So aggravating

I don't even know where to start. Grace has been having fevers since Wednesday, it went away Sunday evening, and then it came back tonight. I've been doing a lot of research about her sacral agenesis, tethered cord, and the fluid in her spine and found something called syringomylia, also known as hydromylia. This is a cyst or cavity that forms within the spinal cord. That's what she has. That's what she got after the neurosurgeon did the tethered cord repair surgery. She's got a pocket of fluid in her spine, and from one MRI to the next, the pocket of fluid has grown. Now, not by leaps and bounds. But enough to be seen on an MRI, and to cause alarm. But does the neurosurgeon tell me it's called "syringomylia"? NO. Did she tell me that if this "syrinx" (another name for the actual cyst) expands or elongates too much it could destroy the spine and cause paralysis? NO. She said, "well, we'll keep an eye on it. But we won't do anything unless she starts to lose muscle tone/use of her legs." So I was like, "ok whatever you say." But after researching today, the loss of use of her legs is because of the spine becoming damaged. Unrepairable damage. Holy crap! How can that NOT be something that's important to share with a parent? And why is it that she's told me they won't do another surgery unless the loss of movement begins? Which means you won't fix the problem until it already has started damaging to spine. What sense does that make?! Deeper into the research I found that once the syrinx forms, any pressure differences in the spine could possible result in damage to the spinal cord. So there could be damaging forming as I type, but because it's not enough to show obvious changes in leg use, we aren't doing anything about it. So, I'll move on and get to the reason I brought up the fevers. So she's not just been having the fevers. She's been sweating really bad, and it changes so fast that the next time I check for sweat, she's dry. Also, she's got neurogenic bowel, which means she shouldn't be able to go on her own, but now for some reason, she's been having tiny voids. Weird? But after researching after a while, I found that the syrinx could cause spinal arachnoiditis, which is an inflammation of the membrane surrounding the nerves of the spinal cord. This could be caused from an infection/virus, direct injury (maybe from the surgery?), chronic compression of spine nerves (from the tethered cord?) or complication from spine surgery. This could cause disruptions in the parasympathetic and sympathetic nervous systems leading to abnormal body temperature and sweating, and bowel control issues. All of which Grace is having.

So I'm trying not to freak out about this. I'm emailing the neurosurgeon tomorrow morning, if not tonight, and I'm going to give her my hypothesis about what might be going on. I also noticed that when Grace sits in her old car seat, which is more confining, she screams and cries. So is that because of pressure on the spine that had work on it? Because she ONLY cries in that car seat, not her new one. So there's all these things that just don't seem to be adding up.

To top it all off, Grace has two more teeth coming in, and when we went to see her ped. he said fever could be from teething. Right, that's just wonderful. She just happens to have a reason that the doc could use as to why she's getting such high temps, yet she's NEVER gone that high from teething, especially when she had 4 molars coming in at once. I just want to know what's going on with her. I want to know why all of a sudden, a fever is haunting my child, and why the doctors don't seem to care! And why I have to be the one researching, instead of them researching?!

Oh, wait, that's not even the topper!! I threw my back out again! That's just dandy. I don't even know what I did to do it, but I was sitting here typing earlier and it just tightened, took my breath away, and now I can barely walk. I'm just feeling so discouraged because of all the issues we are having. I really hoped that my typing it on here would help relieve some of the stress, but it's just not good enough. I feel like I'm on a roller coaster, and as everyone knows, they go up and down. Well, I'm on a down, and I don't seem to be going up anytime soon. I mean, there's pluses in my day. I had a friend come observe Grace's therapy this morning, and then we met for lunch and chatted for hours, but those ups are so small that you can't even feel them. Uh. Deep breath.

Grace has been getting up in the middle of the night. Last night, I went to lay my head down at 11:45 pm, and she started crying. So I gave her a bottle, and when I laid back down and was almost asleep (like 2 am, yeah, alot on my mind so it's hard to fall asleep...plus my husband snores.) and she started screaming this time. I was pretty out of it (sick and tired of having to get up) so I gave her some tylenol, gave her teething tablets, stomped around to show my disapproval, and went downstairs to watch tv until she finally decided to fall asleep. Well, as I sit here typing this at 12:06 am, I see the lights on her monitor going crazy. I just had to go up there to give her a bottle at 11:45 pm because she was fussing. She fell asleep on me so I put her back to bed, and now she's not going back down. I am getting to where I despise putting her to bed because I know she will be back up around the time I'm going down. And I hate that I don't know WHY she's doing this in the middle of the night? Why she just can't keep sleeping through the night like she was doing two weeks ago? I don't UNDERSTAND?!

Christmas is 10 days away. No decorations are up (and yes, that means the tree too) and I have absolutely NO holiday spirit. I told the hubby a couple days ago that I won't mind if we don't put the tree up. I mean, Grace won't understand what it's for anyways, it's a lot of work and I'm plum exhausted, and on top of it all, I'm feeling the horrible grasp of depression wrapping it's long black fingers around my body. I've overworked myself trying to do fun Christmas stuff (family letter, baking 300+ cookies for friends/neighbors) and so now I just want to be done. Gosh I sound so dismal, don't I? I'm sorry! Just venting. For the sake of pictures though, and for tradition purposes, it will probably go up. Maybe this weekend.