No Retreat, No Regrets

So this week was our long awaited appointment with the Neurosurgeon. He basically told us, aside from cutting Spencer open, that he couldn't tell if his spinal cord was tethered or not. We are awaiting his bladder tests next month to see how to proceed. Have I mentioned Spencer's bladder scares the living hell out of me? He may have a neurogenic bladder, which for Spencer means he stores his pee and has problems urinating. If this is the case, then it's likely the spinal cord. He has a 50% chance of his bladder getting better. Medicine also can help, but my biggest fear is cathing Spence. Not only would it be hard with his anatomy, but I know he would go nuts. The other option would be surgical. In my mind, when we start cathing or have a drain put in, that we are starting to fight a losing battle. Aside from his feeding tube, he has every potential to be independent as a growing child. However, he can't cath himself. We are now getting to the place where it's starting to become clear that Spencer's issues are more than just needing to catch up. The doctor's keep telling me that I'm not in denial about him catching up and being a typical kid. He's smart, you can't deny it, but I know he'll always have some issues. Now that we have a genetic diagnosis, we kind of have a guide. This guide doesn't mean that Spencer will be how all the other Ohdo kids are...on an Ohdo level, he's quite high functioning. I think he'll always have issues walking and talking. Even with his hearing being great with his aids, he will still have voice issues with that, let alone the cranio facial muscle weakness. I fear as soon as we get his AFOs, he'll always need them. I'm so sick of appointments. I'm sick of doctor's telling me he's fine, and another doctor telling me something could be majorly wrong. At what point do we tell them to fuck off? I have made nearly every medical decision for Spencer, told the doc what we were going to do, and they were essentially a sound board. Every time we go to an appointment we are told to come back in 3,6, or 12 months. When will we be told to only come back if something falls off? Do we really need to see ortho every three months only to come to the appointment and have them wiggle his foot? Or to go to his other ortho and be told he's doing great and to come back in a year? We have three eye doctors and three ear doctors. Seriously...what gives? I keep telling myself when he starts school I'll be able to start teaching. I want to teach. I need to do something productive beside being Spencer's mom. I love him with every single ounce of my being, but I want to go to work and feel like I'm making a difference. The likelihood is that there will always be appointments and that depresses the hell out of me.