I've been in a bit of denial about this so I've avoided blogging about it and mentioning it on facebook ...as though putting it out there would make it more real. But I feel that I've wrapped my head around it enough to be able to put it out there.
When Addison was 2 months old her pediatrician noticed that she had a sacral dimple, basically a small hole at the base of her spinal cord. He said the hole seemed deep and that he wanted her checked out by Neurosurgery to see what they thought. I was concerned but since Natalie had a similar dimple and she's fine I figured it was no big deal. So in June we headed down to Oakland where the closed Pediatric Neuro Surgery department is for Kaiser. We met with a Physicians Assistant who explained that what they were concerned about was a tethered spinal cord and that the dimple can be an indication of a tethered cord. She examined Addison and immediately decided she wanted to get an MRI to be able to check for a tethered cord, she also looked at Natalie and decided to wait to see what Addison's MRI showed before we took further action with Natalie.
We had to wait until Addison was at least 4 months old to get the MRI since she had to be sedated. We trekked back down to Oakland in September for her MRI and she was a champ, she handled the sedation fine, and was flirting with the anesthesiologist and nurse the whole time. The PA wouldn't give me any information over email or the phone so we had to wait two LONG weeks to be able to have a follow up appointment. Finally in early October we headed back down to Oakland to meet with the PA.
The minute she came in the room I knew the diagnosis was going to be a tethered cord, she was very nice and talked through my crying, and let me just process things slowly. Dan was great and took over asking questions about the surgery, hospital stay, recovery, medication etc. And the discussion of bringing Natalie down for an MRI.
The PA indicated that they definitely wanted to get Natalie in for an MRI to rule out a tethered cord for her but to know that they won't schedule both girls for surgery at the same time, and that many parents ask for that but they just can't do it. So of course my first thought is "Shit, "all the time" that means that this happens often that 2 kids have it".
We haven't scheduled Addison's surgery yet, they'd like to do it between 9-12 months so it will likely happen sometime between January and March. Natalie's MRI is scheduled for November 23, and I'm just keeping good thoughts for now that her MRI is clear. I think I can handle Addison needing surgery better since she's so little, she will have no memory of the surgery, the sedation, the pain, the hospital etc. But Natalie is 2.5 and has a memory like a steel trap. I have no idea how we're going to explain to her that she needs to be sedated for a MRI let alone have surgery.
So there it is. I'm holding it together, I'm staying positive, I'm trying to live in the moment. I know the surgery is routine, they do it all the time. But it is still spinal surgery, on my baby.
All this on top of my "we don't know what the hell is wrong with you" shit that is going on now it a bit much for one person...but I'll save that drama for another post.
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