Tuesday, August 9, 2005

The increase in Klonopin appears to be working. Jacob's jitteriness decreased by late afternoon. He also had a big alert time from about about 11:00 - 2:00, where I worked with his suck/swallow quite a bit. I started using my finger so I could get a better feel for what he was doing. As I depressed his tongue, he would suck! If I depressed just behind his chin, he would give a good swallow. So I'm convinced that he has what it takes to do it, he just needs some practice! While I was working with him, his mouth area was less over-stimulated with no noticeable signs of jitters, big difference over yesterday.

Dr A. Johnson stopped by for another visit about 4:30, after he was very sound asleep. He was very impressed with the changes in his muscle tone over yesterday. The original plan was to increase his medication a little bit each day, after seeing him today, he's decided to leave it as is.

Jacob does appear to breathe a lot shallower while in a deep sleep, which requires him to have more oxygen. Dr A. Johnson said that we may have to make a compromise, see more jitters or have respiratory issues. We'll see what Jacob does over the next few days on the new dose.

He is feeling more & more confident that we may be getting to the bottom of this. He does feel that this is a 'recessive' mutation, meaning it took the exact 2 people to cause this. Like a 1 in a million chance of it happening again. He said the chances of it happening again to us is likely about 25%. It was just the right 2 genes at this given time between Kevin & I to cause the syndrome. Hopefully that made some sense to everything reading this! He explained it much better then I am!

He did mention that Jacob will most likely come home on a saturation monitor, so that we can keep an eye on his oxygen levels, which means he may come home with oxygen as well, maybe not for us to use all the time, but to at least have it here in case it's needed.

He's also been in contact with a Dr in New York that is very familiar with this disease. He's trying to find out where he can send a spinal tap for testing. Apparently, the spinal tap will give a more conclusive result then the blood test. Not sure how that all works, but that's what I know! Hopefully he'll get that information soon so it can be sent out & maybe return about the same time the other test does.

It was great to see him awake for such a long period of time. He cooed a lot & I think even let out some cries when it was around feeding time. There were a couple of other babies that seemed to cry a lot today & I think he reacted to that too. It was fun to listen to him!

Well that's all for today, more good news & more 'wait & see'.

Overall Status: Great Day
Growth Stats:
6 lbs 12 oz

Visitors: Colleen, Mary M. & Celeste

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