Monday, March 14, 2016

February CF Clinic

Beings the calendar reads mid March, I'm a bit behind! None-the-less, I haven't updated on Olivia's health in awhile so figured I should do just that. Olivia has been in and out of doctor offices so often as of late with the added appointments needed for the research study she is in so it seems like it's been a second home to us of sorts. The research study is going well, the worst of the long and grueling days are now behind us so from here on out it should be smoother sailing in regards to that, with a bit longer duration between visits.

In February, Olivia had a return visit to our regular CF Clinic. The appointment was short and all in all went fairly well. As is the norm at her routine February-ish appointments, she's always in a bit of a slump. Having been trudging through the winter months and all the sicknesses that come with it, her weight gain is always minimal to non-existent. T'was the case again this year. Her weight was down from November and she did grow taller so her BMI was down below the 50th percentile for the first time since May of 2015. Carlye wasn't too worried and said to keep doing what we are doing. I of course, have since tried to up her nightly feeding rate so that her intake is increased to get as much of her nightly feed in her as possible. With the changes that come with school and her lack of eating much at all during lunch, along with the illnesses she's picked up, Jeff and I were actually surprised her weight hadn't dropped more than it did. None-the-less, as weight has been Olivia's biggest struggle in terms of her CF, we need to try to get on top of it and have her gain rather than lose. We've taken her off of the periactin she uses for appetite stimulant as history for her has proven that she gets to a point where she levels off with it and it no longer becomes effective. Thus, we'll give her a good few months off it for awhile and then have to start it back up again to help with her weight gain. No one enjoys seeing the adverse effects it has on her temper and mood, but, we'd rather have a crabby and irritable Olivia than one who's lugging a backpack of formula around during the day to get in the calories she needs and isn't in-taking via mouth. We head back for our next follow-up in May and will re-evaluate then, and hope her weight has picked up.

Her sputum culture thankfully, reported normal flora and a light growth of staph so no nasty havoc-wreaking bacteria to deal with as of yet. She's getting the hang of her PFT's more and more, especially since she gets plenty of practice with them through her research study, and those were good and indicate her lungs are doing well at this time.

Other than that, Olivia's enjoying life, loving school and really looking forward to spring and summer. She's excited to set up the pool and go swimming. She is going to take on soccer again this spring/summer and she still enjoys her weekly gymnastics class and is always practicing her gymnastic skills at home non-stop it seems.

All in all, a good update, especially given all the havoc she was dealing with a year ago with her blockages, nausea and vomiting. As I reminded Jeff that it was just a year ago on spring break that she was doing a clean out and we were trying to rule out causes of vomiting with her g-tube nightly feed, I'd say this March is a vast improvement over last year. Nice that we finally got a hold on things and she's doing well with her g-tube. . .

and on that note. . .

off to enjoy this dreary day of the kids' spring break with my favorite little monkeys.

Wednesday, March 2, 2016

CF Climb - Rocky Mountain Edition

My mom gave me this magnet to hang on my refrigerator, she said she thought it was perfect for me, it says:

"You can't stop the waves but you can learn how to surf". 

I thought it was pretty neat, metaphorically describing life in general and also that I will learn to actually surf, next time I head to Hawaii!

That's life isn't it? Full of waves. One after the other, rolling in continually, trying to knock you down . . . and they will . . . they have the power to do so, unless that is, you get on top of them, learn to control them and instead of getting sucked under . . . surf. 

The first time I heard, "Your daughter has CF" . . . well, those were some rollers. Huge waves that knocked me down, sucked me under and they kept doing so, for quite some time. And then one day I flipped the switch I suppose. I decided no more. No, I can't change the cards I'm dealt, but I can learn to play them to the best of my ability. And like that magnet reminds me, I know that I am never going to stop the waves that are cf from rolling in, but I can get on top and surf them out rather than get knocked down. 

CF is something. In the course of 6 years, I've learned a lot, changed a lot and seen things unfold before my eyes that I never imagined possible. I never thought we'd have a huge following of supporters, joining us in our fight to cure cf. I never imagined we'd raise $100,000 for the CFF in this short amount of time. I never imagined that a cure would actually turn into a reality. And yet here I am watching and living through these things that I never thought possible.

