What the Houston Doc really said

I'm sorry to say in my last post I gave you the bubble gum version of the neurology appointment in Houston.  I was still raw and since this can be viewed by the whole world, and not just my safe little e-mail list I once had in the beginning, I needed some time.  Things are getting back to normal now and I'm starting to get a scab over the new wound we received there.  I'm ready to share.

The appointment itself was just as I said in my last post.  Dr. Fernandez took the MRI scans, the medical records, and the history he obtained during the visit and said he would study everything well in a couple of days when he had time.  The scans were read by the neuro-radiologist he hand picks (he said he'd come back as many times as it takes to get the specific one he likes to use).  When he called a couple of days later he told me they were able to re-read the scans, independent from the reading previously done by the radiologist's here in Fort Worth, and had come up with at least a little something.  They agreed with the Cook's folks, his brain is shrinking, in both grey and white matter.  The condition is classified as severe and is progressive.  Of course I didn't think to ask where "severe" landed on the scale of bad-ness.  I'm assuming there is maybe another level of bad above severe??  Profound maybe?  Surely.

They think the condition is metabolic in nature but won't know for sure until his gene tests come back in 3-5 months.  He made it clear that metabolic diseases were almost unknown and only a very few could be helped by supplements or diet and medicine.  He said kids with metabolic disease with this severity can live a long time.  He has one patient who's 20.  Sorry doc, but 20 isn't very long, and the fact that ONE patient is 20 doesn't make me feel real great.

He also said with how he looks now (both physical exam and MRI scans) he would not expect Dominic to develop much, if any, in language or cognition.  This I expected, from the beginning really, as soon as we found out his problems were genetic.  But as almost every mom with a special kids has told me, the doctors are usually wrong when it comes to prognosis for development.

I guess the reason this hit me so hard is this is the first doctor, ever, to give any sort of prognosis or classify the finding like he did.  I appreciate the honesty, I really do, but man it sucks.  It's that whole "brain shrinking", "grey AND white matter", "severe" thing that gets me.  I knew it was happening, I can read the MRI reports just like anyone else, but I'm not a neurologist, I can't say what it all means in the grand scheme of things.

This past week we have cancelled all our therapies and took time just to be.  We've struggled and come out on the other side, though not the same.  Just tonight during my rosary I felt the mystery of the annunciation profoundly.  Mary said yes, without caveats.  She loved her son and watched him suffer and eventually die.  BUT, she did not question, she just said yes, according to His will.  Over and over.  It is my deep yearning that I can imitate her in this way by just saying "yes" regardless of what comes our way. 

We don't know how long we will have him, and now we know it may be less time than we expected, but we're just loving him in a way that makes him believe he is the most important person in this world.  Because to us, he is.

 Dominic sporting his new orthotics

The only problem is whe he has these and the camo hearing aides on we keep loosing him ;)