Finally ready to share the news ... prepare yourself.

WARNING:  This is heavy duty stuff.

MY FEELING:  We're hopeful God will intervene with a miracle. 

HISTORY:  When we got Manny, he was EXTREMELY hypotonic.  Several tests had come back "negative" for genetic testing.  Since he's been home with us in 7 weeks, we have seen amazing strides forward in his skills.  He couldn't move his head 1/4 inch in any direction.  And he can now hold his head up for about 2 minutes at a time. He has some new arm movement and some leg movement - all new.  In addition, he is sounding louder ... in talking, coughing, crying. 

We knew that there was a major condition of some type and due to his early months, it was compounded by not getting the proper services and therapies. 

But we had a lot of hope that he was progressing in a lot of areas. 

At the same time, we know he is losing some skills.  For example, his birthmother bottle fed him until 8 months when it became very difficult and he was aspirating all the time.  This is why he had to be put on a gtube.  He's also losing the skill to swallow even his saliva.  Since we've been in the hospital, I'm noticing that his tongue isn't working with the rest of his mouth.  Like he wants to suck a pacifier but his tongue is thrusting it out and frustrating himself. 

THE DIAGNOSIS:  The brain MRI showed a degenerative white matter brain disease, Leukodystrophy. White matter controls some involuntary reflexes like swallowing and breathing.  (So pretty important.)   The white matter is in the front, middle and back of the brain.  And this disease affects one, then the next.  His is already completely in all three areas and beyond.  So he is considered "end stage". 

Children with this disease typically die of respiratory failure.  Their muscles in the lungs just give out and unless you put them on a ventilator, they often die very young.  (The blood tests have been sent out to find out which specific subtype this is.)

THE PROGNOSIS:  Considering how far his is already advanced and how quickly, yesterday, the neurologist said his best guess is that he won't make it 6 months.  Today he told me he might not make it to his first birthday (June 26).  Today we did the EEG which should help show if we're talking closer to the 1 month or 6 month. 

THE REALITY:  We know God is "Mighty to Save" (a song that's brought great comfort).  And we know God is Completely capable of healing him in an instant!!  We also know that sometimes He says "No".  And we have to be prepared for either reality.  So they are going to send hospice to talk to us about their services.  Social services is going to bring in a DNR form for us to consider. 

THE REAL STORY:  I'm grieving hard.  I knew he wasn't likely to live long.  But I feel cheated in the months and years we thought we were going to have with him.  So I have to figure out a way to make every day count.  That he feels loved to the core of his being.