CancerKiller's Baby update thread... - Page 8

Another update on how Dean is doing. Some might be a repeat with the doctor stuff. The biggest news is that he had an EEG last week and it is normal.

Overall, Dean is doing quite well. He is growing and gaining weight just fine. He has had no seizure activity that we have seen, and he is a fabulous night time sleeper (usually 9 p.m. to 5:30 a.m.).

The physical therapist sees us 2 times per month. Dean did have tight muscle tone, but we have pretty much worked through that. His movements are still somewhat "jittery"--especially his arms. But, that is a lot better than it used to be. The P.T. is helping make sure he meets his developmental milestones.

Dean does have a developmental delay with his vision. He saw the pediatric ophthalmologist at 11 weeks old and at that time he was tracking and visually acting more like a 4-6 week old. It is still hard to get Dean to track and look at something in particular, but he is doing a lot better in the past 5 weeks. His eyes are physically put together correctly, so we pray that he is just a bit of a late bloomer with his vision. We will see the eye doctor again in late July.

Dean had another EEG last week and we are very pleased that it is COMPLETELY NORMAL!! This does not mean that the brain damage is gone (we can only see that with an MRI), but all areas of his brain are active--which they were NOT while he was in the NICU. He will take 1/2 of his phenobarbital dose for the next month, and then stop the medicine completely on June 8.

There are 20 skills on the 3 month milestone checklist and Dean can do 17 of them. Two that he can't do are related to his vision--so hopefully he'll catch up later. The other thing is that he doesn't smile like he should. He does smile sometimes, but not as much as he should. Maybe he is just a laid back, thoughtful guy, or maybe since his vision is delayed, he'll smile more when he sees something to smile about. It would be nice to have him smile at us more. His language skills are a month or 2 ahead of schedule. Yes, we're pretty good talkers around here.

We are very pleased with his progress, but we still worry a lot. We just have to wait and see how he develops in the next year and pray for the best. Thank you so much for all of your support and keep up the prayers.

CK

Thanks every one.

I do anything for my wife and kids, but that is where I draw the line. My mug. MINE!

hehehehe...

Holy crap. It's been over a year since I posted in this thread. Sorry to those of you who I left in the dark.

Let see.... Dean is now 18 mo. He is doing very well and the only lasting problem from his brain injury is a visual problem. He was diagnosed with Cortical Visual Imparment which is a catch all diagnosis for undefined visual problems. It means that the eyes are properly formed, but there is a problem with the conection from the eyes to the brain. The visual therapist likens it to looking at the world through swiss cheese. It also seems that the problem is mostly limited to his right eye. He also has a block in his lower field of vision - more like not having lower peripheral vision. This has led to a delay in his fine motor skills, but his fine motor skills are improving over time. We only need worry if he stops progressing or regresses. He is beginning to talk which is another big milestone. He uses signs for many things and we are now trying to get him to use words instead. His gross motor skills - walking, stairs, running, etc. - are above average. He climbs anything and everything he can to his big brother's delight. We saw the neurologist last week and he is pleased with Dean's progress. The nuerologist doesn't see any signs of cerebral palsy so we may have passed that concern. Also, autism is a concern, but there aren't any signs so we'll put that in the back of our minds for a while. We went over the overt signs to look for, but given Dean's social nature, I don't think it is a concern.

Thanks to everyone for their throughts and prayers for him, and sorry for the long delay in an update.

Thanks, tate.

This was a sticky. But given my lapse in poting here I can understand why it is no longer.

Thanks all.