Monday, September 26, 2011

Festival fun

This weekend, I felt really good and we babysat the boys on Sat. evening. We went to a local Fall Festival. They had a huge tower of hay bales that kids could climb up and then slide down the tubes. Kayden loved it and did it over and over.
He is all the way at the top, ready to slide down on the right...

So much fun!

Perrin tried it once with Grandpa and said "Yuck!" and that was it for him...

There were also lots of animals there...a zebra, camel, giraffe, ostriches, parrots, turtle, sheep and goats. I took just a few pictures.

Smoochin with Perrin...

A favorite place of the boys was the corn "sandbox". Perrin was a bit tentative at first, then loved it! They especially loved the diggers to sit on and scoop the corn and dump it. Kayden was jumping, so he looks blurry.

Perrin had a hard time sharing this, he thought it was his for the evening! But he did share.

See the kid that is getting buried in the corn?
Kayden's on the digger.

We also hit some other slides too. Grammy even went on it a few times...fun to feel good!!!

Wednesday, September 21, 2011

Piccless

Well, after another month of IVs, the picc line is out and I feel free again! But not so invincible this time. Just free for now. It feels good to know that I won't have to hook up four times a day! And I've decided that I'm done with piccs. My doctors agree with me and we're going for a port. They are making the arrangements and hopefully I'll have it scheduled in the next few weeks. My home health nurse (who is wonderful) was here yesterday to do the discharge stuff and she took all my iv equipment...my bedroom is a lot less cluttered! I was at clinic on Monday and my PFTs are nearly back to my baseline, although I nearly fell out of the pft booth thing doing it! I got my flu shot. I would LOVE to stay off IVs for several months now. But I'm ok just enjoying each day of freedom. And I can't wait to get my arm wet in the tub tonight!

Thursday, September 15, 2011

Elena's ice cream

I'm not generally that much of an ice cream person, except when I'm in Florida at Sweet Berries. I never just buy ice cream at the grocery store. However, there is Graeters Elena's Blueberry Pie ice cream that is just over the top in my opinion!

It's made in Cincinnati and the flavor was created in memory of a little girl, Elena Desserich, who died from a DIPG brain tumor in 2009, when she was in Kindergarten. I had followed her father's blog at the time and it was just a very inspiring story! There is a book out about her now called Notes Left Behind. Her parents started The Cure Starts Now Foundation to help cure pediatric cancer and a portion of the proceeds from Elena's blueberry ice cream go to cancer research.

While Graeters has lots of good flavors (including raspberry chocolate), this one is my favorite. I love blueberries and this has pieces of crunchy crust mixed in almost every bite. I just discovered that this is at a local store, Rodhes, which may or may not be a good thing. They've had other flavors already, but not Elena's. And I figured that right now, it can be my comfort food of choice. It's a sickness really... It's very expensive...but I'm helping with cancer research, right? I could so sit down and eat the whole thing, no problem, but I'm trying to make it last for three days. Can I do it? Try it, you'll like it! Elena was a beautiful little girl that I didn't even know, but I think of her family a lot.

Tuesday, September 13, 2011

Catching up

I haven't posted in a long while, mostly because I've been kind of on the grumpy side. But I'm over it. I'm ok. When I last posted, I was in the blueberry season, finishing up a month of IV's and getting ready for vacation in FLA. We left on Aug. 6 and were to fly back the 22nd. I felt great...a little on the invincible side actually...the IV's were out, PFTs were up and I was going to have a great time! Well, the first week did go great. My kids were there (not in the same place tho), but we were all together a lot and had a nice time. The second week was going to be just us two and yeah, I got sick. I couldn't believe it, my chest felt terrible, I was achy and tired. I finally did call the cf center and they called in a prednisone burst (yuck) and made an appointment for the day after we got back. So we flew home the 22nd (got home late) and we went to clinic the next morning. And they said I need to do home IV's again. My pfts had dropped quite a bit in just a short time and lungs sounded not so good, so they decided to be aggressive. I was not happy...It had only been barely two weeks from the time I got off them till I got sick again. And pseudomonas were back playing havoc with my lungs. So we waited and they were able to put in my picc line at the hospital that day and I'm just starting my 4th week again on levaquin and ceftazadime. I'm on oral doxy and bactrim for steno maltiphilia for two more months, azithromycin daily all the time. I have weekly appointments when I'm on IV's...yesterday was one of them. My pfts have gone up from 3 weeks ago, but yesterday were down a couple of points and I was really wheezy. It was decided to do the IV's for another week along with another prednisone burst for 5 days and a predisone nebulized med. After I'm off IV's, they are planning to put me on Cayston, a pretty new nebulized med. I guess I've learned that with this disease, you can work hard to be compliant with all the treatments and you do everything you're supposed to, you really have no control. You can be feeling really great one day and crappy the next. As soon as you think you are steady and things are under control, it can change. You might even have someone say you "look good" or you "sound good" when you're actually feeling yucky. It's just weird how it works. I've just had an extra rough time since January and I just can hope and pray it doesn't stay like this...I'm working to get my lung function back to my baseline...which sometimes happens after I'm done with IVs. One bit of really good news is that my creatinine level has been back in the normal range, which was awesome to hear! I've learned to make the most of each day and it truly is a gift. I'm prioritizing what I can get done...which is sometimes not very much! I'm enjoying my family, I'm resting, I'm slowing down. I have lots of hope but I also continue processing reality. Most of all, I'm trusting God, who is really the one in control when I feel out of control! And that's the bottom line for me.