Cheriz: My life with Cystic Fibrosis

My husband and I have been foster parents for just over a year. On August 4th 2017 we took in our first set of kiddos. If you have reading my blog you will know I refer to them by Cajun,Barbie, Shoes. All three are amazing kids! It was a whirlwind of lots of learning, and firsts for them. But the learning and proud moments made up for the pure chaos.  Being a part of all that learning, creates a bond. A strong bond.  No matter how tough is was on us, those kiddos had a million times worse. Saying goodbye to those two was hard when they moved out. I cried for days, maybe weeks. Sometimes I still do randomly. When I see a Peterbuilt Semi Truck or anything Unicorn, I think of them. I have my memories and I knew when I said goodbye is wasn't forever (at least not yet). Since we still have Shoes with us, we get to see Cajun and Barbie at all his sibling visits for a few mins. I still miss them, but I get to continue to watch them grow and learn from a far at least. We have had of respit...

Wow, I can't believe it's been a year since we moved our blog to www.MoreThanDNA.org! A lot has happened in that year. My husband and I became Foster Parents to some amazing kiddos and still have one of those kiddos living with us. We have loved having "Shoes" with us and can't believe how much he has grown and learned in the year!I'm so proud of him! We have court next week, so prayers that it goes okay (and doesn't get continued again- that just drags it out longer for the kids). He is now 39 months old and starting Pre-K this month! Other big changes include: Some renovation to our home (complete Bath rehab & updated plumbing throughout), I started a new gene-targeting medication (symdeko) that is helping to keep me stable these last 3 months, and I got an AffloVest! I'm loving my new portable vest! Also, career wise...we both switched jobs! Andrew also started Seminary this summer to get a Masters Degree in Divinity. He has always wanted to be ...

I feel so incredibly fortunate to have such amazing people in my life. This Father's day I not only celebrate my father (Grandpas, Father In Law, Uncles, and more), but I am happy to celebrate Andrew's first "Father's" day! He may not be a biological father, but he is a father figure and role model for all the kids we have in our home. Every year in the past I have focused my blog on my own father. I even wrote a blog "My Dad Deserves More Than One Day" - Please hop over and read it.  Because my dad is simply amazing and I think the whole world should know that. The picture to the right is of Dad and I dancing at my wedding. The song I picked for us was" You've got a friend in me" - It seemed the perfect fit. My dad is upbeat, fun, loving, and always there for me. This is one my favorite pictures because we are both smiling and laughing (shows our true personality).  I have my Dad's personality and this pictures reminds me that. :-) I...

I was lucky enough to try on both the Monarch and AffloVest (portable therapy vests) while I was in the hospital. Luckily, since those two hospital stays I have been doing fairly well healthwise. I caught one virus that knocked me down for a bit, but my immune system fought it off with meds at home. No hospital or IVs this time, whew. I have needed to be healthy lately, considering I have been super busy between work, "Shoes' Appointments (our FosterSon), and trying to plan the Princeton CF Walk. I'm super glad I am so busy with work. I have three closings over the next 3 weeks, YAY!  While I love working and being busy with life, it really has made me realize I need a portable vest. It's hard to get "Shoes" up and ready, while I do meds, and get my work stuff packed up too. So I am beyond thrilled I got to trial both vests.  I think both work really well and both would be effective. However, I really lean personally towards AffloVest in particular. Each one ...

Coming home from the hospital takes a balance..... Wait.... Did I just say home from the hospital??? That's right!  I get to leave Wednesday the 18th, after 8 days in the hospital. It was a logistical thing. I have a super important court date on for "Shoes (our AMAZING foster son) soon." So Doc knew before he admitted me that I would be leaving by that day... So what does this mean for me and my health??? Well, I need to make sure I continue the same treatment schedule I would in the hospital. So 4 sets of nebs a day. 8am, noon, 4pm, 8pm. Which means I finish my course of IVs at home. I will be on IV's at least until 27th (so 1.5 weeks left). I came into the hospital on Tuesday the 10th, but we didn't realize until Friday the 13th that my Psuedomonas is resistant to all of the antibiotic options for IVs except one med. So on the 13th we switched to Avycaz, which is a newer, hard hitting antibiotic that was brought to market less than 3 years ago. We were hoping I...

Typically, I've been very stable as an adult. I'm very lucky for that stability. However, 2018 started out nowhere near where I wanted. I was admitted mid March for a virus. We aren't sure what virus I had (every test came back negative). However, I had a consistent fever over 102 the entire 5 days I was in the hospital. Once I was fever free for 24 hours and I started eating better, they let me return home. I was excited to leave and get back to my everyday life. But, considering now a month later (and re-admitted), I think I should of just done a two week tune-up last month while I was in already. Live and learn. As you know (I'm sure) I have been trying to get my lung function back up to around 55-60%. 60% is my goal and it really is the highest my lung function can get, due to all the permanent scarring. I started Orkambi in October 2016. At that time it was the newest gene-modifier drug on market for CF patients (with my mutations).  After going on Orkambi I droppe...

I'd have to say the fact today is "National Caregiver Day" comes at a perfect time! This month is our CrAzY month for our little guy (our FosterSon, we call "Shoes" online)  . But soooo worth it! Becoming a (Foster)Mom was an amazing experience, I had been waiting years to be a "mom". After Andrew and I got married we were very excited to become a family! I feel like I went through all the same emotions as an expecting mother would. I just took classes and filled out lots of paperwork in the process. I nested even, we bought furniture, set up the rooms, and got everything ready for our first placement. We still have one of the (original) three kiddos that came to live with us in August 2017. He has completely stolen our hearts and the hearts of pretty much everyone in our lives who meets him. So while I'm not his Biological mother and he may not live with me forever, he will forever feel like a son in my heart. I love him no less than a biological ...