65 Roses For Marcia

Uh Oh, I did it!

2012-01-17T00:00:00.007-05:00

I've joined the wonderful world of Pinterest. What is Pinterest??? An online virtual pinboard that allows you to "pin" ideas and things you like. Pinterest rhymes with interest and you pretty much save/pin your interests. I have looked at several boards for awhile, just sort of dabbling in it a little and I finally did it...I took the plunge and I'm a pinner. And I will admit I'm just a little addicted. Trying not to be obsessed. Back when I was planning my wedding or building our house, I'd find pictures and ideas from magazines and cut them out and file them in folders...same thing, but waaay easier! And online, BP (Before Pinterest) I'd find things I wanted to remember, or a great recipe, but I'd never remember what website I'd find it on, unless I'd remember to write it down or use favorites. Now I can store and organize and therefore come back and find right there on my little boards what I wanted to remember to try. It's pretty awesome! Plus it's fun to follow along to see what other peeps like, or follow ones with your same interests. So I've spent the last few weeks pinning and repinning. There are so many good ideas to find that need to be pinned and tried. I've made a couple of crafts with the boys that I had pinned as well as some very fun scarf ideas to make. Right now, I'm looking for bathroom remodelling ideas, as that is our next project. So I pin as I find ideas. There is also a pin it button you can use if you want to pin a great idea for your home, your hair, your style, kids room, recipe from a blog. Or you can repin other peoples pins. So many ideas out there that are good, it makes me nuts! I love Pinterest and will check it every day...sometimes things just jump right out at me, some I have to really look at. Some I completely skip over. You can organize your boards simply or creatively. But overall, Pinterest is just. plain. fun! And so I've joined the group of pinners........... Help! But I'm not looking back!! It's good I have to do treatments every day, so I don't feel guilty about being online for a couple hours a day! You can check out Pinterest by going here. And you can check out my boards here. I'm still somewhat newish at this and will probably rearrange and add boards, but this is it for now. I might post some projects I've tried from Pinterest ideas as future blog subjects. So do you Pinterest???????? A) Yes, love it...B) No, don't wanna get addicted, or C) hey, I might check it out!

Yay!

2012-01-13T13:46:00.005-05:00

Finally...we got ourselves a little snowstorm! Schools closed.

View from a window out the back. Very snowy, very blustery, drifty, hot chocolately type of day!

Twas Very Merry

2012-01-11T22:15:00.001-05:00

Chestnuts were not roasting and Jack Frost wasn't nipping, but we had a nice Christmas. I always like if it snows for Christmas, but there was nary a flake in sight. We seem to be having a mild OH winter so far. And my son will be ecstatic if it stays that way! Personally, I think we need at least one major snowstorm. Like up to the mailboxes. Back to the subject, here are just a few random snippets of our Christmas. And they are kind of in random order too...

I learned how to fold these napkins the week before Christmas, and I thought it looked like fun, so I got together with Brenda and we each made them for our Christmas dinners. They took a bit of time, but fun to do with a friend. Cute with the little mini m&m "lights". We tried to think what would be good to use as a star on top, but our creativity was gone by then.

My table is set!

Hubs got these cute little candy tractors from someone at work, so I put them by the boys' plates.

And now I'm changing the subject. Earlier in December, we went to hear Tiffany sing in the Messiah. It was a beautiful production...the live orchestra was amazing, as were the singers. I couldn't take a picture during the singing (camera wasn't cooperating), so I just took a pic of her afterwards.

And then refreshments were served.

A random picture of Perrin being silly with his Burger King crown a couple of weeks ago. Cute, so I threw that in.

And now back to more Christmas. We got bikes for the boys...Toy Story for Kayden and Cars 2 for Perrin. Do you think they like them?

This is Warren's sister Cindy. I wrote about her in 2009 when she was in the hospital for months. She has a very rare bone disease. Her bones are dense and brittle. She broke her leg the end of October just by turning in bed. She just had an x-ray and there is no indication of healing so far. Not sure what will happen, she is pretty much confined to a wheel chair for now. The Drs. at Cleveland Clinic are rather stumped. Someone comes and helps her MWF mornings. We brought her to our place for Christmas. I'm sure she would appreciate your prayers!

French silk pie, easy to make and one of my favorite desserts!

I'm not sure what he is doing here with Aila, but I love his curls! This and the rest of the pictures are of our Christmas at my dads. He got a Cars 2 car. For some reason, he calls Cars 2 Car Speed.

Aila got the cutest tea set!

And Kayden got one of his favorite things, dinosaurs! He got a T-rex and a Triceratops. He had a week off from preschool (he was not happy about it), but when he went back he took them along because they were doing letter Dd and it was dinosaur day!

Dad and Sue opening their gift...crackers, wine, cheese and a few gift cards.

We have been playing Bingo the last few years. Whoever wants to play brings a $5 gift. Kyle (in black) is always the caller. Wouldn't be the same without him doing that. Lots of laughing…except we were missing Katelyn's humor.

