We are all transitioning from hospital to home, city to country, and spring to hmmm…winter?
Nothing can compare with the comforts of home and being around the people who love and know you the best. We are enjoying it very much.
Ryleigh is definitely improving at a faster rate being home…as you can tell from the picture. Ryleigh went outside and rode her bike for about 20 minutes last night. She was so happy that she had outgrown her previous bike and has now moved up to Chloe’s bike! It is good for her to start getting some exercise and move her body.
Although the times are great at home – we are still dealing with the issues of Ryleigh’s health. As her digestive system is working much better – with appetite increasing and her being more active – her stoma is producing very well. As a result, we are having difficulties with her pouches and the phalanges sticking to her body well enough not to leak. She also still has part of an incision that is not healing properly and it oozes. So, we cannot put the phalange over that part resulting in a weakening of the seal.
She has had her bag leak almost every day and we are trying to figure out how best to manage. Nothing is worse then having Ryleigh experience a major leak (explosion!) in the middle of the night. I am working on making sure everything is dry and clean so it adheres properly. But, we are still having issues. I feel so badly for Ryleigh. She really wants to get back to living her life, going to school, hanging out with friends, even doing chores. However, it is limiting right now as she is afraid to move too much with the chance it may leak again.
She had a good cry this morning as did I — she is grateful that she is not in pain anymore but sad/mad at the fact that she has a stoma/ostomy. It really is yucky and not pleasant. I have asked her if she is sad about missing her colon – and she said not at all…she is glad to see it go! Hopefully things will get easier and she will welcome her ostomy/stoma.
I am dealing with things okay. Ironically, being at home has been a bit challenging. I guess I thought I could lounge around and relax when I returned but life continues on whether I like it or not. Chores still need to be done, errands still need to be run, and we have appointments to attend in Vanderhoof, Prince George, and Vancouver. I am trying to take some time to relax and enjoy the small moments — walking Jakob while swans and geese fly over, a hot bubble bath, laughter at the dinner table, and morning coffee with Dan.
What I do know for sure is that I count my blessings and really do appreciate all the wonderful parts of my life. Daily, I need to put things into perspective and realize that daily struggles and issues are nothing compared to the events of the last three months. I know that all of us are strong and can endure — we just need time to make the transition to this new life we are living. I thought that my blog would be ending as we returned home because I thought thing were over…they are not over just different.