SIX months post-op AND ONE YEAR OLD!!!!!!!!!!!!!!!!!!!!

WOW! What a year…it has been a few days of reflection for me and ALOT of happy tears. One year ago we were waiting for diagnosis and I was being discharged from the hospital and begging the midwives to come up w/ some way to let me stay admitted so I could remain in the same building with my baby. It was such a scary, sad, emotional time. Fast forward to today. We have a HAPPY, healthy, beautiful baby who turned ONE on 12/5. He is eating solids, pooping and hitting all his milestones!!!

We had our 6 month post op visit last month. He is doing great and everything looked and felt great. We don’t have to see our local surgeon for another 6 months!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! YIPPEE for that! We still dilate and will continue with weaning off it for another couple months.

Hirschsprungs is a disease that puts you in a constant state of should we/can we/ do we/ are we……….we are battling the dreaded HD diaper rash- which started in mid October. We have tried ALL OTC diaper creams and use a bunch of stuff that only the ‘HD families’ know about ;)

There are lots of ways to try and treat, prevent and deal w/ the rash but we have not found one yet that works perfectly. I am wondering if the rash came due to the intro of yogurt; so I took all dairy (yogurt/cheese) out of his diet and will not be intro’ing any cow’s milk into his diet. Our ped thinks the rash is yeast so now we treat it as that and wait. So me being the control freak and overthinker that I am has to CALM down and still take one day at a time. I am NOT complaining. I am so happy with how far my little man has come. I could not be any prouder of him. He is so brave, so cooperative and so HEALTHY!!!!!!!!!!!!!!!!!!!!! We are blessed!

thanks for reading~~~Brenda

2 Responses

  1. Julie July 12, 2014 at 1:26 am | | Reply

    Did you find any cream that worked really good for the diaper rash?

    1. Brenda Weiss July 27, 2014 at 1:09 pm | | Reply

      We made our own, here is recipe:
      1-1-1
      Desitin (45% zinc) + Karaya Powder + sween cream

      all can be purchased on amazon

      Some people love Ilex, it didnt work well for us.

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