Michael Warechowski IV

Updates on our sweet Michael

What we learned from our time in Pittsburgh

on June 7, 2012

It’s really nice to know we have a team of wonderful people who really know about MLD. Dr. Escolar, her PA, Beth, her coordinator, Sarah and the rest of the team were all so helpful. They were all so welcoming and compassionate. The Neurontin they recommended is helping – Michael has been sleeping through the night again!

Although Michael was put through a lot of tests, he did so good. Mike and I were so proud of him. I spoke with Dr. Escolar yesterday and she had all the results from Michael’s tests. Michael has all the typical signs of an MLD child. However, she said that where Michael is now, most kids are at 18 months. So, it appears that Michael’s disease started a little late which means he will progress a little more slowly and live a little longer. This is obviously great news. She also said that the demyelination in his brain (which is what causes the disease and all its symptoms) is mild to moderate. MLD children’s brains atrophy over time. Michael’s has not begun to atrophy yet so that is also very good. He has begun to lose some of the conduction in his hearing and vision. What this means is that although he can see and hear just fine, it takes his brain a little longer to process the stimulation. Personally, I have not noticed this. He still seems so sharp to me!
Dr. Escolar does expect to see some more changes in the next 3 months – enough that they will want to see him again. His speech will probably start to decline a bit, becoming more slurred but she said he should keep his cognitive function for a while. 
The plan: start physical and speech therapy. We need to get him on his feet as much as possible so his hips develop correctly. He’ll need to wear his braces to keep his legs straight and once he can’t stand by himself anymore, we’ll have to get a stander for him. 
And the most important part of our plan: have fun and LOVE on this precious boy! We are leaving for Disney World on Sunday!!!! And what’s even more exciting is that Southwest Vacations is paying for both grandmothers to go with us! We are so excited and we’ll be sure to take lots of pictures!

2 responses to “What we learned from our time in Pittsburgh

  1. Becky says:

    Have a wonderful trip and enjoy all the Disney fun 🙂

  2. Teresa says:

    My thoughts and prayers are with your family. You are so strong and such an inspiration…thank you for sharing your story. Enjoy Disney with your precious little boy!

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