Our daily routine consist of waking up and getting Nathan ready for school and onto the bus, feeding Lily and getting her and Cydney dressed for the day, preparing Cydney's food for the day, preparing Cydney's medications for the day, then we are usually off to Therapy by 930 or 1000.
Depending on the day Cydney has an hour or two of Therapy each day. As she gets stronger and on days she has more energy they will extend the sessions as she is eligible for three hours each day. She receives Physical, Occupational and Speech therapies. Each working on their own goals and objectives while working together at the same time. Many times we co-treat during at least one session a day to ensure she can see each therapist in the time frame Cydney is able to work before getting too tired. On Chemo weeks I usually give her a day to two off and just take my cues from her as to how much she can handle.
Once we are home from Therapy it is time for lunches and a much needed nap for Cydney and Lily. Cydney is feed small feeds throughout the day through her g-tube. We try to get as much as we can in order to keep her weight up and energy as high as possible. It can be hard to get enough in her some days, especially if the nausea is too bad and she ends up getting sick, sometimes multiple times a day. She is still mainly on the Liquid Hope/Nourish Formula as well as blended meals of what we have at home. She is sensitive to smells, therefore we have to be aware of foods we are making and to keep strong odors to a minimum. Each day is different in regards to how nauseous she feels and how much food she keeps down.
After a nap, hopefully, Cydney has a teacher come in for homebound schooling. Right now she is able to work for 30 to 45 minutes before getting too tired. She will work up to 4 hours a week, as that is the maximum she is eligible to receive. Nathan gets home from school by 3:00pm, Cydney enjoys going out to the bus stop and waiting for Nathan. She also gets to say hello to the bus drivers who have been asking about her and how she has been doing.
Evenings consists of more feedings, medications and bathing. Cydney enjoys her baths, they relax tired muscles and give her a distraction as she works on sitting on her own. She has been approved for a shower/tub chair. We are waiting for it to be provided to us from the Medical Equipment Company. We are also waiting for her custom wheelchair. We were told it would take several months to be ready, so hopefully any day now.
Some challenges we face with her right now are her emotions and her fears. Emotional lability is something that is a side effect of the Posterior Fossa Syndrome. She fluctuates from happy to sad and back in a manner of seconds. Sometimes she will even pretend to be sad about something and will end up in tears. She has a hard time with me being too far from her for too long, and her patience can be thin. It is a constant balance in being with her or close enough to her she is content and being able to do other things around the house. When she is upset though, it is usually pretty easy to get her mind to something funny or a good thought to cross her mind and she is laughing as hard as she can. She is also fearful to swallow, and while we have tried to motivate her with foods and things she liked before she is scared. It is a constant work in progress and will come in time, we can only offer the foods to her and hope one day she will be ready to try them.
Her voice has gotten much stronger and is much easier to understand than just a few weeks ago. There are still times we don't understand a word and it can get frustrating for her until we are able to figure it out. Most of the time we can find humor in our misunderstandings.
As we continue this journey I try to see the Joy in each day. Every day she is getting stronger, every day we are shown how much a fighter she is and how her determination will carry her far. There are many rough days ahead and we will face those with as much grace as we can and take them one day at a time.
|Santa at the Squadrons Children's Christmas Party|