Surgery is inevitable so they say

Well, this past week has come with more news of Jen needing surgery on her spine. In the past 8 months, it seems to have gotten worse by 25 more degrees. She is now at about 75 degrees, and the doctor says it will most likely continue to get worse. We will go back in 4 months, with the plan of surgery being soon after. This will give her some more time to gain weight and stabilize her nutrition too. Jen's seizures have been quieter up until Thursday. Well, here we go again with seizures. Of course another phone call from the bus company coming home Friday afternoon. Jen's seizures seem to be picking up again in numbers and are intense. There has to be a solution, but what?

Keeping us busy!

Jen has been keeping us busy this past couple weeks. One good thing, her seizures seemed to settle a bit the past few weeks, still having them daily but fewer and less severe. But of course if those are better controlled, she must still keep us on our toes! Last week we had a new problem with her feeding tube which called for a visit to the Hospital, of course this was on a day she was scheduled for botox in her ankles, and at different hospitals all together. Needless to say the botox appt. got cancelled and we dealt with the g-tube issue. Ever since she had the g-tube, we are also dealing with her comfort level of her TLSO brace. It has caused more problems than good lately. Along with her therapist we have decided to discontinue it for the next week as we have an orthopedic appointment and hopefully they will have a better solution. There was talk of a molded type chair instead of the TLSO last time we were there, so we are hoping to be able to pursue that. Jen is just so uncomfortable in the brace, and we know it is not helping maintain her spine at this point, so we will wait til next week for the final decision with the doctor. SO.....now we have the g-tube resolved for now, the TLSO on hold, her botox appointment rescheduled, thinking we are on a good path again......until late this afternoon, I heard from her school nurse, she has had way too many seizures today, and then on the bus ride home had 2 more!!! She is settled for the night, and I am hoping a good night sleep will help for a good day tomorrow. Like I said, she keeps us on our toes!!