Thursday, October 11, 2012

SB Clinic

Yesterday was Kaitlyn's check up at the Spina Bifida clinic and thankfully everything went well. She was champ through all her tests and the results were great. We met her new neurosurgeon and he was nice, so that was a relief. Overall they think she's doing awesome and progressing well. We do not return until around April of next year. :) One very happy mama here. :)

Tuesday, October 9, 2012


I have a lot of anxiety about Kaitlyn's 6 month check up tomorrow. Last year in Oct, we found out she was losing some sensation during her urodynamics test.  Neuro thought it could be due to her spinal cord retethering, so they scheduled us for an MRI a few weeks later, on Halloween.  That was the day my world stopped again, you can only guess it's bad news when the Dr asks you to step into another room, while the nurse holds the baby.  One would guess correctly, we did get bad news. Her spinal cord was retethered which meant another surgery and soon.

We scheduled it for early December, and then stressed over the next several weeks about another week long hospital stay, another 6 to 8 hour surgery, possible NICU, you name it, everything went through our heads. I felt horrible about having to leave the two older girls again but they took it as well as possible.

Every little thing she does or doesn't do now makes me wonder if she's retethered. She seemed to be falling down a lot more over the last couple weeks, but now not quite as much, but I can't recall if it is more than prior to us noticing. :( I hate this feeling.  I feel like things have been going great, but now I am waiting for the other shoe to drop. I hope it's all in my head.

I will be back to update tomorrow evening once we get back.  Please keep us in your thoughts and prayers.