I know I have been quite sporadic when it comes to blog posts, and it has been far too long since I have shared anything. To be honest, life has been quite crazy around here, and the time for me to blog is quite limited to even non-existent. I'm trying to make a commitment to myself to update once a month at least, even if it is very brief. I have received several e-mails in the past few months asking if I am okay because readers worry when a CFer goes dormant on a blog for awhile. I appreciate their kindness, and I don't want to worry anyone so I plan on holding myself to this goal as much as I can.
With that said, there isn't much going on CF wise for me which is a fantastic thing to be able to write. I pray it stays that way each and every day. I am now almost 19 months out from having my first child, and my lung function has remained stable around 83%. There are days when I am better at getting treatments in than others, but for the most part I am quite compliant. When I miss a treatment, I work hard on adding one the next day or even in the middle of the night. Some days are easier than others to achieve this, but 100% compliance is a goal I consistently strive to achieve. I attribute my good health to my consistency, my great CF team, luck, good hand washing, and having a very active 1 1/2 year old.
Yes, the light of my life keeps me on my toes day in and day out. She is loud, opinionated, stubborn, generous, loving, kind, and incredible. She has the best personality, and while the traits above can be quite challenging, I also love seeing her testing boundaries and pushing limits. She is becoming her own person, and it's the greatest joy in the world to watch. We are still struggling with a dairy allergy, but we hope she will outgrow it as time goes on. She is a tiny peanut and most people can hardly believe she is even one because of her size. She's our little love, and that is just fine with me! Sydney's favorite activities right now are reading and doing puzzles. We spend hours each day working on different puzzles and reading dozens of books, and I can't tell you how much it warms my heart to see her love both. We try to limit TV time to just when I am doing my treatments, and we are pretty particular about what she watches. Right now the only actual show we allow is Daniel Tiger. I love that it teaches morals and skills on managing emotions. Hopefully as she grows we will continue to limit TV time as we are now.
Turning the corner to a harder topic, I wanted to update those of you who have been following my sister's journey with Stage IV colon cancer as well. In the last month, she has started with hospice care. She is at home, and we continue to enjoy many days with her as we make new memories and relive older ones together. She ran out of treatment options as each chemo quit working, and her liver was too damaged to pursue clinical trials. It was and still is a hard mountain to climb as we wrap our minds around the future, but we spend time each day feeling grateful for the time we are given and the moments we can share. Thankfully, hospice has made her quite comfortable which gives her more time to spend with family and dear friends.
Surprisingly, this pretty much sums up everything that has happened between April and now. We have been going through the days and enjoying family and friends as much as possible. As much as I love blogging and writing, I love spending each second I can with loved ones and my sweet little girl even more. It may mean less updates and less time to hone my writing skills, but I know that all too soon I won't have the time to spend with my sister, and my daughter will end up in school (much too soon for my liking) so I cherish each moment I have now. I will try my best to keep you all updated more frequently, and thank you again for those who have reached out to me to make sure all is well. It amazes me how kind and wonderful my readers are, and I am sincerely grateful.
I hope everyone has a wonderful Christmas and very happy New Year if I don't manage to update before then!
With that said, there isn't much going on CF wise for me which is a fantastic thing to be able to write. I pray it stays that way each and every day. I am now almost 19 months out from having my first child, and my lung function has remained stable around 83%. There are days when I am better at getting treatments in than others, but for the most part I am quite compliant. When I miss a treatment, I work hard on adding one the next day or even in the middle of the night. Some days are easier than others to achieve this, but 100% compliance is a goal I consistently strive to achieve. I attribute my good health to my consistency, my great CF team, luck, good hand washing, and having a very active 1 1/2 year old.
Yes, the light of my life keeps me on my toes day in and day out. She is loud, opinionated, stubborn, generous, loving, kind, and incredible. She has the best personality, and while the traits above can be quite challenging, I also love seeing her testing boundaries and pushing limits. She is becoming her own person, and it's the greatest joy in the world to watch. We are still struggling with a dairy allergy, but we hope she will outgrow it as time goes on. She is a tiny peanut and most people can hardly believe she is even one because of her size. She's our little love, and that is just fine with me! Sydney's favorite activities right now are reading and doing puzzles. We spend hours each day working on different puzzles and reading dozens of books, and I can't tell you how much it warms my heart to see her love both. We try to limit TV time to just when I am doing my treatments, and we are pretty particular about what she watches. Right now the only actual show we allow is Daniel Tiger. I love that it teaches morals and skills on managing emotions. Hopefully as she grows we will continue to limit TV time as we are now.
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| 18 month photos and Christmas photos as well. |
Turning the corner to a harder topic, I wanted to update those of you who have been following my sister's journey with Stage IV colon cancer as well. In the last month, she has started with hospice care. She is at home, and we continue to enjoy many days with her as we make new memories and relive older ones together. She ran out of treatment options as each chemo quit working, and her liver was too damaged to pursue clinical trials. It was and still is a hard mountain to climb as we wrap our minds around the future, but we spend time each day feeling grateful for the time we are given and the moments we can share. Thankfully, hospice has made her quite comfortable which gives her more time to spend with family and dear friends.
Surprisingly, this pretty much sums up everything that has happened between April and now. We have been going through the days and enjoying family and friends as much as possible. As much as I love blogging and writing, I love spending each second I can with loved ones and my sweet little girl even more. It may mean less updates and less time to hone my writing skills, but I know that all too soon I won't have the time to spend with my sister, and my daughter will end up in school (much too soon for my liking) so I cherish each moment I have now. I will try my best to keep you all updated more frequently, and thank you again for those who have reached out to me to make sure all is well. It amazes me how kind and wonderful my readers are, and I am sincerely grateful.
I hope everyone has a wonderful Christmas and very happy New Year if I don't manage to update before then!
Yay for an update! I'm trying to make more time for my blog too. Being mom sure does make that hard, but I do miss it.
ReplyDeleteWe really like Curious George for A. He usually only gets to watch TV right before bed and that show is very calm and makes him think a little more than other shows. Maybe Sydney would like it too.
I completely agree about missing your blog. I love writing, and I love having a place to share my thoughts. I'm so glad you are also making more time for your blog! I'm headed over to read it now! :)
ReplyDeleteI have turned Curious George on a few times. Syd isn't a huge fan right now, but I'm guessing she will be in another 6 months or so. I love Curious George. I'm also a Disney fan so I don't mind her watching Mickey, Minnie, etc. Thank you for the suggestion!