Michael Warechowski IV

Updates on our sweet Michael

on April 14, 2014

December of 2012 was the last time we took Michael up to Pittsburgh to see Dr. Maria Escolar and her amazing team. They are our (and by “our” I mean all MLD families) go-to for questions, answers, testing and comfort in the MLD world. 

We just found out that the annual MLD family conference, which we attended for the first time last year, will be held this July 18th and 19th in Pittsburgh, PA! This is super convenient because we have been wanting to take Michael back up to see Dr. E for sometime now but traveling with him is difficult and expensive. We’ll be able to “kill two birds with one stone” this summer! 

Up to this point, we have focused on comfort over intervention. We want Michael to be happy; to be comfortable; to be where HE WOULD WANT TO BE. But now we are realizING that in order for him to be comfortable, we must intervene a little. So, the areas we want to focus on at this visit with Dr. E are:

  • How can we continue to manage Michael’s pain? Is he on the right medications at the right dosages? 
  • Without putting him through a lot of pain, how can we keep his tight (cute) little legs loose? Many kids end up needing their Achilles “snipped” because their calves and feet get so tight. 
  • We know he has bad scoliosis – that is part of the disease. But how bad is it? Should we be concerned? 
  • How far has he progressed at this point? We might need an MRI to show us where he is because sometimes, an MRI can show us how much time we have left. 
  • How is his hearing and sight? We know his sight is pretty much gone but it would be nice to know from a medical standpoint what we have to work with, you know?

We are excited to see all of the other beautiful families at the conference. I must tell you that I never knew true beauty until Michael got sick and we got to meet other MLD kids and their families. I don’t know what to say -These kids are just beautiful. Another MLD mom said it perfectly – These beautiful kids are trapped. They are with us and they live through us. They hear and feel us but their sweet little bodies cannot do what they want to do. 

The other night as I laid in Michael’s bed I thought to myself – He (Michael) is wiser than me. I truly believe this. He probably brings me more comfort than I bring to him. He makes me feel safe. He makes me feel special. How can such a small being have so much power?

These kids are SPECIAL. Believe me.

In the famous words of Lina Sereno (a wonder woman MLD mom), “Hug your babies.”

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