Mar 18, 2011

Manny Withdrawls?

For the record, no I am not Pro or Against the Celtics.  I am, however, grateful for such a cute outfit and a sleeping baby!

Got to wondering how many of you might be having Manny withdrawls ... so I thought I'd better catch up on the latest. 

Nothing much has been happening.  That's the great, awesome, amazing news.  He's stable.  That's HUGE. 

Since coming home from the hospital on March 1, he's been mostly fine.  He is starting to show some early signs of something "off" with the jtube.  But nothing emergent yet.  And nothing that can be done at this point either. 

Like one thing is  ... he is starting to cry a lot more again at night.  He says, "owie" and "ouch" but can't point to or indicate where.  By process of elimination, we figure it has to be tummy related.  In addition, he's started with that "wet" cough again.  That usually proceeds milk being in the wrong place.  BUT ... no actual milk in the wrong place that we have found yet. 

Also, if the jtube does migrate out of place, we have our game plan so this won't be a nightmare like last time! 

I know I mentioned about him seeing the Pediatric Metabolic Geneticist and how she wanted the muscle biopsy done.  So on Monday we saw our regular Neurologist.  He was again blown away by Manny.  He is Hispanic and was talking to him in only Spanish.  All cutsie words and calling him "Manuelito" and other endearing terms.  Soooo sweet.  He says he'll talk to the other Neurologist (who specializes in Muscular Dystrophy) and they will determine about the muscle biopsy.  (Still haven't heard from them.) 

Today the kids had the day off school.  It was 85 so we decided to hit the beach.  Dan was working so it was the 6 kids and me off to play in the sand and sun and water.  Here are some pictures for your enjoyment of Manny's first time playing in the water and sand.  He LOVED the water.  The sand, not so much.  He'll get used to it ... we live in Florida and he'll have to. 


  1. I love seeing Manny and hearing about your life. If no news is good news then I hope to not hear a thing from you. :) It was 85 here too today. I could get use to this! So glad Manny is doing well. Be blessed Friend.


  2. I was definitely missing your updates. Good to hear he has had some good days. Hopefully it continues. So fun seeing him on the beach. Here we still have tons of snow. Hugs