I keep putting off posting because I want to post with a new pic, but we have not had the camera handy while Casey is in a photo mood and when we do have it she is not interested in posing at all. I will hopefully get a new pic soon and will just post it on its own rather than not posting at all. Lost of stuff to post.
We have decided to find a different nurse for Casey. We had Vicky come in for a couple of weeks/shifts. After a while we decided that we think we would be better getting someone with more hands on experience with special needs kids and the types of equipment Casey uses. Vicky was really nice, but we were not looking for just a nice person, we need a nice person with a very specific skill set. The agency we use to get nurses is really short handed right now so I am not sure how long it will be before we get a replacement. For now it is back to just us.
Casey has been doing some crazy stuff. About 3 weeks ago out of no where Casey started waking up at 12:AM on the dot. She would start out fussy and within 30 minutes go from fussy to full out screaming. I would pick her up and take her to the other room and she would stop screaming and go back fussing. We tried everything to calm her down. Every kind of medicine, positioning, cool her off, heat her up, add light, darken, make it quiet, make it louder, keep her up all day and wear her out, let her sleep, everything. No matter what we tried nothing helped. She would fuss until 4:AM then like nothing happened she would go back to sleep. It was so weird, and you could set you clock by it. After 2 weeks of ZERO sleep we had an appointment with her nuerologist. I told the doctor all about it and she wanted us to try Melatonin. We tried this for a few days and it did not help at all. I called the doctor’s office back and they ended up calling in a new medicine. Neurontin; it’s for seizures and neuropathic pain. We have used this for the past couple of nights. It works really well. Casey gets to sleep between 8 and 9 and she sleeps through the night. She still gets junky and needs suctioning, but she sleeps through the suctioning. We may have to work on the dose some to get her a little more alert in the morning, but it is really nice to get her to sleep through the night.
Casey went in to get her flu shot this week. It was nice, the office was ready for us. They even had a little pile of sheets folded up for us to use to prop Casey up. We were in and out in less than 30 minutes.
We are looking forward to Thanksgiving. Hard to imagine it is already right around the corner. We are planning on spending the Holiday with my family at my grandparents house. I will get pictures up soon, I promise. Until then, as always, we hope everyone is well.