Yes, CF is something. 

As I've stated before, never, ever, ever would I have chosen cf for my daughter, but, the amounts of amazing that have surfaced because of it, are truly remarkable. 

Take this story for example, we're calling it:

CF Climb - Rocky Mountain Edition:

It's no secret, Polaris has some very amazing, generous, kindhearted and caring employees, some of the best of the best I'd have to say. Jeff has been been fortunate enough to make some very close friends along his journey there, other fellow engineers that are programmed like him, because from the horse's mouth, he tells me "engineers are programmed a bit differently". One of these very good friends Jeff's made through Polaris is Cole. 

After meeting Cole for the first time, I knew right away that he and Jeff were a lot alike and that a lifelong friendship would be formed. Cole has a big heart and as soon as the kids and I met Cole, he became a family friend to all of us. Cole has been doing the CF Climb with us since 2012 and he's raised a lot of money for the CFF during this time. The kids adore him and after our visits together reminisce about Cole for days. So you can imagine how we all felt when Cole moved out of state to Colorado this past summer. We gave him a hard time for up and leaving and we definitely shed a few tears when the time came for him to move away but thanks to technology and return visits to Minnesota we've been able to keep in touch with Cole, which has been great. 

Thus, this year when it came time to sign up for the CF Climb, I shared our team link with Cole as I had in the past. Soon after, I got an email that Cole had signed up as a climbing member of our team. I asked Jeff, knowing that Cole wouldn't be back to MN for that weekend, that he must be doing the climb "virtually". Jeff confirmed that was the case and we both agreed how gracious that was of him. Through email exchanges, I soon found out that Cole was not settling for being a "virtual climber". No, in lieu of climbing to the top of the IDS tower on Saturday, February 13th, Cole and his good friend Amy were instead going to be climbing a . . .

mountain

Never, ever, would Cole and Amy be climbing this mountain on this day in honor of Olivia if it weren't for CF. CF is truly something. For all the ugly that CF can be, there is so much beautiful . . .

As we talked over Cole's mountain climb and how amazing it would be when Olivia saw pictures of it, our wheels started spinning. Cole said he was going to hike to the top of a mountain and at the summit wouldn't it be awesome to hold up a flag? Through our collaboration we came up with a design for a flag, it was shipped off to Colorado and "here lies the rest of the story":

CF CLIMB - ROCKY MOUNTAIN EDITION

Please take a moment to watch the video Cole put together of he and Amy's climb up Mt. Bross in Colorado on Saturday, February 13th, 2016. Maybe watch it twice so you catch every detail about what these two did and the no small feat that it was. 

- Make sure to listen to the wind whipping in the video. 
- Make sure not to miss the elevation that Cole and Amy climbed to. 
- Make sure to look at that flag whipping in the wind, as you wipe tears from your eyes, to really 
  understand to the best we can here in Minnesota, what it is that these 2 tackled, all in honor of
  Olivia.




Here are a few clips I took from Cole's video to make sure they were not missed: 

That's Cole!


Notice how small the IDS tower is in comparison to Mt. Bross.


To the top of that mountain is where those two are headed.


A view from along the way.


14,017 feet - the elevation to which Cole and Amy climbed Mt. Bross.
 In comparison, the IDS tower is 792 feet tall. 

Amy holding the flag through the whipping winds as they reached the top of the mountain.



What a view



A big thank you to our friend Cole and his good friend Amy for tackling this climb in lieu of the CF Climb this year. Your graciousness and determination are forever admired. How many little girls can say that they have a friend that literally climbed a mountain for them? Super awesome Cole & Amy! Cheers with a Hamm's of course, to you!

When I showed Olivia the video, she got pretty shy of course and said "wow"! I think on a 6 year old level it was emotional or maybe she was playing off my emotions to it, but either way, when it was finished, she looked at me as I was recording her and said, "Where is Cole? I miss him". You know that their climb definitely made an impact on her. She was pretty pumped last night when Jeff and I told her we are planning and hoping to visit Cole in Colorado this summer.