So really, I have to pee??

Today was Spencer's neurosurgery consult. I was scared shitless and have been worrying about this appointment for weeks. Little scares me nowadays, but honestly the thought of my son having surgery on his spine terrifies me. We got mixed news. The MRI showed that his spinal cord ends short, but doesn't have the typical signs of tethering. We have a series of bladder tests coming up, which if we get bad news it could point to his spinal cord needing untethered.

Spencer may have a neurogenic bladder. If it is, he gets surgery and has a fifty percent chance of getting better. Right now we are concerned about his urine output. He stays dry throughout the night and usually for a few hours after waking up. It could be explained by blended diet and not doing feeds at night, but we're really just unsure. He will have a series of tests on May 9th to see if everything is functioning normally.

He was also fitted for AFO/SMOs today. Basically these braces will give him support while standing and crawling. The orthotist was mildly concerned about Spencer's left knee and the braces. Since he has a contractor in his left knee, his knee doesn't completely straighten out. In an AFO, this may make his left leg shorter. If that happens, he will get a heel insert for his shoes. Immediately I asked if he would have to have special shoes with a lift...because I had a teacher in high school who had to and they were super ugly...he assured me he wouldn't. We should have his braces back on the 14th, and then we have to go shoe shopping.

I'm so sick of catering to Spencer's various assorted medical equipment. He can't wear pajamas with feet in them because of his club foot bar and he can't wear zip up ones because of his pulse ox. Onesies are awful on him, not only because of his freakishly long torso, and that he has to get hooked up for his feeds. Trying to tube feed when he is wearing a onesie and pants is a nightmare. He can't wear adorable little hats because of sensory issues and his hearing aids. Gloves are the ultimate no-no! Now we get to buy shoes that are bigger than his natural shoe size because of his AFO's. I'm assuming that we'll have to have shoes that will also fit him without them on, because I'm sure there will be times where he'll be out of his braces. At least his feet grow super slow. We are looking at Nike Lunarglides and more Stride Rites, which we love. I'm hoping to find a new pair of Chuck Taylors that will fit around them. We'll see. We have put off buying new shoes because we knew the braces were coming, so now he needs a couple of pairs.

End of ramble!