Monday, February 28, 2011


Just yesterday we still had quite a bit of snow on the ground from the last weeks two storms. Then it warmed up and last evening it started raining and raining. All night it thundered, rained, even hail. At 6:00 this morning the electric went off for about three hours. There was a two hour school delay. The west end of the county was worse, school was closed there. All this snow melted and turned into some pretty major flooding!

This is a picture that was taken just down the road from where Warren works. There is a Pizza Hut on the left and gas station on the right. Obviously, the road is were several in the area.

This is a bank right there too, and you can see part of WalMart on the right. And yes, a girl had to be rescued from the car. As for me, I stayed safely in my home all day in my pajamas. It was a good day for a book!

Friday, February 25, 2011

Finally, a Better Week!

One evening when Jeremy's family was here, W and Kayden were in the sitting room for awhile and then Kayden came out with this hat on! They had been taping paper together and making paper hats, boats and planes. He was so into soon a boat was sailing on our floor and planes were flying. Perrin was not at all interested in any of it, but Kayden had a blast.

Last Saturday morning (Feb. 19), I went to a dad's. This was pretty much my first "social" event other than doctor appointments since Jan. 2. It was a small wedding... kids, grandkids and great grandkids. Sue was always one of my mom's very best friends and they were first cousins. Her husband died nine years ago. She and Dad both love music and play different instruments...guitar, mandolin, harmonica, bass fiddle...they both have been playing in a group that gets together every so often. So...welcome to our crazy/wild/but fun family, Sue!!

This was the cake, it was so pretty! And if you're from around here, it's a Litty's cake, so it tasted wonderful too! We all ate at The Smokehouse and the food was good, especially the prime rib we had...I've been obsessing over it ALL week (I know, it's the prednisone).

Kayden was trying to act shy here...and the other one is hiding down farther.

All of the grandchildren had a rose to give to Sue. Well, Kayden asked for one to give to me too, it was cute.

The tables at the restaurant were decorated so beautifully. That's Perrin beyond the centerpiece.

This is the table that dad and Sue were sitting at and I forgot to take a picture of it from the front, especially the candle/flower centerpiece. Shoot, I should've. Duh, and of them sitting there.

This last week also brought some more snow, a storm on Monday, where we got 6-8 inches and then another one early Friday morning, starting with sleet, then several more inches of snow. Schools were closed Tuesday and Friday.

My little potting shed.

I feel like this past week, I have started emerging into a functional person again. And I didn't have to make one trip to Akron for an appointment! The prednisone has helped give me some energy again. Of course, the higher dose has definately caused a lot of sleepless nights, I'm hungry and feel very "intense". But I guess it's a trade off, I'm sooooo ready to feel good again! I'm still not at my "normal", but lots better! I'm also still doing weekly blood draws to keep check on my creatinine level. The last one showed that while it is still too high, it did drop a smidgen. I did another draw that I will probably hear the results from tomorrow. Hoping it keeps dropping! I do have an appointment scheduled with a kidney specialist in a few weeks. I have also been scheduled with an immunologist at the Cleveland Clinic in April. All in was a pretty good week. It's nice to feel like doing some things around the house again! I'm actually excited to just do simple things like getting groceries again, and babysitting my little boys sometimes. And it was great to go to Sunday School and church today too! I'm tapering on the prednisone and just hope I don't crash again when I go off. And now, I'm going to go see what I can find to EAT! It's a sickness...If only I had some of that prime rib.....

Wednesday, February 16, 2011

The Good, Bad and the Ugly

The good...
I am not in the hospital! My PICC line was taken out at my Monday appointment! It did however want to stay with me awhile longer and took heat pack time and finally a PICC team nurse to get it out. I had a lovely bath last night and thoroughly enjoyed immersing my whole arm in the water. It had been 6 weeks since I could get my arm wet, so lovely, lovely...The other good thing is my littles were here awhile yesterday and I had great fun reading books to them and we all laid on the floor playing with the train set. I was hugged, kissed and loved on...

The bad...
My PFT's at my Mon. appointment showed that my lung function has not improved one little smidgen, after all this time. It is down from where it was when this all started on Jan. 2. I still have very little energy and still short of breath, although that is better than it was. My lungs were still wheezy all over. My creatinine level has been elevated, which is one reason for no hospital and continued IV's...they don't want to see me have kidney problems, which can be caused by the one IV I was on. They did another blood draw to check. I also had a hearing test done at my ENT last week and the tobramycin has done some damage to my hearing. It's just frustrating, because I'm having problems with side effects and it didn't really help my lungs a whole lot! I'm now on a higher dose of prednisone...60mg. They are hoping that this will help the lungs. I really really hate being on higher doses of this! They are also going to send me to Cleveland Clinic to an immunologist to really work on the low t cell thing I have. Yesterday, my NP called and said my creatinine level was elevated even more and they scheduled a kidney ultrasound for today, so I did that. They are going to send me to a nephrologist (kidney specialist) too, they are working on scheduling that. I am used to doing IV's and bouncing back and being good to go for awhile...this time, it's not working like that! I think between the more mild CF and whatever the t cell thing is, my doctors are puzzled. I AM a puzzle. Or shall we say special...For sure unique. Anyways, that's pretty much it with the bad.

The ugly...
I just threw that in, sounded like it went together. Is that the name of a movie? Although I could for sure say it has been my hair and make up... I haven't really cared much about either! Oh well...

Wednesday, February 9, 2011

I'm enjoying...

...these beautiful flowers sent from my Sunday School class!

...seeing the blue skies against the snow., love, love it! two little doggie companions.

...having my littles here yesterday for awhile.

...Francine River books. new cellphone (my old one accidentally fell in with my nebulizer cups and I boiled/sterilized it with them)! I hate to admit it, but I really did that!

... Valentine cookies Brenda baked for me on Monday.

...cheese Pringles, I've been hungry for them and hubby is keeping me supplied.

...Coblentz chocolates from Gail (I AM eating healthy stuff too, really).

...clean hair.

...not being so short of breath.

...a break from doing IV's.

Friday, February 4, 2011


This was not a wonderful week in my life! First of all, I got the stomach flu on Tuesday and couldn't keep anything down, by Wednesday evening it was going lots better. We got an ice storm Tuesday and our electric went out Tues. evening. Thankfully, we do have a generator! Thursday afternoon, I had an appointment at Akron. I was hoping to get my PICC pulled. But my pft's dropped even lower than last week...FEV1 was 39% and .94 L...I think this is the lowest I've ever been. I was running a low grade fever and sounded wheezy pretty much all over my lungs. It was decided that I keep the PICC, but take a break from the IV's...they usually don't have peeps doing them longer than a month without a break. So I'm getting a 10 day break, I just have to flush it once a day. I'm also starting prednisone for 10 days...40 mg for five days, then tapering. When I go back on the 14th, if my pft's are back up and I'm feeling good, then they'll pull the PICC...if not, then it's more IV's... in the hospital this time. They did blood work and called us about it on the way home saying my potassium was low (probably from throwing up so much) and my creatinine level was still somewhat high. I just feel like I've gone backwards with this round of IV's instead of forwards and yes, I'm kind of a little discouraged. I usually choose to be positive, but for right now, I'm bummed.