We played Ninja for fun. I was out pretty quickly the couple of times I played (no surprise there). Too bad Katelyn wasn't here to help play! We missed Katelyn, Shane, Michelle, Keith and Terra. Hoping next year everyone can be there!!

They were just cracking up...it got kinda crazy...

Those were just a few pics of Christmas. It was fun and I'm still feeling well. I got my port flushed the week after Christmas, and it's still just there, not having to be used yet, which is awesome! I haven't even had a dr. appt. in weeks! After 4 months worth of IV's in the last year and nearly a month in the hospital in March, rapidly losing lung function at the time, I'm pretty amazed at how good I've been feeling. And I continue to be very thankful!

Happy New Year!

2012-01-01T23:30:00.002-05:00

Wishing you a happy, healthy and blessed New 2012 Year!

The scent of Christmas

2011-12-20T23:00:00.003-05:00

This is a very easy potpourri to throw together in a bowl. I have my hubby save his orange peels from breakfast for a few days, I just tear the peels into pieces and let them dry overnight. Then I throw in a few tablespoons of whole allspice, whole cloves, whole star anise, a few chopped up (with a hammer) whole nutmegs, several cinnamon sticks and a vanilla bean chopped up. I added a few cranberries to add some color. I put it in a bowl...it looks and smells pretty as a potpourri.

You can also bag up some scoops to give away as a gift. You can buy those cute cellophane bags...this is just a baggie, but it works. My favorite way of using this is to simmer it. You can put a few scoops in a pan of water on the stove or put the pan in the oven at 200 degrees. Keep adding water to the pan. After several days of brewing this, it's best to throw away the used spices, clean up the pan and start over.

I have a small electric thing like a mini crockpot that I use for this. I keep it on my countertop and keep adding water...poor little crock needs some now, I think. I usually try to keep water to the top of it. I have done this for years, I usually start the simmering right after Thanksgiving. Boy, it sure makes my house smell like Christmas!

The halls...

2011-12-16T11:29:00.001-05:00

...are officially decked! At least from the decorating aspect.

Brenda made me this wreath...she makes a lot of them to give away as Christmas gifts. Love it!

This is our tree. The only thing missing is the popcorn garlands, which Kayden brought to my attention right away, but it just didn't happen this year. If you look closely, you'll see the Polar Express train around the tree...more on that later!

This is the manger scene we had at our house when I was growing up. I did buy a new stable a couple of years ago, but all the other pieces are still there. I do have a Fisher Price one in the sitting room by the tree for the boys to play with and act out the nativity story.

I did this little Christmas craft with the boys the other night. We used to make these in school too, when I was teaching. I did it to work on patterns. It's just putting bead things on a pipe cleaner. When we did it, I did two red, two white, etc. on mine. Kayden wanted to do red, white, red, white etc. and he really took his time. This is Perrin's. He started out doing one like mine, then suddenly didn't care...but I think it still looks cute!

I have these gingerbread cookies on all my windows. I made them many years ago, real gingerbread dough, raisins and cinnamon buttons. Then I dipped them in wax and they have been preserved ever since. Except when Kayden was two, he took a bit out of one, thinking it was a cookie of course. He spit it out pretty quickly!

My fireplace. I made the stockings when my kids were little. The little boys stockings are in a different place, hanging on a cupboard. The wreath above the tree has lights on it. I didn't get it in the picture.

This is just a large tin with fresh pine, berries and lights by the fireplace.

I got this idea last weekend when I went on a local Christmas tour of homes. (Thank you Karlene for the idea!) So I came right home and did it. The bottom "snow" is Epsom salts, then cranberries and a candle. I have two holly bushes outside so I keep cutting fresh holly every week. The holly berries look so pretty! The little stars are cinnamon/applesauce ornaments I made and dried. It makes the house smell good and I just sprinkle them around wherever.

These are just some old graters I have and I put a candle under each and they're just on a wooden cutting board. Nice little glow when they're lit in the evening! This table is in the middle of my kitchen.

I have several Christmas cookbooks in a basket on my Hoosier cupboard in the kitchen. This cupboard has a gingerbread/holly theme.

This is the first shelf on the Hoosier.

A closeup of the ginger guys.

The little tree has applesauce/cinnamon ginger boy ornaments that I made with the stars.

This little Who house (you know, the Grinch movie and Whoville) I have on my window shelf over my sink. I bought it at Walmart for a few dollars after Christmas last year. I kept it in the box and wrappings and I think it's adorable. It was like one of those kits you put together, only it was already together. I love how the windows are all recessed.

Obviously jars of candy on my counter...

A small tree in the corner of our dining room table.

And my friend Audrey stopped in with this BLUE poinsetta a couple of days ago. I had never seen blue ones before...so pretty!

This is in our mudroom off of our garage, where we hang our coats and take off our shoes. I made the tree picture several years ago.

This is hanging in our hallway...I made this too when I did the tree.

And now we are back to the Polar Express. It really is a fun thing! We just got it last week. We've read the book and now they want to see the movie.

