Friday, March 24, 2006

Well, we're back and in one piece. Whew!

After 48 hours on EEG, today's head CT and skull films...

The good news: No seizure activity. So I won't be giving Q daily steroid injections. And we won't have to even consider the alternative drug which has some problems with field of vision effect (narrowing and blindness). There is still a remote chance that Q is having infantile spasms and just hasn't developed the full-blown hypsarrhythmia seen on EEG in IS (if he were diagnosed at this age it could be considered early to have made such a diagnosis), but no indication of it for now. Woohoo! Also, the baby did not need sedation for the CT this afternoon--he fell sound asleep as we rolled into the scanner room. Thank God for all of that.

The bad news: the EEG is not normal. I don't know exactly what that means in technical terms, but I have a call in for neurodevelopmental therapy to begin ASAP at a local facility, per Rx. I should hear back from the scheduling folks on Tuesday of next week about how soon we can get in.

The neurologist stated that what can be seen on the EEG is that Q has an "immature" brain, which is causing what looks like shivers, as well as (probably) the other rhythmic tensing, relaxing. The chances for "mental retardation" are astronomically high. It is difficult to know at this point what that means in terms of real life. Q's genes provide for near genius on his daddy's side, and his sibs are brilliant, of course. So far, he's a little ahead of "normal" development, on many fronts. Today he was darned conversational--smiling, cooing and gurgling into my face, telling some spectacular story, if only I knew his language. So who knows?

Sigh.

I was reading in Ecclesiastes last night and again in the wee hours after feeding the babe. I once heard the book summed up as (paraphrasing) "Life is bad." I would have to agree. It was interesting though, to note that the emotion then and now, surrounding statements of just how bad life is, how there's wickedness even where there is righteousness, that emotion is pretty much the same. Exasperation. I'm tired of things looking downright awful...

So. (Deep breath--sucking it up.) The CT and skull xrays will be read this evening sometime. We go back to see the neuro guy in a month, then again in three months. The MRI will be scheduled for about 3 mos of age--sometime in the next few weeks. I'll be back to muse and fret, and write more of the story as it is revealed, and as parts float to the surface of my conciousness. (I'm occasionally having trouble tracking the details.) I've gotta try and catch a nap before the rest of the kidlets arrive back here.

Thanks for the prayers and well wishes while Q was inpatient. I'm so happy to be done with leads and glue and staying still for the camera, at least for now.

Have a blessed, peaceful weekend and hug your family extra tight for me.

6 comments:

Ria said...

Carrie,
You and your children remain in my prayers. Bless you all.

Ria

Andie said...

Carrie, I just don't know what to say. Your strength and stamina are amazing. You all are in my prayers daily.

Student of History said...

I have to say that Andie has it right - you are amazing. I know it is because you HAVE to be and God is sustaining you.

Deep breath, and one moment of life at a time. Much love and prayers for you, friend.

Kate

Old Dominion Heather said...

Still praying here for you guys. I'm glad little Q did pretty well during his test.

Heather

CGWASD said...

Praying for you Carrie! It definitely sounds like God is giving you sustaining daily grace during these excruciating times.

I linked to your blog from Kate's on HSB.

~Annemarie

4-H Mommy said...

Wow, Carrie!
How amazing that Q slept through the testing--thus no anesthesia. God's hand there! Perhaps there to provide reassurance He's there through it all. I thank God you're such a warrior for Him and for the munchkins. They're all blessed with an incredible mommy.

So now we're praying that the treatment is not so hideous as originally thought. We're also praying that the doctors are wrong about future prognosis--that's been known to happen. The Heavenly Doctor is the only One always right and He can do amazing things for Q. He has started by blessing Q with you and the precious other four darlings.

Love and hugs to all of you. LOTS of prayer from our hearts for yours.