One Year Ago Today

Earliest picture we have of him ... one year ago today

One year ago today, a baby was taken to the Firestation.  His birthmother had heard about the "Safe Haven" program where you can take a baby to a safe spot and leave them there with no troubles.  What she didn't know was, this only applies to the first 3 days in Florida and this baby was 8 months old. 

"R" was young and had no real support system here in the States.  He was getting sick often and this time, he was ill with pneumonia.  I cannot begin to imagine what was going through her heart and mind.  What things must have driven her to this point. 

This baby was well loved.  That was clear.  He was alert and engaged, clearly attached.  He also had signs that he was not held much, treated almost like he would be "broken" if held. 

So R and the baby rode in an ambulance to Arnold Palmer hospital in Orlando.  They spent the first night together.  The next day, the attorney and social worker and translator did all the paperwork to make sure the baby was legally freed for adoption. 

Can you imagine what R was feeling?  I cannot. 

They got all the info they could from this very, very young lady.  And then off she went. 

And this baby was in the hospital alone.  For the next almost month, this "abandoned" baby endured horrible tests, surgeries and illnesses ... all without a mother. 

We have very little of what his first 8 months were like after his birth.  Not one picture.  No signs of doctor appointments.  Nothing.  It's a complete void.

Over the next month I will tell various stories to fill everyone in on Manny's early days.  Last year as it was happening, I couldn't share because of privacy issues.  But I want to tell his story  ... from the beginning.  It's a beautiful story that is still being written and I'm thankful for every one of you along for the ride. 

Now ... on to today's Genetics appointment.  Dr. Sanchez is actually a Metabolic Geneticist.  Long story short, we were not there long.  She already had the long history, the results of all the tests, etc.  and already had a plan of action.  She just needed me to fill in a few details. 

The real news?  She doesn't think he has Leukodystrophy at all.  She (and I) actually think it might be a Congenital Myopathy.  I've identified 2 that sound like him and his symptoms.  She wants a muscle biopsy done.  (I've been asking for that for months now... seems everything hangs on that.)  She has some ideas about what it might be and wants VERY specific tests done on the muscle. 

She was in a bit of shock that everyone had gotten stuck on the Leukodystrophy diagnosis and not considered other possibilities ... even in light of his clinical presentation being very different than the prognosis. 

Tomorrow I will be calling the Neuro to see when that can get scheduled. 

Oh, and he's lost almost 3 pounds in the past 2 months.  From 26 to 23.  That's significant.  But not surprising due to his tummy problems.  And so far, no troubles with his jtube feeds.  But he is still having c-diff symptoms.  (And sadly, so do I.  And yes, I got my driver's license today ... pretty uneventful thankfully.)