We are a few days into 2016 now and I am pretty glad to see 2015 has ended. It was a rough year for Casey. I know as she gets older we will have more and more hard days, weeks, months, and years, but I am hoping 2016 is MUCH better than 2015.
The Lows
Casey had a lot of health set backs through out the year. She is needing to wear oxygen pretty much all of the time now, and her growth brings on new challenges every day. We did manage to avoid any time inpatient though, that’s a huge deal.
We had a horrible time with nursing through out the year. Being without night nurses from May-August basically made us miss the entire summer. Casey was able to do a few fun things here and there, but there was not a lot of pool or swing time. Hopefully we have a short winter so she can get out there early next summer.
The Highs
Casey turned 9 in 2015! That means 2016 is the big 1-0!!! That’s HUGE! Casey had a really fun and special birthday party at her favorite park with most of her friends. It was a hot day, and the heat did take a toll on her toward the end, but she made it through most of the party and had a great time.
Casey finished her first year as a Girl Scout. She sold the most cookies in her troop. She really likes being a girl scout.
Casey was featured in a few publications, including The New York Times Photo Blog- The Lens. She was part of an amazing photo series showing the benefit of palliative care for kids like Casey. She was feature as one of the “Day in the Life” videos on the new Navigate Life Texas site. Her story was shared on many other publications through out the year as well, including local KVUE News.
Casey performed in her 3rd dance recital early 2015. She and her friend (honorary sister), Sam, had fun at the special needs Easter Egg hunt. Casey got to meet lots of mini ponies and started to adopt one (due to our nursing issues, the heat, and Casey’s health we had to put it on hold). Casey saw a few movies with her friends and even went and had her first professional pedicure. We had our Halloween party again in 2015. Casey was excited about the party, but ended up having to sit out when she was not feeling well. We had to miss delivering goodies to her doctors on Halloween as well due to tornadoes and awful weather. On Halloween night though, Casey did great. She went trick-or-treating with some of her friends in the neighborhood and had a lot of fun. Casey had a rough few days over the Christmas holiday, but she was excited to see her cousins, aunts, uncles and grandparents. It has been a while since out last big family holiday.
Things to Come
We have a lot of big plans for 2016. We hope to have a good health year for all of us, especially Casey. We hope to have a consistent quality nursing schedule. Casey will be getting a new wheelchair in 2016 (she has already outgrown her previous one). We hope for lots of good days and plenty of pool and swing time. We haven’t figured out the details, but we plan to do something extra special for the big 1-0 coming up in April.
We have some plans for CaseyBarnes.org as well. In order to help us provide some of the services we do, and host some of the events, we are looking into setting up a foundation. This will enable us to take donations and offer tax credits in exchange. With those donations we can provide even more for the special needs community. Keep your eyes out over the next few months for more details on this effort.
We hope that all of you have a wonderful 2016 as well.
