June 16th was Anna’s 2nd birthday! It’s hard to believe that she has only been here for two years, I can’t even imagine a time without her in it! Over the past two years, she has filled our hearts with so much joy and brought so much laughter and love to our family. Anna has changed a lot of things for our family and I can honestly say she has changed us all deeply for the better. She is the most loving and the most strong-willed little girl. She is determined and hilarious. I’ve learned SO much from being her mom. I feel so lucky every single day that I wake up to my kids beautiful faces!
Somewhere in the past year CF transitioned into completely normal life for us. We’re still learning every day but once we felt like we had a deep understanding of what CF is and how to recognize problems quickly with Anna things started to feel better. There are still scary moments when I feel surprised by the severity of her illness like the few times she was close to hospitalization this year, but the good thing is that those times have been few and far between. Her treatments and medicines have become routine and the sanitizing, cleaning, and just being germ-conscious has become second nature.
Anna seemed to enter the terrible two’s a little early so we’ve been dealing with some rebellion here and there. She went through a period of time when she tried not to take her enzymes, she would cry or run away. She also has her moments when she doesn’t want to do her vest and nebs. She’ll cry, kick, scream, etc. The way I’ve managed it is to stay firm, this isn’t an option for her and I want her to have that mentality in the future. It might sound harsh but for any other moms or dads struggling with the same issues I’ll let you know what works for us: tough love. I flat out tell her she can’t eat until she takes her medicine. Sometimes she’ll hold out for a little while but eventually she takes the meds and eats. During her vest if she’s causing major problems like pushing her nebs away then I tell her I have to hold her and I hold her and do them for her. She’s very independent so she’ll always eventually choose to do it by herself willingly rather than me hold her. It might sound harsh but it works for us. While I’m hopeful for a cure, until we have the cure in our hands and Anna has it in her body, I envision her future with CF in it. I want her to be prepared for taking care of herself on her own one day, I picture her in college and considering skipping meds or treatments and I know I want her to think “no, that’s not an option for me” and keep herself healthy.
Another recent change is that she is now taking the enzymes ZenPep 10,000 unit capsules so they are larger but she only takes 3 with every meal instead of 6. It’s a little more helpful and will be very helpful when she starts swallowing them whole. We made an attempt at her trying to swallow one and it really did NOT go well so we’re going to put it on the back burner for a little while before we try again. Also, while she is at a good weight she hasn’t been gaining very much so she’s drinking a nutritional supplement once a day. She loves PediaSure, she thinks it’s a milkshake! So it’s been going well so far. I can’t wait until her next weight check!
For Anna’s 2nd birthday party the theme was fairies! She is our little Tinkerbell so it was a good choice. It was only our immediate families and we all had a great day The most special part of the day was that my parents both unknowingly to each other gave Anna a trampoline as her gift, one for inside and one for outside. At her last CF appointment the physical therapist explained to us how great of a therapy tool a trampoline is for a CF kid because it essentially does the same thing as her vest. My dad was at the appointment and I just mentioned it to my mom and next week 2 trampolines show up at our house! It just shows how much everyone loves her by giving her something she loves that is also keeping her healthy! Now it’s like she’s doing her vest allllll day long, I mean all day long haha she loves to jump! She is currently jumping as I write this. She’s going to be the healthiest CF kids around!
Over the past two years I hope we’ve raised a lot of awareness and most importantly we’ve worked for a cure. Every year we will try to grow our fundraising efforts and we’ll never give up. We’re so blessed to have so many people who love our little Anna. You’ve helped us raise over $20,000 in just 2 years since Anna and CF entered our lives. We are so appreciative of everyone loving and supporting our family and every birthday Anna has is a gift for us in part from all of you. Now to look forward to 100 more birthdays for Anna!!