Friday, August 5, 2005

First, I think it's important that I give a big thank you to everyone that has either sent us an email, signed the guestbook, visited us, sent us something in the mail/flower delivery, and/or is reading these updates. Although I may not respond to each email or guestbook entry, know that your words of encouragement are very much appreciated. When I'm up at 2-3-4am taking care of business, i.e. feeling like a cow--mooooooo, I always tend to check my email & read the evenings messages in the guestbook. Nothing makes me happier & more relaxed as I head back to bed, knowing that we truly aren't alone in this & that so many people are praying for our family. So to our family & friends & the hundreds of you we don't know, THANK YOU.

It was another day in "Vegas" a friend of ours called it when he came to visit the other day, referring to all the alarms going off & lights flashing every now & then as the babies need attention for one reason or another.

The nurse informed me that Jacob had a long awake period this morning, and yes, I missed it. DANG IT! He was looking around quite a bit & talking back at her as she did her every 3 hour cares on him. They increased his feedings to 50 cc's today & he's tolerating it very well. I brought in his fuzzy blanket to keep him warmer, hopefully he can get off those heat lamps for good now!

I spent all afternoon holding him in a lazy chair with my feet propped up; even took a little snooze! Kind of hard not to when you have a baby bundle warming you up. Once daddy arrived, we put him back in his bed to change his diaper & check his temperature. Low & behold he decided to wake up for us! It was the first time Kevin has seen his eyes open since the moment he was born! Grandma & Grandpa also came to visit & got to see the lil' guy awake.

I did chat with both the neonatologist & the pediatric neurologist regarding testing for hyperexplexia. Without going into major details that I can't explain, we are still trying to determine if the test will be beneficial. The Dr that is in charge of the lab that does the testing in Wisconsin, doesn't believe Jacob's case will give us a positive result. Apparently there are 2 versions of this disease, 1) sporadic, just all of a sudden appears in families, & 2) hereditary & is common in families. The sporadic version has been pinpointed to a specific gene in the DNA, the hereditary version has not, so it ends up being a 10% chance of diagnosis. What's crazy to me is, doesn't hereditary have to start somewhere? At what point is it considered sporadic vs. hereditary? In my opinion, my case would be sporadic, as there is no family history whatsoever, but then again, when is it considered hereditary?

The test is $400, which is chump change considering how much the bill is on a daily basis with Jacob being in NICU, so that's not really an issue. My gut is telling me go with it & I'll have an answer in 7-10 days. I'll talk more about it with the Dr's this weekend & with Kevin. By Monday we'll have made a decision.

When Jacob first arrived in NICU, the neurologist felt this is what it may be, however, after he's seen Jacob for a week now, he's not so sure, but has no problem with having us run the test anyways.

He's also going to start him on a 2nd medication, Keppra, on Monday that he's hoping will help control his tremors a little more. Course it also causes sedation, so we may be back to square one next week with waiting for Jacob to level out & start waking up's such a vicious cycle.

Overall Status: Good Day
Growth Stats:
6 lbs 9 oz
Visitors: Celeste, Brooke & Cindy, Terri, Grandma & Grandpa

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