They've been going a good job sharing...so far. They're having lots of fun with it! I love Christmas! Fa la la la la la la la la

Christmas Adventure

2011-12-10T16:30:00.002-05:00

Last Saturday evening, we took the boys to this local event called Journey to the Inn. The weather wasn't too cold but there was a lot of walking and different stops. I knew it would be tiring for me, but also fun! The first stop was where we had to register...like Mary and Joseph did. At each stop, the people were dressed up like Bible times. Next, we moved on to see King Herod. We went in a room in small groups and we were told to say we are looking for the newborn king. Well, King Herod yelled that HE was the only king...and nobody will replace him! Oh dear...Perrin instantly started crying! It was realistic and scary. I hadn't expected that! We rushed them out of there to calm him down and explain it. Kayden didn't cry, but said his hands turned into claws because he was angry at King Herod. Oh boy, traumatic! Our next stop was the Inn in town. The innkeeper said there is no room, but we can warm ourselves by the fire for a bit, which we did. When we left there, we soon came upon some shepherds, their sheep and angels. On the other side of the road were the wisemen, who showed us their gifts for baby Jesus. Kayden said we'd better hurry up and find him before that bad king does...he aaid we need a shortcut. We ended up driving to the Amish Farm where they were taking "census" of people and there was a star above the large barn. We parked in the parking lot and then got on a horse drawn wagon, which took us to the barn. Inside was a live nativity set, with animals and angels in the loft. There was a choir singing. It was nicely set up and the kids could pet the animals. When we were finished there, we walked a candlelit path to the house, where there were cookies, cinnamon rolls and hot chocolate. Then back to the wagon, car and home. I had read the nativity story to them and we acted it out with our little Fisher Price set when we got home. They got into that and relived the whole King Herod trauma again. All in all, a fun Christmas adventure! I only took a couple of pictures...I forgot I even had my camera along and my memory card was nearly full, so this is all I took.

Cayston

2011-12-07T20:20:00.002-05:00

I just began a new drug 4 days ago called Aztreonam or Cayston. It is a fairly new drug that is inhaled through a special inhaler. It targets the pseudomonas in lungs of cystic fibrosis patients. The little bottle has to be diluted with the liquid stuff...doesn't take long.It is WAY quicker to do the treatment than the TOBI inhaled med was, plus that caused some hearing nerve damage on me, one of the side effects. This takes barely 90 seconds to do. It has to be done three times a day for 28 days, then off 28, then back on, etc. It is only available in four pharmacies in the US and it's very unbelievably expensive! Thank God for good insurance!! It comes with a NUK baby bottle sterilizer and after each use, the mouth piece has to be taken apart, washed and sterilized. So yes, that is much more time consuming than the actual treatment!! I hope this helps keep those pseudos outa my lungs for awhile. I haven't been feeling great the last couple of weeks, although my pft's only dropped a few points. I've been on a prednisone burst of which I'm starting to taper off of now. It has been helping somewhat. I'm hoping to make it through the Christmas season without having to do IV's. I'm getting my port flushed tomorrow also. I'm very thankful to be able to try this new drug, it's been great seeing new things being developed for this disease!

Thankful

2011-11-24T14:22:00.005-05:00

I am gratefully thankful every day for so many things and feel very blessed. Happy Thanksgiving!

Five

2011-11-23T23:30:00.006-05:00

His mommy made him an awesome pirate chest cake!!

Opening some gifts

Playing with his new pirate playmobil.

Kayden had a birthday last week and turned five.Cmon, how in the world did that happen? Seriously. He was a tiny babe at the hospital just yesterday, Cuhrazy!. And now he doesn't want to hold my hand in public anymore because "grandma, I'm big." He has soaked up so much knowledge in these five short years...he's been like a little sponge. He started preschool this fall and goes two full days a week. He told his teacher at orientation that he only wants to learn about dinosaurs and trains. He loves school...he's been known to get up at 5:30 and he'll get his backpack and announce to his sleeping parents that he's ready for preschool...of which, they are less than thrilled! He was excited because his birthday fell on a preschool day and he took cupcakes along for everyone. His friends at school are Paris, Maylee and Jakobi. He loves dinosaurs, trains, pirates, the Cat in the Hat, listening to books and grandmas smoothies. He really doesn't like to take naps or just sleep in general...he would rather be awake and living life...he loves to wrestle with his little brother and daddy. He reminds me in so many ways of his daddy when he was little. I love being his grandma and watching him grow into his own person!

Happy Birthday big guy!

Clinic appointment

2011-11-11T14:00:00.001-05:00

I had an appointment this week on Tuesday to get my newly installed port flushed this week. Gail went along to observe and learn how. It's good I had the appointment, because over the weekend I started the familiar joint and chest aching and I have no energy. I hate it so much because I was feeling really good for nearly two months...and I just wanted it to last forever. Ha, yeah right! But it was sure a nice couple of months! My PFTs were surprising to me, they are holding steady...so they just decided to add oral cipro twice a day. Now I'm on four different oral antibiotics a day! I hope I can tolerate cipro yet, I got nauseous yesterday and awhile today. I ended up taking phenergan to help the nausea. And yes, i did eat before i took anything. I'm also to add two extra breathing treatments a day. I go back in a couple of weeks and im sureI hoping this will kick it!

