Our stay at Cook Hospital was grueling. The doctors and nurses were great, but having to sleep deprive Lily on two separate nights was heartbreaking. She was miserable and would scream when we would wake her up. I just wanted to let my sweet baby girl sleep! She also had four ivs while we were there. At least the last poke was while she was under anesthesia. Lily had a spect, interspect, and an MRI with contrast. We were there for five days and, unfortunately, in the end, she was not found eligible for brain surgery. It appears that a few areas of her brain seem to be culprits in her seizures. So for now we must seek acceptance. This does not mean that we won't try new drugs and seek out any treatments that might help her, but for now 2 - 5 seizures a day will be the norm. She will soon be getting a Kid Walk (see picture attached) to help teach her to get mobile. It looks so sad, but I really hope that it helps her to learn to walk. We love Lily so much and just want to do everything we can to give her great quality of life.
How wonderful to see Lily getting this, even if it comes with conflicting emotions for you.
ReplyDeletePlease post if you begin a fund...certainly there are many who would love to help Lily out.
She is a truly sweet and beautiful girl.