Special Needs, Medical, Parenting, Complex, Chronic, Tools, Resources, Support, back to school
Casey went back to school this week. She does home bound, so back to school is really back to her playroom. She is in 4th grade this year. She has the same teacher and most of the same therapists working with her, which is fantastic. The only therapist that changed was her vision teacher (VI). The new VI is actually Casey’s previous teacher so that worked out really well too. This year we are trying 2 two hour days for Casey’s school schedule. Last year we did the same number of total hours but spread it over 3 days. Casey was not feeling great this week, but she did get through all 4 hours of school.
We have finally found a few good night nurses that have split up the nights we needed covered. I have spent this past week trying to get them all trained so that we can get back to sleeping at night around here. All of them seem really good, and they all took to Casey right away. Hopefully we can get back to our normal routines again now.
Casey had a rough week, and she got to show some of her new nurses what a really busy shift looks like. She was up all night Thursday and we could not figure out what was going on with her. Her heart rate was up and she was just miserable. She would sleep for 10-30 minutes and then wake up crying and upset. Her pathetic little cry just breaks your heart.
On Friday morning I got her settled and she looked like she was going to sleep some on the couch so I went to get some sleep after the day nurse came in at 8. Around 10 the nurse was knocking on my door saying that Casey’s ear looked bad. She was on her last day of drops for an ear infection in her left ear, the bad ear that has chronic infections. The ear that looked bad was her right ear though. This is usually her good ear. With how miserable she had been for days and how bad the ear looked we decided to take her in to see her ear doctor. He cleaned out so much crud for her right ear, and a little from the left. The right ear had a small perforation as well. He added a few more days to the left ear for drops and we started a full course of drops for the right. He put Casey on a round of oral antibiotics as well since it was a bad one. He also sent off some of the drainage for cultures. We expect they will call sometime on Monday to let us know what is going on in her ear. The picture is her waiting in the exam room and she is not very happy about being there. She cheered up a little when they gave her some ‘My Little Pony’ stickers.
Casey usually responds pretty quick to antibiotics, so hopefully she will feel better this weekend. She had to miss her first day back to Girl Scouts Friday afternoon. She is excited to make it to the next meeting. There are 2 new girls in her troop this year and she loves to make new friends.
I had a special trip last week. Neotech, is a company that makes products that we have used since Casey was born- their products are actually in all of our NICU pictures. We have loved their products, and them as a company for many years. They invited me to come to their conference last week to share Casey’s story. The conference was mostly NICU nurses and other NICU staff. Most of the day was talking about medical topics by medical professionals. I was the last speaker. Neotech wanted me to help everyone realize how much they really do impact the lives of the families they care for in the NICU. It was a really good day and I was honored to be asked to share. I always love telling Casey’s story. The conference was outside Los Angeles. This was the first time I had been back since we moved away early 2008. It was nice to be back. I flew into LAX and then went up the coastline to grab my favorite sandwich before driving inland. I forgot how beautiful the California coast is, and even started to miss California a little. That did not last too long, as soon as I entered the 405 and then sat for hours in traffic I was feeling a lot less nostalgic. Other than the traffic though, it was a great trip. I got to spend time with some amazing people and Casey and Tim both did great while I was gone. I missed them like crazy, but they did great.