Gail did end up flushing my port then. She did a very good job except pushed the needle a little bit slow. I had forgotten to put numbing cream on, so it hurt. But didn't last long. The whole thing went well. I'm so glad she's willing to do this for me. They will deliver the flush kit every month. I go back in a couple of weeks and hopefully I will feel better by then and lungs sound better!

The Pie Contest

2011-11-07T22:28:00.017-05:00

The pie contest event that I entered was last Thursday evening at Walnut Creek Cheese, a unique local shop that is huge. a bulk food area, fresh meats, full deli, regular groceries, wonderful ice cream and an area called The Butter Churn, which has all kinds of unique kitchen ware. So they sponsored this free event plus you could enter a pie contest. I have never done that in my life, but I thought it might be fun. The early entrants would get a free Taste of Home Pie cookbook, so I figured at least I'd get that!

They have daily specials, lots of other food to order to dine in for meals and there is a second story area with tables for eating. This picture is taken from there looking down to the main store area on one side. There were rows of chairs set up instead of tables for that evening and there were 300 people registered. I never even thought of taking my camera along, but my sister-in-law did, or I would have no pictures!

We got there pretty early, so this is just a small portion of the pies...there were 52 altogether, I think. There were long tables that kept filling up. See my lemon meringue pie there and just for fun, I made a baby one in a little half pint jar. Just for cute to see how it would turn out. The judging was to be 50% on taste, 25% on looks and 25% on crust.

So at 5:30, they had cooking demonstrations by Lee Ann Miller (a Taste of Home field editor) and Betty, another lady who works at the store. The did a really good job together. We learned how to make a pretty apple stomboli, as well as a meat one, a chocolate toffee "Christian crack(le)"(you had to be there), a very cool upside down pecan apple pie...all using products in the store and Butter Churn.

We learned and we laughed. Plus, they kept giving away lots of door prizes all evening. It was my lucky night or something...I actually won two prizes, a cookbook and a little cheese grater set. And then the pie winners were announced after the demos. The were 3 categories...fruit, nut and pumpkin. I had entered the fruit with the lemon meringue. There were 3 winners in each category. I was the third place winner in my category! I was so not expecting that AT ALL!! My prize was a free year subscription to Taste of Home magazine and my name gets mentioned in it. Three second place and three first place in each. Then a grand prize person out of them. The grand prize person overall will be featured in the magazine, a Bed and Breakfast stay, $100, and a free subscription. She was also the first place winner in the nut category. Her pie was pecan.

Afterwards, we could sample all the foods that that they had shown recipes for or done demonstrations of and others samples throughout the store, as well as a discount to shop. The meatballs and the smoked turkey were awesome! And that's what I'm having for Thanksgiving! I loved the tables decorated for Christmas too...I got some good ideas!.

This is Judy, my wonderful SIL, who entered two yummy pies, a pumpkin cream and dutch apple. She let me use her oven to bake mine, since we had just ordered a new stove/oven and wouldn't you know, they pick that morning to install it. I was a little stressed, so I ran back and forth to her place baking the crust and then going home to make the filling and meringue, then back up there to put it together and bake it again. So thank you Judy!

The 9 winning pies.

Me and my pie, with exhaustion setting in...but it was certainly a fun evening!!

Fall, the boys and pie

2011-10-31T00:56:00.023-04:00

Two beautiful pictures of fall at our house. Our fall has been quite rainy, so when we get a sunny day, we're excited!

These little guys have picked up the ipad moves so quickly, playing some games and reading books, touching and swishing finger across the page. It cracks me up to watch them do this!

We were visited by two little trick or treaters yesterday...Spiderman and a Transformer.

They had fun doing a little trick or treating with some little wizard of oz friends.

I entered a pie contest that is this week and now I'm wondering what I was thinking?! But I guess it'll be fun. I decided on lemon meringue. I just hope it turns out at least semi-good and doesn't fall apart that day!! This was one of my two practice pies I made and we ate!

My port is good...there is a nice little healed up bump there. Next Tuesday I have a clinic appointment and I'll get it flushed for the first time.My nurse friend Gail is going to go along to learn how to do it, it has to be flushed once a month so I don't get clots. I might even try to learn to do it myself, but that doesn't sound too fun right now.

Happy last day of October!

