Follow your instincts

Yesterday we had the second appointment at Shriner's. Gabbie had a EMG done, and when the doctor told me it was a simple surface EMG and I had nothing to worry about, I believed. Well, nobody told me that involved having a huge needle inserted in my daughter's legs without any numbing medication, with me holding her while she was screaming and looking at me with those eyes, as if saying "why are you letting them do this to me?". After that came the worse part - to listen to what the doctor had o say. The doctors have determined that she has an abnormality somewhere in her spinal chord. It may be tethered, or it may be something else. Whatever it is, is incomplete, because she is able to move her legs, but the muscles are very weak. The next step is a MRI, and she has to be under anesthesia for that. The doctors want it done as soon as possible, to determine the need for surgery, and with every neurological disorder, the sooner the better. So now we wait again, this time for an appointment for a MRI with Kaiser. We are very worried, we asked about prognosis, and they don't want to say much without first seeing what the problem and where in her spinal chord it is. As for her development, she is getting better at supporting herself sitting, now she can do it for a few seconds before falling over. She cannot bear any weight on her legs, so there is no attempt to support her weight when we hold her under her arms. But other than that, she seems a very happy normal baby.

Gabbie a couple of weeks ago. Look at her foot and how different it looks - and the doctor continues to say it is normal?

So you can imagine how scared we are, but we are specially frustrated, because I have been talking to her pediatrician and podiatrist about this for months. They always dismissed it, especially the pedi, saying that I had nothing to be worried about, that she would eventually reach her milestones, that I couldn't compare babies, etc. How can they say that? How can they be so dismissive of what we are trying to say? They see them for less than 10 minutes every 2 or 3 months, how can they know more than parents that see the baby every day? I had to beg her pedi to send the referral to Shriner's because he never sent us to see a specialist. Maybe if we had seen one when she was even younger, the prognosis would have been different. I am so angry with the system right now. Why doctors always assume that we are a bunch of stupid parents that just whine and don't know what we are talking about?