A Big StepRecently I did something with my kids for the first time that previously, I didn’t think would be possible. I took them both, by myself, to eat inside at Chick-Fil-A...Reactions0reactionsComments0 comments
Preparing for TrikaftaWith the FDA approval of Trikafta for kids 2-5 years old, our daughter will be starting the medication earlier than expected. She turns six in July so we were already...Reactions0reactionsComments2 comments
Dealing with typical illnesses with my CF-erA few months ago, we went on a family vacation to the beach. Because it was early April, I figured the typical winter cold and flu illnesses were no longer...Reactions0reactionsComments0 comments
A Letter To A New CF MomDear New CF Mom, I noticed you and your child today at Great Strides. Your newborn was wearing the same purple CF Fighter shirt my daughter was wearing. So many...Reactions0reactionsComments0 comments
A Happy Ending: My IVF JourneyIn late March 2020, I discovered two pieces of bad news. The initial transfer did not result in a pregnancy. I felt extremely disappointed and frustrated. There was so much happening...Reactions0reactionsComments0 comments
Not Enough Hours in the DayMornings are usually the most hectic time in our household. On top of getting ourselves up and ready for work, we also help the girls get dressed, fed, washed up...Reactions0reactionsComments0 comments
Almost to the End: An IVF JourneyHere we are! We’ve arrived at the final stages of my IVF journey. As mentioned in my previous articles outlining our experience, the main reason we were doing IVF was...Reactions0reactionsComments0 comments
Off to KindergartenWe are officially one month into kindergarten, and so far, we have had only positive experiences in Margo’s transition. She went from pre-K on a Friday to kindergarten on a...Reactions0reactionsComments0 comments
Individualized Health Plan: Medication and FoodIn my previous article, I detailed Margo’s Individualized Health Plan (IHP) and our initial meeting with the school nurse. We left the meeting so energized and felt completely comfortable that...Reactions0reactionsComments0 comments
Creating A CF Individualized Health Plan (IHP)For the next step in our prep for Margo to start kindergarten, my husband and I met with the school nurse. We were both looking forward to this meeting as...Reactions0reactionsComments0 comments
Answering the Hard QuestionsAs Margo has grown and become more aware that her cystic fibrosis (CF) is something that makes her different, she has started asking more difficult questions. Some of these questions...Reactions0reactionsComments0 comments
The Middle: An IVF JourneyIn this series, I am detailing my experience with IVF and genetic testing. You can visit the first installment here! This was the most critical piece of IVF for us...Reactions0reactionsComments0 comments
The Beginning: An IVF JourneySince I became a Community Advocate, I have wanted to write about my experience with IVF. However, I’ve put it off because of a few reasons. 1) This entire process...Reactions0reactionsComments2 comments
Ready for TakeoffOur family is taking a trip in a couple weeks to visit family. This is an especially meaningful trip for us as it is the first time to travel home...Reactions0reactionsComments0 comments
First Child-Free VacationMargo was born almost five years ago, and in that time, my husband and I have only spent a handful of nights away from her. She has spent the night...Reactions0reactionsComments0 comments
CF and KindergartenOur daughter, Margo, will be starting kindergarten in the fall. On one hand, this makes complete sense to me, and on the other, I’m in complete disbelief. How is she...Reactions0reactionsComments0 comments
Navigating a Pandemic with Kids Under 5Navigating the pandemic with two kids under five is no joke. I feel like I’m in a game of dodgeball and am just ducking and pivoting to narrowly escape the...Reactions0reactionsComments0 comments
A Day in a CF Patient's Life: Clinic VisitMy daughter, Margo, recently had her quarterly CF clinic appointment, so I am going to take you through our typical routine. One thing I’ve found in talking with other CF...Reactions0reactionsComments0 comments
The Best Response It is always interesting to me how people react when they learn my daughter has cystic fibrosis. After more than 4 years, I still can’t gauge what kind of response...Reactions0reactionsComments0 comments
The Constant Spiral of Caretaker GuiltOne feeling I was not prepared for when I became a CF caregiver was guilt. Few things can send me spiraling quicker than a perceived sense of guilt for something...Reactions0reactionsComments1 comments