My birthday present/port

2011-10-21T23:47:00.003-04:00

Yeah, that's a lovely view of my neck. Last week on Mon, Oct 10, I went up to Akron General to get a port put in my chest. My doctors had recommended doing this, since I've had to have so many picc lines put in in the last several months. Goodbye picc lines! So now when I need IVs, I will have to just hook up to the port and not have to go through the picc procedure. And yes, the port placement had been scheduled on my birthday. Happy Birthday to me! But I knew that Warren had that day off anyways for Columbus Day and I wanted to do it at a time when I'm feeling pretty well...which I have been, so yeah, we decided to go for it! The CF clinic had said I'd probably be put under general anesthetic for it, which I really didn't want. My little lungs don't do so well with that. I was going to talk them into doing the wonderfully helpful "twilight" sleep. The first nurse who was signing me in said no, she thinks it will be put in with only lidocane, a local anesthetic. I wasn't really excited about just a local either. C'mon, a little sedation please! But the lady who did the surgery did say absolutely yes to the twilight/conscious sedation...thank goodness! It didn't put me to sleep, but I was definately relaxed...and she explained what she was doing through the whole thing. It took about 45 min. to an hour for everything. The thing I hadn't expected was two incisions, a small one in my jugular vein and of course the chest incision to implant the port. More info about a portacath here if you're interested. I was there maybe an hour afterwards, then we could leave. We stopped on the way home to get take out, I was hungry by then! I was pretty sore for a few days, it wasn't terrible tho. I went back this week to get the stitches taken out...they were called "mattress stitches". So now I have my port in and it's healing, hello port! I hope we'll be good together. I just really really hope I don't have to use you for awhile! BTW, I am officially old, which I look at as it being a good thing!! Most people groan as they get older...me, I'm celebrating every year! We did go out to eat at Red Lobster to celebrate a few days before my surgery. Endless shrimp and biscuits, how I love you. You don't even want to know how many I ate, you really don't. But just know, I am capable.

Festival fun

2011-09-26T23:06:00.004-04:00

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!!!

Piccless

2011-09-21T14:28:00.003-04:00

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!

Elena's ice cream

2011-09-15T21:33:00.022-04:00

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.

Catching up

2011-09-13T23:15:00.005-04:00

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.

It's August???

2011-08-03T21:44:00.004-04:00

Well, my July was pretty much taken up with four IV's a day and my regular treatments plus two extra nebulizings, so I didn't do a whole lot of anything else. All of a sudden, it's August! I got my picc line out yesterday, it pulled right out...just like a long piece of cooked spaghetti! At least this whole IV-ing was uneventful this time and went smoothly, thank goodness! Not one blood clot. And I'm so glad I did the extra 4th week, because I felt it really made a difference! Now I need to start oral Bactrim and Doxycycline because the steno malt bug is back. The really good news that I still can't believe is that when I did PFT's yesterday, my FEV1 was 50% and 1.22 L. I DID IT! In March I was down to 30 and .79L so I am so thankful! Maintaining is the hard part. So now I'm ready to get a few fun things in yet this summer! Vacation is coming up and I cannot wait!

Still chained

2011-07-28T10:04:00.004-04:00

I was hoping that I would be having my picc line pulled when I went in on Tues. but they recommended one more week. The reason was we're going on vacay soon and they want to make sure I'm as good as I can be. So that did make sense. I had my last huge box of meds delivered yesterday...yay!! It has at least gone smoothly this time, no bumps in the road with the picc. My PFT's were up to a whopping 49%, next week I am so going to try to hit 50%. That's my goal. One. More. Point. Most people don't have a clue how hard it is to do PFT's!! On the other hand, I've never had to feel what a chemo treatment is like, or many other things that people go through. I still had some crackles and wheezes, but I don't think it's ever really clear, maybe just less crackly and wheezy. :) So next Tues. I'll go back and it will be pulled out for sure and the celebrating will begin!

To Die for Blueberry Muffins

2011-07-24T21:13:00.007-04:00

Well, I wouldn't exactly risk my life for them, but they are wonderful!! (Blurry picture of them). Kayden helped me whip up a batch on Friday and they are gone already. I keep picking blueberries almost every day...my four little bushes are about done, but my two big ones still have quite a few yet. Here is the recipe for these tasty muffins. (I'm really not turning this into a recipe blog, but I have to share this)! I just love blueberries so much...I wish I could find a superb perfect recipe for blueberry scones. I had some in Canada once that were quite amazing! Back to the muffin recipe...I made six large ones and 24 mini muffins from this batch.

Blueberry Muffin batter:
1 stick of butter, softened
3/4 C sugar
2 eggs
2 C flour
2 t. baking powder
1/2 t. salt
1/2 C milk
1 t. vanilla
1/4 t. lemon zest
2 C blueberries I used fresh, but you can also use frozen.

Preheat oven to 375. In a large bowl, cream butter and sugar. Add eggs, one at a time. Combine flour, baking powder and salt. Add alternately to mixture with milk and vanilla. Fold in blueberries carefully and spoon into muffin tin (about 2/3 full). I didn't use paper liners, I just sprayed tin with Pam. Sprinkle with topping, OR you can just sprinkle with sugar.

Topping:
2 T flour
5 T sugar
1/2 t cinnamon
2 T butter

Bake for 20-25 min. If you do the mini ones, they may be done sooner. Let them cool before getting out of the pan or they will crumble if hot.

