Thursday, May 1, 2008

Neurologist appt. 5/1/08

Ok first appt update ~ We saw Dr Miller with Texas Child Neurology in Grapevine and he was fabulous. Mike expressed from the start that we are looking for someone to be upfront with us, and not worry about hurting our feelings. The dr then replied he will be upfront, but the problem we are running into is the dr's just don't know. This man spent probably an hour with us going over all the sections of the brain and what they do. I started asking him a lot of questions and he stated he could tell I have done a lot of reading (information junkie remember?). He went through the MRI frame by frame and explained what each film showed. He basically said that Jude's major componets are there the cerrebellum, corpus collasum, stem, etc. The part they are worried about is the cortex. The cortex is the top part of your brain that controls learning, personality, etc. He said he wasn't that concerned with the cerrebellum measuring a bit smaller. He said the brain has a way of knowing it hasn't produced enough cells in enough area to grow so it compensates, and even though delayed it grows. He said the largest problem is we are dealing with two major issues. When you have one without the other it's no big deal normally, but we have two. First the enlarged brain ventricles and the second the thinning of the cortex. Which basically means the brain is not forming correctly. So where do we go? He doesn't know. He did say he was encouraged that the baby was moving as much as he is which shows good brain activity (but that's also a diff part of the brain). Basically he said the outcome "probably" wouldn't be good but they just don't know. He said he forsees one of four things....1. the baby is born with severe retardation and cerbal palsey. #2. the baby is born and has a normal life. #3. we don't discover an issue until he starts school and he has dyslexia or learning problems #4 he present with hydrocephalus and has to have a shunt. He said this isn't a case where a baby has 1 nostril and we know it's going to be abnormal. This is a case where the baby could just be developing late, but stastics show that "probably" (he kept making quotation signs" isn't the case. So we asked him when they would know for sure. If we continue the pregnancy not until 30 weeks and he would think they should take the baby by 34 weeks anyway, and deliver. So basically..............again they don't know. So do you terminate at the thought of your baby not being able to walk and talk? Do you wait and see how things turn out and pray for the best? Do you terminate even though things may work out? What a decision this sucks! One thing I did decide is that I am going to give ever doctor we have seen a link to this blog, all the scans, pictures, reports, and documents at the end of this pregnancy. Plus God willing if Jude survives they will get annual reports on him. That way if anyone else EVER deals with this rare situation they will have some information to go by. So anyway at least this doc spent some time with us. He was very sweet. When leaving he said "whatever decision you guys make it will be the right one". Oh and to top it off they measured me and it seems I shrunk an inch.......argh! I am guessing from the car wreck where jerko compressed my spine when we flipped. They also weighed me in front of Mike I thought I was safe because it was in kilograms. Seems he knows the conversion of Kilograms. DARNIT! Anyway, Mike again is being wonderful and is such my rock to lean on. I am thankful for that. Just stinks this isn't a case with a definitive answer. It's not hydrocephalus, or just enlarged brain ventricles, or just a bleed. It's rare and no one knows. So what does my gut tell me? Not sure. I seem to know when we are going to get bad news. I kinda feel like we are going to have an issue but it may not be as severe as we think. My family expressed their concern about my personal health and this pregnancy. True I have had some issues, but I think it will all be ok. Sure the stress and kidney take a toll, and I am very very tired. Work is hard to handle just from being exhausted, but I can handle it!! I just try to remember that there is never any guarantee with anything. We could be going through a normal healthy pregnancy and suddenly lose an infant to SIDS (God forbid!!!). So you just never know. So I will update the blog again after the rescan this afternoon. I am super busy at work today and it's taken me two hours now to finish this blog. So if you don't hear from me it's just because I am crazy busy.

Ps. By the way he made it clear this is a very rare situation. In fact DR Twickler is the best person to consult on this matter and she has only seen ONE other case like this. ONE! That's how rare this is.

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