Saturday, August 30, 2008

Nicholas's full report explained

I just wanted to die after his appointment, believe me we now know how lucky we are to have him. Nicholas actually has a very severe form of PVL (Periventricular leukomalacia) his is actually so severe we were told that 75% of neonates that are dxed with it as severe as his are dxed during autopsy!!! Of the 25% who go home they usually have severe spastic quad CP, 23% are severely mental handicapped, 38% are mod, 38% mildly, and only 1% "normal", most are either deaf or show severe hearing loss, vision problems, and so on. The doctor that was explaining it to me (while me and DS1 because he was with me) said "he should be much worse, with the amount of damage he has I'm surprised he's even doing most of what he's doing. He has so much be honest it's like I'm looking at the wrong child." To be honest I wanted to puke! He did say that there was no signs of a brain bleed or anything else and he feels it is 110% caused by the distress he was in during labor (the hospitals fault). He *TRIED* to pull up the CT report from their hospital (the one he had in December) and it's "missing" the only note about it was made by the ER doctor and it says "mom thinks CP caused by problems during delivery, CT scan shows everything is "normal" and this is a classic case of Cerebral Palsy with no known abnormalities". The doctor said this was total BS that there is no way even without contrast that they missed this amount of is just that bad his brain is no where near being "normal". This all leads DH and I to believe that since I admitted I think they caused the CP that the doctor/tech was trying to cover for them and hid it, which just makes me SICK! We are just so very very lucky to have him in the spot that he is in, he could have been so much worse. I am kind of thankful in a way that it took so long to find the real cause, I don't think if they would have put him down as having little hope for a normal life that they would have tried so hard to "fix" him KWIM? I've seen it first hand in clinic, kids that have the potential to live a normal life get better and more therapy then a child who was basically put down as having little hope of leading a normal life. Having it all totally explained and told exactly what it all means/meant was a bigger blow and bigger shock then reading it....we are SO LUCKY to have him and have him doing as well as he is doing.

Anyone else been told their LO has severe PVL??

Thursday, August 28, 2008


1, 387! Did you see that? Our blog has had lots of traffic in less than 2 months. It's a big deal to see you gals posting here for me. It's taken a lot of time to get going (and I still have several pictures to create & add that you've emailed to me), and I would be terribly sad if nobody came to visit it. Thanks!!! Have a wonderful day :)

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