I've still been on IV's, another doctor appointment on Tuesday and I'm hoping and hoping they will pull the picc then. I've been on IV's for three weeks. They'll either pull it or I'll be on one more week. They usually give you a break if you've been on them for a month. Last week my lungs were still sounding crackly. Today I felt wheezy. The weather has been so hot and humid, hard to breathe the air. I've been staying inside most of the time, thank goodness for air conditioners! My joints have been hurting so much, I think it might be a side effect of the IV's, or else I'm getting really bad arthritis. Last night was rather miserable, I didn't sleep well because of the joint thing. A "cold" front is moving in, so we should have a couple of days in the high 80's instead of the high 90's. I'm thinking we should move to Arizona where the heat is at least not humid heat. But then again, I've never been there in the summer!

Blueberries!

2011-07-17T13:10:00.000-04:00

Blueberries are one of my favorite summer fruits. This year I am picking a crazy amount of them from two of my bushes that are five years old. I have been getting 1/2 to 1 pound a day. We had to build a fence with netting around it, because otherwise the birds would strip them! (Or the grandkids)! We planted four more bushes last year. We are getting a handful from those, but it takes about five years to really produce. The little boys love them too, I usually save some out each day for them. They are so good fresh, I eat as I pick!

This is what I picked yesterday, probably about a pound...it's a pretty large dish. I decided to try a blueberry crisp...I kind of put a couple of recipes together.

It turned out pretty good, I will be making it again! Here is the recipe if you love blueberries and want to try it...

4 C blueberries

3 T clear jel

3/4 C sugar

1 C water

Cook until thickened.

Add 2 t lemon juice (fresh is best)

Cool.

Topping

1/2 C brown sugar

1/2 C flour

1/2 C oats

4 T butter, softened

1/4 t. soda

1/4 t. baking powder

Combine dry ingredients, rub in butter to make crumbs. Sprinkle crumbs over blueberry filling. Bake at 350 for about 30 min. Serve warm or cooled. Really good with vanilla ice cream!

I am feeling somewhat better, still on IV's...probably for a couple of weeks yet. I have a clinic appointment tomorrow. Clinic in the morning plus an ENT appointment in the afternoon...It will be a long day! And then race back home to get hooked up to my IV in time. But things are going so smoothly this time, no blood clots or bends in the picc line (knock on wood)! I'm just so happy it's been going well. Hoping that in a couple of weeks I'll be all bounced back to my usual self. In the meantime, I'll eating lots of blueberries!

Special package!

2011-07-11T13:15:00.005-04:00

I wasn't able to download pictures for awhile on my blog, but now I can again, so finally posting this. I got a package in the mail a few weeks ago with the return label from Harrisonburg, VA. It was from my cousin Dawn! I love getting packages in the mail and often order free things I find online just because it's fun to get a package, no matter how small! And this was a big box! There was the nicest note in it which said she has been following my blog and when I was so sick in March she started making me a prayer shawl and "as you continue to rest and slow down a bit, this prayer shawl is to wrap up in to remember God's arms wrapped around you as you continue to recover"...Dawn, I'm keeping this in my living room as a tangible reminder to say no or slow down if I need to. (Always has been hard for me to do this). And since I'm on home IV's again, I wrap up in it while I'm IVing or resting. Thank you so much Dawn, not only did I get a special gift in the mail, but it was something with love and prayer intertwined in the stitches!!

Picc or Port?

2011-07-07T23:30:00.001-04:00

I did end up on IV's again...I got a picc line put in yesterday morning and the home nurse came last evening to get me set up with the meds. I have big monster pole again because of the one med...yuck! There was trouble getting my picc in and my arm is really sore. I will see how things go overall, but I'm considering getting a port put in. I had a lot of trouble with clots and tube bending in Jan. and March. I'm doing some research online about a port as my CNP said it might be good to consider it. I'm curious to know pros/cons of having a port by anyone who has had one for any reason. The way things have been going, I'm needing IV's more frequently and I'm not enjoying the picc procedure. Any advice, what is it like having a port compared to a picc??

Blog? What blog???

2011-06-26T22:00:00.006-04:00

Oh yeah, that's right, I DO have a blog. Someone asked why I'm not posting any more. Ummm..I have just been happily living my life...and feeling quite good. I just haven't taken the time to write. I had an my annual 5 hour clinic visit two weeks ago (yes, it was 5 hours) and I got 48% FEV1 and felt good, although my dr. wondered how I got that high of a number with my wheezy sounding lungs. I had told someone not long ago, that I'm scared to say it, but I'm feeling really great! It's scary to say that because the next day it can hit you. Well guess what, it did hit me a few days after clinic....I started with a fever, then the lungs started the familiar achy yucky feeling and I became more short of breath. I was put on 3 oral antibiotics (levaquin, bactrim and doxycycline) plus the azithromycin I take daily...a nice little cocktail of drugs. Plus phenergan to keep from being nauseous. A week later, I'm feeling a little better...but not tremendously better. I have been in close touch with my clinic NP and she said if I'm not better in the next couple of days, I'll probably need to do home IVs. I'm sooooo not ready to do this again! Grrr!! But then I have to remind myself that I had 2 pretty good months and I enjoyed every minute of it!

Here are a few of the things we have been doing the last two months...I've had trouble downloading pictures for some reason, so no pictures. And I know that's more boring...but at least I'm writing something!

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Celebrated Perrin's 3rd birthday on May 10! I can't believe how they're growing up!

