Michael Warechowski IV

Updates on our sweet Michael

Just an update

on January 10, 2013

So we started Monday with real food in Mikey’s tummy. It was not a success at first. I made this super healthy concoction with a bunch of foods Michael used to like and tolerate. Well I guess I didn’t realize that in the process of him regressing, his systems have also regressed almost like going back to being an infant. He can’t handle certain foods that he used to. So after consulting my “team of experts” (the other parents on the MLD discussion board) I made a new batch of food that he tolerated very well. That being said, we have solid poop everyone! It was such a relief to see. Some of you reading this will understand the excitement I felt but others may think I’m weird for being excited about poop. Oh well. Michael is now on bolus feeds instead of getting small amounts all day long. We are working our way up on the speed of feeding (we don’t want to stretch his tummy too fast) but so far, so good.

Some disappointing news to report – I think Michael’s vertigo is back. It had gone away after increasing his Neurontin but these episodes where he looks lost and starts screaming crying for an hour at a time, have returned. I’ll be contacting Beth and Dr. E today.

This weekend Mike and I will be taking a very emotional trip up to Charlotte, NC. Another MLD family lost their sweet son about 4 weeks ago. He was about a year older than Michael, extremely beautiful and undergoing stem cell transplant at Duke. Unfortunately he did not make it through the transplant. I followed this sweet boy’s story from beginning to end – read every word his parents posted. I grew close to that family although I never met them. Apparently as I was becoming attached to them, they were also becoming attached to us and Michael. His parents had been following our story all along as well. This boy’s mom contacted me and wants to donate some of his equipment to Michael – wonderful, helpful things like a stander, stroller and a few other things. We are honored beyond words to use his stuff – to be that close to him although we never got to meet him.

Everyday is still so emotional for me. I really have to not think about the past or future or I will lose it. I watched a video that a friend prepared about Michael yesterday and I cried so hard for an hour. I could barely make it through the day without tears. Amazingly, when I went over to give Michael a kiss, the crying stopped and I felt calm. He’s the only one that can do that to me. Makes me wonder how I’ll cope when he’s gone… I know I can’t think about that now. Enjoy today. Focus on keeping Michael comfy and happy.

I think we’ll go for a walk today – it’s unseasonably warm.


2 responses to “Just an update

  1. Sharyn holmes says:

    Hope you got your walk with Mikey in before the drizzle. Sorry for the loss of the family in NC but thankful they reached out to offer their help for y’all.

  2. Shon Woods says:

    I’m praying for you. And keeping you and your family in my prayers. Always….

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