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Showing posts from August, 2012

Thankful Thursday

How is it Thursday again already? The week has just flown by. I'm seriously having issues keeping the days straight in my head. Oh college life!

1. Labor day- We have a holiday on Monday. Although I love going to class and keeping to a pretty routine schedule (really, I do), it is great to have a holiday break every once in awhile. Labor day will give me time to catch up with friends, enjoy the first football game (Sic 'em bears), and get my homework/cleaning/laundry finished. It is still warm enough outside to enjoy the summer sun, and maybe I'll even get to read for fun outdoors! That would be amazing :)

2. My church- I am so thankful for the church I go to here in Waco. I cannot even begin to describe how much my faith in Christ has grown over the past year thanks to my church, or how much it has affected my college life. Going to church regularly and being in a small group has profoundly impacted me. My faith is becoming more and more my own, and I can say without a do…

A little unsettling

If you have kept up with CF research in the past couple of months, you know it has taken us on an emotional roller coaster. With the development of Kalydeco, a drug used to counteract the effects of Cystic Fibrosis in patients with a specific mutation, much hope has been bestowed on the CF community. Currently, clinical trials are being done with a combination of medicines to treat the cause of CF in patients with the most common mutation.

Well, the FDA has recently asked Vertex Pharmaceutical Company (the company that makes Kalydeco) to conduct a study to check for possible additional risks to taking the medicine. In a lab study, juvenile rats treated with Kalydeco developed cataracts. Although this problem did not occur in humans during their studies, the FDA is requesting further testing to be done. Right now, it is still recommended that patients using Kalydeco continue with their medical regimen until further data and information is provided. Click on this link to see the story o…

Sophomore Bliss

I have been a failure of a blogger recently. I apologize! It's hard to get into a new rhythm of life after being in a different swing for many months.

Speaking of changes, sophomore year is going to be a big change for me. I am no longer a helpless freshman, new to every single experience that comes my way. I no longer need to leave 45 minutes before my class starts just in case I get lost along the way. I am not second guessing my major or even trying to choose one from among many. I am no longer questioning my ability to be independent and manage CF. It's a liberating feeling to know I navigated freshman year successfully!

But, like I said, this year is also full of changes. This is my first time learning phonetics and the entirely new "alphabet" that goes along with it, which I will use my entire working life. This is my first time living in an apartment with a kitchen, allowing me to cook my own meals. This is the first time I am in a God-given leadership posit…

Thankful Thursday

WOW. This week has been a complete whirlwind. I can hardly believe it's Thursday. I moved back to Baylor last Friday and have been slowly adjusting back to college life. It is crazy how much life can change in just one week.

1. I am thankful for my family for helping me move in. It is a little bit overwhelming, unpacking all your precious belongings into a new space. You want to make everything look perfect, but you don't know what "perfect" will look like. At least, that's how I felt! My family was patient with me, helped me build furniture, and became my "interior decorators". I'm very thankful that they live close enough to help me in this transition.

2. I love almost all my classes. They just seem so interesting! I'm not going to lie, this semester is going to be difficult. But I am so excited to get started. My professors all seem wonderful, and I know that I will learn a lot!

3. My roommate is just so awesome. We are in the same small grou…

Thankful Thursday

This is my last night at home before heading back to college. I have much to be thankful for this Thursday!! I have an amazing family, who will be hard to leave behind and who have been my solid support system and source of great love my entire life. I have many friends that I went to high school with and share many great memories. I have a sweet puppy dog haha :). I have had the opportunity this summer to work a wonderful job that I have absolutely loved. I have doctors that are relatively close in proximity to me, and I appreciate all of their hard work. I have plenty of clothing, food, and shelter. I have the love of God and the salvation He has provided. I am thankful for everything God has given me!

I am also thankful that I love the school I go to and am excited to go back. I have wonderful friends who I can rely on and who I love to talk to. I have a job working with the honors college, helping a professor teach an amazing group of students. Needless to say, I cannot wait to be…

Happy Anniversary

Twenty-five years ago today, my parents stood before God and 400 of their closest family and friends, pledging their love for and commitment to each other always and forever. I am beyond blessed to have these two as my parents. As society has changed and become much more self-centered, my parents have continued to focus on their marriage, their family, and their God. They care for each other immensely and are such a testament to God's design for marriage. They take the vows they made August 15 seriously, no matter what.

My parents' example of love is amazing in and of itself. But they have had an awful lot of challenges in the past twenty-five years--the biggest burden of which is my CF. Most people don't realize what a strain a chronically ill child is on a family, and even more so on a marriage. Many people with this extra issue end up with a broken marriage due to the excessive stress caused by the illness. Being the parent of a chronically ill child is draining-financi…

Scholarship

Hey friends! A couple of months ago, I found out that I was selected as one of the Thriving Undergraduate scholarship recipients for the CF CareForward Scholarship. I am so blessed to receive this honor!

In addition to a smaller scholarship, one Thriving Undergraduate student and one Thriving Graduate student will be selected to receive a total of $20,000 to be used towards receiving a college education. The students in the running for the larger scholarship are voted on by the general public. Votes count for 30% of the total points, and the judges' votes count for 70% of the total points.

Needless to say, voting is important!! I would greatly appreciate it if you would take the time to check out the CF CareForward web page, read my essay, see my creative piece, and vote!
You can vote all three of the following ways:
1. Email (one vote per email address).
2. Text (one vote per phone number)
3. Calling (one vote per phone number).
That means you can vote three times. Woo!

