Saturday, July 7, 2012

Lets face it, this just sucks

These past couple of weeks have been so good.  So good.  We are finding our groove holding and carrying little Dom around, and it is just perfect.  I have strained all sorts of back muscles but I don't even care.  I just carry him everywhere.  I've finally been able to put my sling to use with this one.  But as it always is with our little saint, the tides turn in an instant.

While we were in the hospital I went down and got a copy of his latest brain MRI.  And as always, I figured that I was way more concerned about what it said that the doctors were going to be.  I just take every little detail and mull it over, make up imaginary prognoses, and am just sure it means something way worse than it actually ends up being.  This time though I was right.  Last Tuesday we went to the neurologist for a follow up.  Have I told you how much I love our Neurologist?  In his own words, he "lacks all social skills," but he is the most compassionate, caring, and thorough doctor we have.  He has a little baby with Down Syndrome, he is "one of us" and can relate.  He came in looking worried and told us that he's been studying Dominic's scans.  His brain is shrinking and he doesn't know why.  He apologized and said how frustrated he was.  He said he will continue to look for a cause and try his best to fix it, or at least slow it.  And I believe him.

We have been worried about his ventricles (the fluid filled spaces within your brain) because they seem to be getting bigger, which normally is a sign of hydrocephalus, or increased water (CSF) on the brain.  Dominic though hasn't been having any of the usual symptoms of hydrocephalus.  Our neurologist said he feels certain now, looking at the MRI scans over time, that the ventricles are enlarging because the brain matter is atrophying.  Also, his brain stem is shrinking, particularly one tract that carries the signals for motor movement from the brain to the body.

How can this be!?  He is doing better with his motor control, with holding his head up and trying to balance some in sitting.  On his tummy he can bring his head to neutral and is even bearing some weight on his legs when he is stood up.  He communicates with his eyes and his smiles.  He is getting better!  How can he progress when his brain is shrinking?  I would like to say all this doesn't matter, but I'd be lying.  He is so very much alive, lying next to me kicking and snorting and smiling, but still I have this deep grief that continues to grow within me.  This anxiety that I continually give to God but it always comes back.  This deep pain that I just can't shake.  Perhaps it is nothing more than the usual worry a mother feels for her children.  Still, there's nothing to say but the obvious:  this sucks.

While we continue to try to find a disease process here (with a lumbar puncture done during his surgeries in August), we are going to start looking for a second opinion at another larger hospital.  Probably Texas Children's in Houston first, then maybe another even higher ranked one in a far off state.  We'll just have to see how it goes.  So, sorry to be Debbie Downer, but life with a special needs kid is just like that: up, down, up, down, and I'm trying to honor my promise of bringing you along on the ride.  After all, it's not everyday you get to see the inner working of a little saint's life.

But at the end of the day, we are grateful for him.  He is happy and loves life, and is always the light at the party.  The kids adore their baby Bubba and we are all so blessed to have him, however long that may be. 

Dominic getting his first steak!  Gives a whole
new meaning to "tube steak"  :)

MiMi got to do the honors.  He wasn't too impressed though.

"Mom!"  Dom riding his first (fake) horse at the Cowgirl Hall of Fame

Dominic and his baby friend, Bridget, having a deep conversation

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