Warren and I took Kayden and Perrin to ride the train at Lodi because Perrin was totally potty trained...and we needed to celebrate this event!!

Downsized our gardening area. Tore down the fence in front of our house and burned it (the boys loved the burn pile part)! Now that I'm over it, I am glad we did it. I gave away a lot of perennials and also transplanted some, thanks to the help of Ralph and Brenda!

Took Kayden to Bible school at our church. Perrin wasn't old enough yet...he and I just watched the singing and drama part then left.

I had a Cleveland clinic visit again about immune system...it turns out that I'm in the lower normal, but WAIT...I'm actually still in the NORMAL range for something? B cells and T cells. I couldn't even believe it! So he thinks it got thrown out of whack because of so much prednisone. Which means, thankfully, that I don't need to do the gamma globulin (hizentra) treatments. Yipee!!

A lot of basement drama...our basement had some major water damage and our son's basement had backup sewer damage. We are both still having work being done on that. It involved some re-drywalling and painting in ours and same in theirs...plus some new flooring. Hopefully both our basements will be done in a few weeks.

I made a couple of strawberry pies and froze a bunch for future smoothies for me and the little guys. I also tried a new strawberry pretzel dessert recipe. Yum!

Tried to somewhat help dad clean out his house, since he had moved.

Made a mandatory rule for myself...every afternoon I take an hour to rest...don't usually sleep...just rest. Probably a good rule for anyone!

I didn't do anything really earth shattering, but just being able to feel good and do the little mundane things in life makes me happy! I hope and pray that I snap out of this latest setback quickly so I can get on with those little things....

P.S. Today was our 35th wedding anniversary! I had found the tape of our wedding at my dad's house when we were clearing things out and we watched it tonight...We had only seen it once and I thought we had lost it, so it was lots of fun to watch! We looked so young and happy! And thankfully, now we're old (and still pretty happy) ;>)

MIA

2011-05-10T14:30:00.004-04:00

Yes, I've been totally missing in action, or I could say Marcia's In Action...I'm feeling good these days, I have officially bounced back! While I was in the hospital, I really couldn't envision that I would ever get "back" again, pft's were falling so quickly. The transplant word was discussed, it was difficult to breathe, just felt like everything was going downhill pretty fast. It took a LONG time to bounce back this time, but a couple of weeks ago, I realized I'm back at "my normal for me". I'm so amazed. I truly am! The only thing that's difficult for me is not overdoing it. When I feel good, I tend to go top speed (I'm saying top speed for me, not comparing me to a healthy person). Then I get overtired and my chest hurts and I'm mad at myself. So I'm trying...Also trying to do some walking when the weather is nice and some other exercises at home. Going up stairs are still hard, but GOOD exercise. I basically hate stairs...

I started writing a blog post a few weeks ago, but never got around to posting it, so instead of erasing it, I will post. Just keep in mind that I wrote it right before Easter. Sorry Barb, Diane and Judy for not keeping up the blog very well, thanks for checking in and being concerned. And Diane, it was good to see you guys again this weekend! Thanks for taking time to stop in! OK, so here is my earlier post written toward the end of April...

Blogging break... I have pretty much just really been focusing on getting healthier, doing the exercises I'm supposed to be doing, walking on nice days (hasn't happened too often, we've had so much rain). I'm feeling a lot stronger and am not NEARLY as out of breath as I had been. I can now go (slowly) up our stairs all at once, instead of stopping at every 3. I've been pacing myself with what I've been doing, stopping if I get tired...but overall, I'm coming back!! I still haven't been "out" much other than going to Jeremy's (3 minutes away). Yesterday I went and joined in on the fun with helping the boys color Easter eggs. While Steph was getting things ready, Kayden (4) said, "I remember doing this when I was a small boy." I've been working on making Resurrection Eggs for the boys and want to do that with them this weekend.

Changes...I love to work outside, but while I was in the hospital, we decided I really need to cut back. So Warren took out our fence in front of the house, we had flower beds on both sides of the fence, we're just going to plant grass up to the sidewalk. We are also getting rid of the herb garden. I will just plant a few herbs in a pot, because I do like to go snip while cooking. It makes me very sad to get rid of stuff, but I know I can't do all that work anymore. We still have plenty of other flowers and a retaining wall with bushes and flowers.

Cleveland Clinic...Monday we had a long long long day. I had two appointments there, one with an immunologist and one with a pulmonologist. Both were very interesting appointments! The immunologist did a test to see how well my immune system is working. The nurse injected some tetanus and yeast just under the skin in my arm. We had to "read" the results, do some drawings on my arm, hard to explain. We had to send in the results. He also wants me to redo the test in June too, because my immune system could be very weakened from all the prednisone I've had to take all winter. So I won't know for awhile if I'll need gamma globulin treatments or not.

