And we have some normal!

Spencer had an amazing couple of days at therapy. He decided that he really likes Capri Sun and started drinking from his sippy cup like a champ after therapy today. He was just, "eh," about it after therapy yesterday, but give him a sugar filled drink, and he's very interested. During PT yesterday he got into his walker without throwing a fit and took like six steps. His PT, along with us too, are really noticing what a huge difference the AFOs are making in Spence. He is also starting to stretch out his left knee! We got some sad news today, which turned into happy news. Spencer's absolute favorite therapist is leaving the practice to start a school for autistic children. While she will do so much good, I told her she was breaking our heart. I mentioned that we always said we would follow her wherever she went, but we can't follow her to an Autism school (one diagnosis we don't have). She asked me to talk to her outside of the building and told me that in order to get the license to open the school, she and her partner had to start their own private therapy practice. They are waiting for paperwork to come back from the state to be approved to bill medicade. She said in addition from doing the school stuff, she is doing home health and wanted to continue to be Spencer's OT. She says she wants to be there when he walks across the stage for high school graduation, for everything. It's amazing that we have a therapist that loves Spencer almost as much as we do. You have to understand, these two have some incredible bond. Spencer absolutely lights up when you even mention her name. I knew something was up when she was nearly in tears when she saw us today and I was too (another mom told me while we were in the waiting room). She has always freely admitted that he is her favorite patient. I also told her if she needed any help with the school, that I would be more than happy to help out...maybe my degree in education can help do some good. We may have to use a different OT for a few weeks, but it looks like Miss Courtney is going to stay in our lives for a while. I've been pretty concerned about Spencer's lack of speech lately. His speech therapist has admitted that he hasn't talked for her at all. He goes through bouts where he talks a lot for a few days and then nothing for months. I'm also starting to think about school and preschool...more specifically the accomidations he'll need for school. We've been talking about getting him a wheel chair for school. Even if he is awesome at his gait trainer, he still may need a chair for field trips and such. I'm going to talk to the school about what they require in the fall so we can start the process.

Xmen.

So Spencer had surgeries number 21,22, and 23 this week. Keep in mind he's only been alive for 26 months. He had his other testicle lowered, his superior adendoids removed and new PE tubes placed. His new ear tubes are a little more permanent than his old ones, which we are thinking he'll need long into his childhood since he is a Pierre Robin kid. The surgery went fine, although Dr Alam, his urologist, took longer than he should of and that worried us. Spencer has some screwy anatomy. He was only able to bring his testicle to right above his penis, like the other. He says he can finish the job when he's older. He said this testicle, like the other, was in bad shape but is working, although it's likely that Spencer cannot have children. We also discussed the results of his bladder study. Spencer' bladder is the wrong shape and borderlines on neurogenic. While this means we'll likely have to go searching for the tethered cord, it also means that we will hopefully avoid cathing him for the long haul. Of course he'll still have to see urology every six months and will have other surgeries in that area in the future, but for right now we're done on that area of the body which is a relief. Urology also put a new idea in to our heads. Kids with cranio facial anamolies typically don't have anything wrong with their spine. He also says it's not an Ohdo thing either. So as of now, his bladder abnormalities and spinal stuff is unexplained. While kids with Ohdo do have skeletal malformations, it's typically with limbs. I'll talk to Hopkin about it next time we seem him. He'll know more or try to figure out if Spencer has another genetic condition to add to the mix. We also followed up with dentistry the day before surgery. I was super paranoid about his teeth and the buildup that was forming on them. The dentist told us the buildup was actually a protective coating that kids with feeding tubes often have. So basically Spencer has super mutant strength teeth, which further confirms our belief that Spencer is a future member of the Xmen.