Jan 7, 2011

Repeat MRI results and other news

Manny had an MRI back in May 2010 and it was "Scary" as one doc put it.  From that MRI, he was diagnosed with "End Stage Leukodystrophy, unspecified type".  The neurologist set up for him to receive hospice care and told us what the end of his life would look like.  He told us to prepare that we wouldn't have him very long. 

GAP stands for "God Answers Prayers"
Most of this story is written in the blog (starting from that point and going forward). 

But apparently, God works in mysterious ways.  He began to heal Manny.  We have no clue if his actual BRAIN was improving.  But we know that Manny was improving.  He started to move more than just his eyes.  He started moving his head, fingers, hands, toes, wrists, arms, legs, etc.  Little by little, his body was "waking up", from the outside in. 

He learned to hold his head up.  He sat up unassisted.  He started talking.  2-3 word sentences even!  Cognitively, he showed he is "all there".  He is truly present behind those beautiful eyes. 

Every doctor was shocked.  Speechless.  I would tell them we believe in a big God who is still doing miracles today.  They often agreed. 

It was decided (by that original neurologist) that we should do a repeat MRI.  So we did.  As I type this, I don't have the answers yet.   But I will continue this post tomorrow and tell the rest of the story. 


Today I picked up the MRI and Preliminary Report.  The final one is supposed to include a comparison from the first to the second and I had HOPED this would include it too.  But quick story ... the MRI findings are still consistent with a Leukodystrophy, end stage.  So now that means what?  They're going to still have to do some more digging to find out the type, etc.  But it also means that God is going to get glory that even though his MRI shows he should be regressing, he is progressing. 

So while it's not the news we had hoped for, we are in faith this story is far from over. 


Today was a big day for other reasons as well. 

1)  He got new foot braces.  I'll do a blog soon to show the 3 types of casts/braces he has or had.  He is not a fan and they are leaving bad marks so we have to get them adjusted.  But this is a "step" in the right direction for being able to walk some day.

2)  He got his new wheelchair!  His first ever.  (And I'm hoping he can walk well before the need for another one.  He LOVES it.  Got the look of part stroller, part wheelchair.  We'll have to work on getting it in and out of the van ... (it's heavy) and has no cool accessories yet (Like I'll miss my cup holder and key holder until I find a suitable replacement).  But it's going to be wonderful for his head, neck, trunk support.  And he has a cool tray with it so he can play, write, etc.  A final benefit is that people will stop arguing with me about him needing his stroller/wheelchair.  (Like at Busch Gardens, you have to leave your stroller outside for shows but wheelchairs are allowed in.  Even when he's hooked up to oxygen, a feeding pump, etc, they argue with me.  That will be over.) 

3)  We need prayer for one more thing.  It's related to last week's surgery and he has a complication.  He's having a LOT of pain urinating and therefore he is refusing to void which causes more problems and more pain.  He basically stopped peeing on Wednesday.  I've talked to the Urologist office 3 times and I even went in today.  They saw how full his bladder was on Ultrasound so they cath'ed him.  (Not pleasant either.)  He still has a few more days of healing on the problem.  So in the meantime, the only time he stops screaming is when he is asleep.  So needless to say, we're all exhausted.  We're trying to keep him comfy with pain meds but it's not helping. 

Happy weekend everyone!


  1. I will be praying the weekend brings completely healing to Manny's surgical site. you will all be relieved when he can be back to his normal self1 The MRI results are puzzling. What did the doctor think about it?

  2. One doc told me that an MRI is just a picture in time. That it doesn't tell everything. I kept hearing that Jack's MRI was horrible and it didn't match up with what he could do.
    Yay for the wheelchair. I was so happy when we got Jack's but I really miss my cup holder too!!!

  3. Beth, one of my boys had some problems and refused to pee because of pain from an infection. So after a middle of the night trip to the er and getting him cathed I discovered if I put him in a warm tub and splashed warm water there it made him go even though he didn't want to.....not sure if you can even immerse him at this point or try the warm water but thought it was worth a mention!

  4. Beth: they make a small lift that can attch to his chair and lift it ( without Manny) into the back of the van. I will send you a picture of the one we had when Josh was little...