After…

Loss of a sweet fighter

Another valiant fighter has lost her battle against Cystic Fibrosis. If you read my post from yesterday, you know that I am in the midst of reading The Spirit of Lo, by Don and Terry Detrich. Lo was born with cystic fibrosis, which rocked the Detrich's world. They have been inspired to raise millions of funds for the foundation, as well as provide support and encouragement for other CF families. Terry and Don have told the world their story, sharing their hurt and heartache as well as the joy found in their daughter with CF, Lo's, spirit of hope and spunk, and their other daughter (no CF), Jane's, willingness to protect her sister and do what's best for her. Through The Spirit of Lo, I have grown to love the Detrich family. Everything they have experienced hits so close to home for me.

Lo had gone through two double lung transplants and a kidney transplant. She was a fighter if there ever was one.

Sadly, Lo died August 11, 2012. She left this world with her infectious …

Finding the gene

"Finding the gene [the CF gene] was the result of enlightened leadership, incredibly dedicated scientists, technology and yes--I smiled, a vast army of creative and committed fundraisers. Terry and I, our family and friends could be proud of the fact that we had played a part in the search through six billion base pairs that make up our genes to find the one that caused cystic fibrosis. It had taken in excess of $60 million but we had done it. We had helped raise the funds that had enabled researchers to identify this single elusive piece of DNA--250,000 base pairs long. The scientists, fueled on by All Sports Balls and other similar events around the United States, had discovered that three missing base pairs caused the gene to create a defective protein that resulted in cystic fibrosis. Together we had found the three in six billion"(emphasis mine) --Don Detrich in The Spirit of Lo

I honestly can't imagine the rush of hope people affected by cystic fibrosis felt when F…

Thankful Thursday

1. Paw-Paw's surgery went well, and he is out of the hospital! The hospital is just not a restful place (for instance, they made him get up and walk around in the middle of the night because it had been 8 hours post surgery). Being at home will be much more restful and peaceful for both him and Grammy than being inpatient.

2. Shopping with Grammy- While we were in Dallas, my sister, mom and I went shopping with Grammy. It's kind of a tradition that we go back to school shopping in August as a fun outing. I can remember countless occasions where we would meet Grammy at the outlet mall and browse the many shops. In Dallas, we got to shop and explore the area. I'm thankful for Grammy's willingness to spend time with us.

3. Bible study- This past summer, I have had the joy of attending a local college Bible study. I had never been to this church before, so going regularly to the study was definitely a step out of my comfort zone. However, I am so glad I took that step! We …

Wednesday request

My grandparents mean the world to me. I love all of them so much! The grandparent-grandchild relationship really is special, unlike any other relationship on earth. I love the wisdom my grandparents have and the many stories they tell me from "the good old days." I could look for hours through their old picture books and yearbooks. I find their lives so fascinating! Not only that, I have seen examples of their love for me and for their children countless times over the years. I am so grateful for their presence in my life.

Well, my Paw-Paw (my mom's dad) is having surgery today. He is going to be in the hospital for a couple days, and then the process of recovery begins. My whole family would appreciate your prayers for Paw-Paw, as well as for Grammy (my mom's mom) as she acts as caregiver until he is feeling better. I ask you to pray for a successful surgery and a speedy recovery. As I said before, I love Paw-Paw so much and want him to be feeling better as quickly …

Let me entertain you

Sometimes, you just have to laugh. It's much easier than getting uptight and upset about life!

On Thursday, my sister and I went to get pedicures before my cousin's wedding and the beginning of school. I have been on IV antibiotics since the sinus surgery to fight against any bacteria that might have been stirred up in the surgery. It just so happened that we went to get pedicures in the middle of an IV dose. I walked in to the building with my ball of medicine in one hand and my bag full of gloves, alcohol squares, and flushes in the other. I'm so used to my port sticking out of my clothing attached to tubing by now, I forget how strange I look to people who are relatively healthy and have never seen IV antibiotics administered at home through a port. When Katie and I sat down in the comfy pedicure chairs, the women kept talking very quickly in a language I couldn't understand and staring at me. Finally, one of the women asked me what "that thing" was, to wh…

Thankful Thursday

1. My parents have sacrificed so much to provide for my family. My sister, mom and I went shopping for apartment stuff recently, and I am blown away by the cost of living. It costs so much, just for basic necessities! I am so grateful that my parents want to help my sister and me as we slowly transition to independence. For what my parents could, they cleaned out their cabinets and gave us useful kitchen tools and platters. For other objects, they willingly helped my sister and me sort through the many shelves in stores and pick out the most useful products needed for apartment life. I cant imagine trying to sort through everything without them!

2. Air conditioning- It is incredibly hot outside, in case you haven't noticed. I am so thankful for air conditioning to keep buildings and houses cool and comfortable. Picturing life in Texas without this simple luxury is next to impossible. There are many hot summer nights without even a wisp of a breeze. Without AC or fans, the heat wou…

The Best

I went to the gym today for the first time in two very long weeks. It felt glorious. :) My muscles were quite appreciative for the bike ride and walking I gave them. Even though my speed was much slower than usual, the familiar burn my muscles often feel after a good working out still felt wonderful and gave me a burst of energy.

Okay, so technically, I'm still not supposed to be doing any aerobic activity. But you can't blame a girl for wanting to get up off her butt and move around a little bit, can you?? As I've said before, I don't do the whole, "lay down, relax, and watch TV" thing very well. I get antsy with boredom and anticipation. Would you believe I used to get chastised for not sitting still? Hard to imagine, I know. My main comfort these past two weeks has been that I've been able to read loads of books. Although my body has been unable to exercise, I have kept my mind plenty busy, reading, thinking, and challenging myself. However, it sure i…