Friday, April 25, 2014

College, Health, and Bands

Being a mom is a beautiful thing! It is synonymous with the most joyous of joys. It is precious, and should always be treated as such. It can bring happiness, heartache, and worries. Correction: it WILL bring those things.

Watching my daughter grow up has been such a gift. I am beyond blessed to have gotten the chance to have my own child, unlike so many with Cystic Fibrosis, and to still be here with her, watching her transition into young adulthood 18 years later.

Her time as a high school student is coming to an end soon. She will be moving on in life to the next big step: college. I will be an empty-nester. I will be heartbroken, but I will be joyful that she is transforming into the person she is meant to be, the person God wants her to be.

I can already feel her independence... see it everyday, in almost every way (no, I'm not trying to write a poem). She is pulling away like children are supposed to at the age of 18. She doesn't need me in ways that she used to need me. She will always need her mom though, and I will be here for her in every way that I can be. Sometimes I just want to hug her and never let her go, but even during those times, I'm eager to see where she goes in life and where her purpose lies.

Casey will be attending Duke University starting this fall. I'm beyond proud of all that she has accomplished to be able to attend such a prestigious university, and I know she will continue to do great things during these next four years and beyond. We recently went to visit Duke during Blue Devil Days, a two-day event that shows prospective students what Duke University is all about. It was very informative, and I thoroughly enjoyed visiting the university instead of the medical center or hospital. What a nice change!

Here are some photos from the trip:

My sister had a dinner party for Casey and her boyfriend Alex. Alex is going to ECU, so we obviously had a theme that included both Duke and ECU.

Now, an update on my health:

I had a visit with my lung transplant team this past Monday. My lung function has increased since my last visit because of some antibiotics I was given for my sinuses. These pesky sinuses drain into my beautiful lobes and they aren't happy about that. I'm extremely grateful that it's not progressive chronic rejection. My pulmonologist will just keep putting me on antibiotics when my sinuses flare up, which is about 4 or 5 times a year. 

My kidney function is what's concerning right now. I'm in acute renal failure with a creatinine of 2.9. I'm drinking water like crazy to try and bring that number down. I have an appointment with my transplant nephrologist next week to see what the next step will be in all of this. Hopefully, my number will be better, and we won't have to do anything at this point. I'm currently on Cipro for a UTI, and that causes nausea and vomiting, which further dehydrates me, so I'm trying to drink over 2 liters of water a day. That's a hard thing to do when you aren't thirsty. I read an article years ago that said most people with CF walk around dehydrated all of the time, because we don't feel thirst like healthy people do. I do sometimes feel like I'm drowning having to drink this much! I'll do it though! My kidney is a precious gift from my mom, and I don't want it failing on me. 

I feel like I never have anything exciting to say about Jason, but he enjoys his job, loves me and Casey, and is doing well. Sometimes no news, is good news! :) 

Lastly, I'm super excited about this coming June. I get to mark two things off of my bucket list. One, of course, is to watch my daughter graduate high school. I'll be sending a picture of my daughter and me to my old CF pulmonologist in Charlotte who was the one who referred me to Duke for transplant. I remember asking him if he thought I would live to see my daughter graduate high school, and he said yes. Casey was five years old at the time.

The second thing that I (kinda) get to mark off of my bucket list is meeting Shaun White. Ok, I don't really get to MEET him, but I will get to see him and his band Bad Things play at The Fillmore in Charlotte. They will be in concert with Phantogram, a band that Shaun's girlfriend Sarah Barthel fronts. Jason and Casey are both hesitant about going with me, but I'll get one of them to go. It's my chance to at least hear Shaun play the guitar, even though I'd rather see him snowboard (not ruling that out as something I'll do in the future). Now, if someone could just hook me up with some backstage passes, I'll be good! 

(yes, that's Shaun White's signature on the Bad Things CD, so I already have his autograph)

Thanks for reading. I'll update again in about three or so years.... kidding! 

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