Delayed update

Some cute pics before I get into the nitty gritty!Jordan's so silly! She left this on her head for like a half hour =)
Bennett looks kind of dopey!

Jordan during an OT session. She LOVES this mirror! She looked in it and laughed at the girl in the mirror for quite a while.

I'm always apprehensive about posting updates about Jordan. I like to keep everyone updated but I really feel like there are more sick kids out there and I feel I'm a whiner sometimes and I'm not wanting to draw attention to us, hence the reason this post is quite a while after Jordan's neurosurgeon appointment.

We met with Dr. Rekate (Jordan's neurosurgeon) probably 2 weeks ago or so (I don't keep track of time anymore...). He didn't really have a whole lot more information than last time but this time Rhett was able to come so that was nice. I was very impressed to see my list of about 20 questions I had emailed the Dr. neatly paper clipped on the top of Jordan's chart. He' really wants to find answers to all our questions which is such a relief. He was honest upfront- he doesn't have a lot of answers. He did talk to a neuroradiologist about Jordan's scans and understands the anatomy a little better and they don't think the cysts are in her spinal cord, but just basically all around them. And I didn't ask him this question but in my estimation and from us looking at the scans again with the Doctor, I'm estimating around 100 cysts or so. I could be way off but that tells you the amount of damage that's done to her spine. These cysts are EVERYWHERE. It's really a shocker. He showed us on the scans where she had her back closure and that it was located in her upper Sacral region of her spine. He said that she should have hip flexion, knee flexion, and should really be doing a lot more than she is. He's really thinking now that the cysts came from the mixing of spinal fluid with the amniotic fluid in the womb. We mentioned to him that Jordan didn't have a "sack" around her lesion in the womb. That's why they didn't know about the spina bifida until she was born. This is probably the reason so much fluid was able to mix. There wasn't any barrier. Basically there was a whole in her spine that freely allowed the amniotic fluid to go wherever it wanted. He also showed us that there are cysts as far up as the T4 level. If you look at that diagram I posted a few posts back, you can see what those nerves are attached to. You can see where this is going...

One of our 20 questions was about life expectancy. The Dr. brought this question up to us. He had us lay Jordan down on the exam table (thankfully she had fallen asleep...) so he could watch her breath. He watched her breath for a good 1-2 minutes. He said that the nerves that affect your diaphragm are up in your neck. She doesn't have any problems with those, thank goodness. He said that there are nerves that go down your Thorasic level of your spine affect how your ribcage helps you breath (he explained it really well but I haven't been able to find the exact words for it... hopefully it makes sense...) or how the muscles in your ribcage help expand/contract to help you breath. Dr. Rekate didn't see these working. I guess when you're older (not a toddler) your body obviously needs more oxygen. The diaphragm can't provide this alone. So as far as life expectancy goes, he says this is a definite concern. He's happy that Jordan has good oxygen levels right now but said that he'd like us to see a Pulmonologist to look at that a little bit more in depth.

This was the majority of the new information we found out at our appointment. So really there wasn't anything new, just more information about what could be looming in our future. He got our permission to pass around Jordan's scans to get more opinions on what to do. He said that at first he thought about going into her back and popping each of these cysts and see what happens but then he thought also about the weak condition of her spine, and he would have to remove layers of muscle and tissue that's basically holding her back together to get to these cysts. He's really worried that it might be a big mistake tampering with her back structure at all. The risks are definitely outwaying the possible, but not likely, good that might come from it.