Days 1 & 2 In Review

Ready to go back!

Ready to go back!

Been quiet on the blogging front because for the most part a lot of this is old hat: fly, land, hotel, Target run for food, Day 1 meeting with Drs. Whitley and Utz, Day 2 meeting with neurologist, Day 3 MRI and spinal tap, etc.  We try to keep to somewhat of a routine because it’s what we know, and well, I’m superstitious.

I’m writing this while Armand is back in the OR getting his lumbar puncture from Dr. Whitley, his MRI, and eye exam under sedation.

Armand had his in-clinic eye exam on Monday with Dr. Bothan.  After taking a quick look at the back of his eyes, he said that structurally they are about as sound as they could be.  Previously there had been signs of pressure on his optic nerve, which may have been caused by ganglioside substrate, and may have been a cause of his eyes crossing for much of 2011.  But that pressure is gone, and his eyes are now perfectly aligned once again.  There is also no evidence of cherry-red spots, either.  We may know a little more from Dr. Bothan today if anything is different from that initial peek.

(edit: A member of Dr. Bothan’s staff just came out to tell us that yes, his eyes look perfectly stable, no red spots, no optic nerve problems, etc.)

(edit 2: Dr. Whitley just came back to let us know that all went well with the spinal tap.  His CSF pressure is around 15.4, a drop from his last measurement of 18.2 in October.  We’ll know more tomorrow hopefully).

SAMSUNGAfter that we headed over for a meeting with Drs. Whitley and Utz as a catch-up and an initial  visual examination to see how he is doing — they both seemed impressed with how much more alert and active he is now than he was in October.  Dr. Whitley remarked that he could tell just by the looks on our faces how much better El Jefe is doing.  Armand even gave Dr. Whitley a huge giggle while we were going over consent forms.  For the moment we are not making any adjustments to the treatment, although we will delay our next visit until May (4 months instead of 3).

On Tuesday we met with Dr. Karachunksi for another visual examination.  He remarked on how strong Armand’s legs are, and that he doesn’t show much spasticity.  He also remarked on how alert he was.  We are going to have a second meeting with Dr. Karachunksi on Friday to discuss his MRI results in detail as well as to compare them with his previous MRI.

See the splint on his finger?

See the splint on his finger?

A new joy in our lives is that Armand has started to bite the ever-loving C**P out of his fingers.  He bites down, and then when he realizes it hurts instead of opening his mouth to cry out he bites down harder to clench his teeth and whines.  And then between pulling his finger out of his mouth and prying open his jaw, he loses a bit of skin.  So, naturally as we’re leaving the hospital on Tuesday, he decided that was a good time to partake in an index finger sandwich.  A little bit of blood and a lot of crying (by both he and Lindy who had yet to see this happen) and I was on my way to Target and Wal-greens to look for splints, bandages, ointments, and anything I could find to help him heal and keep him from further nibbles.

I'm tired, Daddy!

I’m tired, Daddy!

Outside of that, really we’ve had an uneventful trip.  We did have some noisy upstairs neighbors that caused us to change rooms.  Oddly, we were in the same room where we previously had problems with noisy upstairs neighbors, however this time instead of a bunch of drunk idiots, we were contending with another family on a long-term medical stay.

Oh, and Armand is trying to crawl again.  So there’s that.

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