Wednesday, February 16, 2011

Getting inside his head

If this were some exciting blog about a fascinating person who gave stellar advice about your personal life, this title would reference some great secret about how to decode what your guy is thinking.

But it's a crazy blog about an insane woman and her billion kids, so this references some killer pictures I'm about to show you.

435 pictures of the inside of my baby's head.  Really.  They weren't kidding about being thorough!  Some great views.  Some amazing shots.
No report on the disc.  GAH!  Seriously, not a single paragraph, only pictures.
Dang.
Oh well.  I am super curious to see what the evaluation says.  Wondering if the neuro-radiologist who did the report will still say holoprosencephaly, even though that has been wiped off his list.  I'm working on getting that report from Stanford into the rest of his records.  Wondering if this dr will also feel like the rhombencephalosynapsis is there.  (sending these scans off to an evaluation study for that)  I'm not expecting the report from these scans to have anything new and life altering, just wondering what the current opinion is.  It's like a super exciting guessing game.  Is it bad that I find it a little entertaining to see what everyone thinks?  I'm going with no, it's not bad, because it indicates that things are going so very well with Samuel that we aren't desperately looking for a magic answer....just a more up to date how to proceed kind of answer.

On to some pictures!



All that white in the middle-a whole LOT of fluid.  

A classic favorite, the bulgy eyes picture:

And one more-look closely at his mouth.... (you should be able to click on the picture to enlarge it)

That is his binky in there!  Makes me laugh to see that.

I did get a chance to talk to the neurosurgeon's nurse again today.  Yesterday she called to let me know that our Dr was leading department meetings and hadn't had a chance to look at things yet, but she'd let us know asap.  She called this morning and said "I'm confused.  You told me there was a big jump in head size, but I don't see that at all."  Huh?  I gave her the info from the charts I had but once I started thinking about it I was a little baffled myself.  We knew his head was huge when he was born, but on our Pediatrician's charts, it was listed at 56th% at two weeks old.  Thus our mild panic-56 to 97 was a huge leap.  She said that from the appointments with neurosurgery, they had him on the charts at 90th% when he was little, and his current measurements put him at 97th, so an increase, but not a huge jump.  We verified the numbers just to make sure everything had been entered correctly, and the measurements were consistent, it was the charting and percentiles that were different.  Hmmmm....  Thankfully they could access all of his charts from our Pediatrician in their computer system so they could see the different charts being used.
Point being, after that back and forth, Dr K finally saw the charts, the scan, and the report and though he isn't terribly worried he would like to see Sam a little sooner than our appointment.  So we will be going in on Feb 28th instead of Mar 7th.

I am glad that the situation isn't nearly as immediate as we all thought.  Seeing that the jump in head size isn't nearly as scary on the neuro charts is a little comforting.  Also the fact that Sam's body size in relation to his head size is a bigger spread now (8th% weight/31% height @6mo) compared to what it used to be (27th% weight/60% height@4mo) may be exaggerating the appearance of the size of his head.  The bulging fontanelles and veins are concerning, and part of the reason we are getting in sooner, but with no "neurological episodes" going on, we're ok.  Phew!

Feeling very blessed (again)
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5 comments:

XLMIC said...

Incredible pictures! I don't think it is bad that you find it 'entertaining'... your attentiveness to all of it and fascination with it helps keep you on top of changes and informations. I think it is a good thing :)

I cannot wait to hear what it all means. Keeping you all in my thoughts and close to my heart!

Laurie said...

Those pictures are really pretty cool, thanks for sharing. I'm glad that the news you've received seems somewhat reassuring. I hope things continue to go well for you and your adorable little Sam.

Kelsey said...

oh those little pix! He is such a gooer. I love binky babies :)

~LL~ said...

Psalm 46

God is our refuge and strength, an ever-present help in trouble.

Therefore we will not fear, though the earth give way
and the mountains fall into the heart of the sea,
though its waters roar and foam and the mountains quake with their surging.

There is a river whose streams make glad the city of God, the holy place where the Most High dwells.

God is within her, she will not fall; God will help her at break of day.
Nations are in uproar, kingdoms fall; he lifts his voice, the earth melts.

The LORD Almighty is with us; the God of Jacob is our fortress.

Come and see what the LORD has done, the desolations he has brought on the earth.

He makes wars cease to the ends of the earth.

He breaks the bow and shatters the spear; he burns the shields with fire.

He says, “Be still, and know that I am God; I will be exalted among the nations, I will be exalted in the earth.”

The LORD Almighty is with us; the God of Jacob is our fortress.

Lisa said...

Those are amazing.
Praying for wonderful news.