Life as we know it

Zoie and I celebrated Rare Disease Day by visiting with our wonderful friend, and God mom, Miss Angie Carman.  Yes, this is Zoie sitting...she is getting pretty good! I found out about Rare Disease Day last year from a friend, did some research, and decided it was something definitely worth celebrating.  I think our family looks at it as a blessing.  We were given sweet Zoie for a reason, and we do the very best we can by learning, having support, and most of all loving her with a huge heart!  I love this day because it gives me a reason to celebrate how rare Zoie is. Here are some statistics we are finally sharing with the world after almost two years.  Zoie is one in 70,000 people worldwide with Cystic Fibrosis.  She is one in 7 people (know cases) worldwide with the form of Microcephaly she has.  She is the only known case worldwide who has the Cystic Fibrosis and the type of Microcephaly she has.....She is very rare.  We wouldn't h...

People always used to tell me to enjoy every moment of my life because in the blink of an eye it's like 10 years later.  I don't think I realized this until we had Zoie.  I feel like she was just born, just had her first birthday, and here we are celebrating 21 lovely months with her today.  Time really does fly! I also have people ask me why I celebrate every month with her; I guess my answer would be because I can :)  but really, I love celebrating every month because with Zoie she is learning new things every month, hitting new milestones, accoplishing things we have been working towards for months, and proving doctors wrong.  Isn't that worth recognizing?  I think so!  Don't worry, when she turns two in three months, I will start clebrating every three months :) At 21 months our little peanut, literally, is a whopping 16.8 lbs.  We were kinda set back by this winter, which I should probably prepare for every winter, with the flu and the...

This is something I normally would post on Caringbridge, but since we are trying to switch over to ALL blog I figured I needed to start somewhere and do a post on here that would be the following: When we went to see neurology for Zoie mid January, we knew we were headed into that appt to talk about doing a possible med switch.  We focused more on talking about sleep issues and the side effects that this new med may have, and focused little on remembering what it's like to mess around with seiure medication.  We could be those parents who say "no, leave her meds alone.  She is only having a seizure every other week."  But, that's not good enough for Derik and I, or for Zoie's doctors.  I wouldn't feel like a good mom if I settled on her having two or three seizures a month when I know we can do better, and I know Derik agrees. Usually doctors don't allow kids to be on more than three seizure meds at one time.  Obviously you want as little meds going int...

Most weekends in our household are pretty low key, with Zoie going to bed at 8, and Derik working a lot of Saturdays, we have become quite the home bodies.  Secretly, we kinda like it.  Yeah, we are those 26 year olds who like to stay home all the time ;) This was a weekend full of love.  I would like to think our lives are always full of love, and that we are constantly showing Zoie what love looks like. This weekend we had the opportunity to be a big part of the fourth annual 65 Roses for Cystic Fibrosis right here in Loveland.    As many of you know, our sweet Zoie Rae was diagnosed with CF when she was a tiny 6 weeks old.  Derik and I recap on that moment quite often, I'm not sure why we do except for the fact that it's a good reminder that when you are at your lowest point and you feel like life will no longer go on, it does; it even gets better when you figure out how to pick yourself back up.  I remember that day like it was yesterda...

The word blog is a bit intimidating, but I love to write, share my family, and share our life with the world so here it goes.....with us having a caringbridge site for Zoie, we are going to try to switch over to this.  Our thinking process was because with us growing our family, being a stay at home mom, and everything else, we like to share good news, our life, other kiddos, Derik and I, and Zoie....so this is a better way to do it.  Hopefully as Zoie keeps getting older, she will be in the hospital less and less and we will have less health concerns to share.  Either way, everything will and can be shared on here :)  We hope everyone enjoys our stories as much as we like to write them!