Tag Archives: parenting

This crazy little thing called Hirschsprung’s Disease

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This crazy little thing called Hirschsprung’s Disease

 

So in case, you haven’t figured out yet – my world revolves around my two little monkeys – EJ & Moo. My boys aren’t just special because they are mine, they are special because they both have a rare genetic disease. (Technically this disease is becoming less rare and that makes me terribly sad.) My boys both have Hirschsprung’s disease. My non-medical way of telling the story of this disease looks like this – while my babies were in the womb their large intestines formed but didn’t work. So when they came out of me they weren’t able to pass stools. The solution to the problem was for an amazing surgeon to take out their large intestine in its entirety. Now, this isn’t a bad solution for my boys – we got VERY lucky in the severity of their diseases – though side effects that they ended up with sometimes make me wanna cry… But I digress, the surgeries went very smoothly and the boys have recovered beautifully.

EJ Slide

As most of the HD kids who have had their reconnection surgery, both boys ended up with some very acidic stools which caused breakdown of the skin on their bottoms [read: extreme diaper rash]. Thanks to our surgeon’s wound care specialist we got an amazing [reads – expensive beyond my wildest dreams!] (thank goddess for great insurance) diaper paste that helps give their skin time to heal. They are both on special diets – (one which we all wish we could be on) high fat and high salt.

All that said, we got incredibly lucky. I have read of children and adults dying of HD. I have read of children having so many many more problems than my boys ended up with. What they ended up with was an easy version of the disease and a cow’s milk allergy. I can deal with this. Or at least today I can.

Moo carseat

If you are an HD parent, friend, or patient reading this, well, I send you my love. I send you the ability to breathe in the calm during those moments that seem to go on forever without an end in sight. You aren’t the only one out there and there is more than one way to handle the problems that HD throws at you I promise!!

 

Love & Peace

Ally

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A love letter to the village

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They say it takes a village to raise a child – so…

Dear Village,

Thank you.  No that doesn’t even begin to describe what I am feeling towards you. I am humbled, thankful, grateful, indebted, appreciative, relieved and overall I am utterly and totally honored that each one you would take such precious time out of your busy lives to include my two monkeys in them.

mikey lap No matter how small or great; you have helped to ensure that my boys know they are loved & wanted. They will know they are special because all of you amazing people have chosen to give part of your time – your life – your knowledge to my little men. These two boys are my life and I don’t think I could get be raising them as well as I am without each one of you.

I am grateful to have you in my/their/our lives. I appreciate you and everything you have done and do for my boys. You have helped give them this rich & wonderful life they have. They are happy and healthy (for the most part). And that has a lot to with you – the amazing people that have come to love & care for my babies.

ej at deerfieldIn conclusion, my dear Village, I thank you & your love & effort. You have helped & are helping me raise some truly amazing boys!

With love & respect,

Their Mommy