have worked, there are very real risks that it could have made things a whole lot worse and our son would have never been able to have normal bowel function and would have had to wear a diaper for the rest of his life or been at constant risk for a dangerous intestinal infection.  God has blessed us indeed and is listening to our constant prayer for his healing.


So, yes, we are now officially diapering for one.  And we couldn't be happier.




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8 comments:

  1. Yay David!! I am so so happy to hear this!

    Love you guys,
    Lisa (aka Aunt Lisa)

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  2. Yipee!
    A milestone in any case - For David - a super duper Snoopy Dance!
    Blessings
    Karen

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  3. Praise God for His grace & mercy & the power of His healing! That first picture is so precious - what an angelic face! So glad to hear he's reached this "milestone" and will continue praying that he remains healthy and free of complications. We love all your beautiful boys!
    Love & prayers, Dad & Lin

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  4. Way to go David! What a relief for all of you! thank God for his wonderful blessings!

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  5. Wow! I never knew how bad it actually was Mary...praise God!! Praying for you all :)

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  6. I have never heard of this disease before! Wow. So incredible how you've been able to keep it under control and now he is POTTY TRAINED. Awesome!

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  7. What a fantastic praise! You have so much to be thankful for.

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  8. Woo Hoo David! Joining the big boys! And hurrray for only one in diapers!
    Pat Haseltine

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