We went in to get her scans and talk to the neurosurgeon yesterday. It was a really long day. Poor dolly. We had to check in at the hospital at 8:15am, and with it being downtown Phoenix during rush hour, there was no way I was cutting it close. So we left home around 7 and got there right before 8 so we weren't rushed which was good. I got on the freeway to get home around 4:45pm. So, ALL day! It's hard to decide where to start...
We first went and got some iodine dye injected in through Jordan's shunt. It's suppose to go through and illuminate the spinal fluid so that during the CT scans you can better see where all the fluid is going. So typically that's in the ventricles of her brain, and down her spine area. Then after that she had her CT scans done, under anesthesia. She had to be totally still during the whole procedure and there's no way of that happening with a 2 year old=). The CT was of the cranium, c-spine (cervical spine- basically the neck area), and the upper thoracic (pronounced thorasic). Jordan did really good during the scans. I was right there by her side when she woke up but she was sure to keep an eye on those nurses all around. We went and grabbed some lunch while we waited for our appointment to talk to the Doctor.
When Dr. Rekate (Jordan's neurosurgeon) first came in to see Jordan, he asked me how she was doing overall. I explained that she hasn't been feeling well and has been extra cranky and all that good stuff. He asked how her swollowing, sucking, coughing, and arm weakness was doing. I told him they're still there but definitely better than they have been in the past. He excused himself from the room to call his nurse practitioner to have her remind him why we had the CT's done. She told him that it was because of the above mentioned reasons (I reminded him later that it was because Jordan regressed in her movement. She had started rolling over for a good chunk of time and then stopped). He came back into the room and told us that according to the scans, everything that could possibly be done to help those issues (the feeding/arm strength issues) has been done, and that those areas (head and neck) look great. He said the "cysts" on the thoracic part of her spine are from her "thoracic spina bifida" and that he'd only be able to tell more what they are if they opened her up, and he didn't feel that was necessary. So I asked him a question- If she has thoracic spina bifida (pretty much the middle back area), why was the lesion (hole) on her back so much lower when she was born? Remember, we were originally told that her spina bifida was around L4, L5, or maybe even S1. Now we're being told it's T6 or T7! You can see what a HUGE difference that is. Here's a diagram...
Hopefully that helps =). I know it helps me talk about it better. So, there's no easy way to explain what's going on. So I'll lay it all out there. The Doc said that Jordan has a bunch of cysts around T6/T7 area that are basically making her spinal cord flat like a ribbon, when it should be round and full and smooth. He said that all the spinal cord under the cyst area is really weak and small, and basically that there's not much of it there. In a nut shell, she has no functioning nerves/spinal cord from her chest area down. You can see on the chart what that effects on her body. A lot. NO chance of walking. Dr. Rekate is AMAZING. He's world renown with the work he does for these kids. He travels around the world teaching other neurosurgeons how to do things. They fly here to watch him. He's incredible. The best of the best. He told me that he's been working with spina bifida kids since 1970 (plus he does brain/spinal cancer, and all that kind of good "brain surgeon" stuff...) and he thought he'd seen everything he was going to come across. He has NO clue what this is, what could have caused it, or what to do about it. Is it causing Jordan pain? Maybe. Maybe not. Surgery? Maybe. Maybe not. Some possible reasons for the cysts: 1. Spinal stroke. Rhett and I feel this is possible since Jordan did have a stroke in the womb that caused her cerebellum to not be there. 2. The Doc said that amniotic fluid is "toxic" to spinal fluid. If too much of the 2 fluids mixed in the womb, it could cause these cysts. To us, very possible since her back wasn't closed in that lower area, and most kids have a sac like structure around the opening to somewhat protect it. Jordan didn't have any covering over her lesion. 3. With how bad Jordan's hydrocephalus was when she was younger, there was a really high about of pressure in her brain. Also with her Chiari syndrome in her neck, tons of pressure there. It's possible that all the pressure built up so much that her spinal fluid shot down the spinal cord so fast that it caused this damage. Again, they don't know for sure. This was the first MRI she had on her spine (the scan she had done in Feb.). They have no base line to go off of. They were so worried about all the other problems she had when she was younger that they didn't think to do any scans of her back. Plus, a typical spina bifida kid wouldn't have back issues like this... We now know that Jordan is anything but typical!
Dr. Rekate goes to a radiology meeting type thing on Monday where people get together to discuss cases they're unsure of what to do, get advice from others, bounce ideas off each other, that type of thing. He's going to present Jordan's case and see what others have to say. He's not sure what else others would know that he doesn't, but he's going to try. He's been at this profession for so long, and is so good at everything with the brain/spine! But I guess Jordan just wanted to throw him a fast curve ball. Stinker. He said that he wants to have answers for us but he needs time. He needs time to research things and try to come up with answers. He told me that if I don't hear from him within a week to email him and see what's going on. I appreciate his honesty so much. I don't think that being forthcoming is a typical thing with Doctors nowadays!
We also found out that Jordan has what's called "tethered cord". This is where the scar tissue from her initial back closure wraps itself around her spinal cord. In a typical spina bifida kid there would be a ton of discomfort, they would have a hard time moving, etc. The spine is suppose to be free flowing, not held in place by scar tissue. They would typically "detether" the area, or cut the scar tissue away from the cord so it can continue functioning. This is an ongoing thing in their lives. You cut away the scar tissue, it reattaches. These kids can have surgery after surgery with the same issue. The doctor said that since Jordan is paralyzed so much higher than where it's attached, she doesn't feel the pain a typical kid would down there. Also, with her weak spinal cord, she's already at a really high risk of having scoliosis. If he released what's holding her spine in a straight line right now, it would be really bad. So at least we don't have to worry about those surgeries!
I've been having a really hard time with all this news since I heard it. I know that Jordan is the same Jordan she was before we heard this all, but I just feel so bad for her. She tries to be so happy all the time but I can see a lot of the time that she is in a lot of pain and is just trying to fight through it. It's just not fair. And I hate saying that because life isn't fair. But she just needs a break. And Rhett and I know we need to be the strong ones for her. She's going to have such a rough life ahead of her. She's got such a good brother that I know will be her support through growing up. They're such good friends and they love each other so much. It's just that the more time moves on I see how little she's progressing in comparison to other kids her age. I mean, she's 2 1/2! The girl can't even sit up or roll over on her own. How is she going to be part of marching band, and go to prom, or dance, or do anything that every little girl dreams of doing!? Boy, I need to get myself together. Enough of that! Sorry for just letting loose there. Sometimes it all really gets to me. But through all this I know that Heavenly Father and Christ are watching over her. And that's what makes me cry the most. I know They are hurting for her just as much as we are. I pray for their comfort frequently and have been so blessed to feel their reassurances and a general peace coming over me as soon as I turn to them for help. Thank you all for your support. I don't think there are better friends and family than what we have. We love you all. Bare with us through our trials!