The pulmonologist is the one who diagnosed me a few years ago, so we knew him. He had also done a bronchoscopy on me at least a year ago. We had stopped at Akron to get my lung CT scan, which he went over with us in a couple different ways...it was so interesting! He would zoom in slowly through my skin, then we'd see muscles, then heart and then into the lungs. He showed us the areas of bronchiectasis...the tubes were dilated and lots had little pockets to trap mucus...that's why it's hard to get out! He spent a long time with us, about 90 minutes! Great guy! I had been on azithromycin for a couple of years every MWF...I was taken off several months ago, then put on it again in the hospital. He works with transplant patients and they have found great results with daily azithromycin, so he said why not try that with me? So I'm adding that daily.

Now for the OMG part...I had to do PFTs of course and I had major anxiety doing them in the hospital, because they kept falling every time! I got so nervous again, just thinking about it, but it ended up that they were in the mid 40's!! Oh my gosh, I was pretty amazed and thankful...it had been down at 30% in the hospital, so big improvement! If I can just keep it up...

I think he missed me!

2011-04-07T11:00:00.006-04:00

My sister-in-law took Mickey to be groomed this week. I usually do it myself, but decided I'm not up for it yet and he really needed it. He's cut shorter than I do it, which is OK, I won't have to trim for awhile. But he looks so teeny tiny now, seems like a different little dog!

Such skinny little legs!

I think he's happy I'm home...he's been sort of like a magnet since I've been back.

On the other hand, K told me he thinks I should go back to the hospital (I think he liked those surprises!)

Friends and Jewelry

2011-04-06T11:50:00.003-04:00

Tuesday evening Stephanie, Laura and JoEllen stopped over. Laura brought some homemade oreos (very yummy!) and JoEllen brought a freezer meal. We had a nice time chatting, then started talking about Steph's new jewelry business. We talked her into quick going home to get it and we had lots of fun looking at it and trying stuff on! So here we are modeling jewelry! I missed her first party because I was in the hospital, so it was the first time for me to see it too. I don't wear much jewelry...my ears are pierced and I never wear earrings, it was fun to try them on! Steph showed us different ways to wear some of the pieces, one even as a belt! It looked very cool on her, not so much on me!

And yes, Laura is due in two weeks!

Checking it all out...really nice stuff!

Showcasing a watch and bracelet...her tummy made a nice shelf...Warren was watching the boys, but they wanted to be included here.

I am starting to look a little tired here, (doesn't that necklace look great on JoEllen!) but it was such a fun time and so nice to have a "normal" fun evening for once!!

Quiet and enjoying

2011-04-05T23:00:00.004-04:00

Yes, I've been ignoring my blog...just kind of quietly enjoying being back at home the past few days!! Tiffany came home Fri. (Spring break) and for the weekend and she took my snowmen down...I was ready for that. Jeremy's were over a couple of times too. We even had friends come all the way from VA! Diane was my best friend from third grade through college and we've tried to keep up with email and visits over the years. They have lots of family here. They stopped in Saturday and also Sunday before they left to go back. We all enjoyed catching up in person...thanks so much for coming guys!!

I just threw in this picture of our little Meggie because she is cute!

And some more hospital pictures...these were some of the many crocuses along the pretty path outside of the hospital. A couple of days later, they were covered with 3 inches of snow! It was warm enough to go outside 3 days out of the over 3 weeks of hospital time.

This was one of the dogs from the doggie brigade, that just happened to be there one time when Steph and the boys were there. I was afraid they'd be scared at how big he was...they were OK, just a bit wary. They're just used to my little dogs. These dogs were so clean and well trained!

This is the "monkey" bush picture I was talking about in an earlier blog. Seriously. I wasn't sure how I felt about it! There was another one with a monkey hanging onto it's belly. I wanted to take a picture of the boys with it, but they wouldn't do it, said they're too scary! I don't know, are these monkeys or not?

The boys having fun on the playground right outside the hospital.

I am trying to follow the hospital routine, as far as the nebulizers and the vest (I do miss that percussor though!) I am getting rest, doing the exercises, stretching and breathing techniques they had me do. I am not as short of breath as I was, which is wonderful!! I can do stairs again as long as I go slow. Actually that's pretty good exercise. Today was a pretty good day, my chest didn't ache at all...it's probably the best I've felt in over 3 months! I have had some great meals brought in by family and friends. Gail and Brenda came yesterday and helped me put up Spring decorations...looks so nice! I'm really ready for warm weather, I saw a few snowflakes outside today. I have a nephrology (kidney) appointment on Monday. The following Monday I have two appointments that I was referred to by my doctors. One is a pulmonologist and the other an immunologist. They want to see if they have any other ideas of what to do with me! So 3 new doctors, although I have seen the pulmonologist a few times and he did a bronch on me. Even though I am feeling better, I feel very fragile right now. I am hoping I don't get sick again before the Cleveland appointments. For now, just continuing to enjoy being home...

There's no place like home

2011-03-31T22:44:00.004-04:00

Miracles do happen! Today I did PFT's and the first two tries I got 33% again, then 38% and then 40% and .97 Liters. I knew they were probably going to send me home anyways, since I was feeling better, but we were all wondering why the PFT's didn't match up with the fact that I felt better. I was so elated when I hit 40 and couldn't believe it! Warren had taken off work after 10:00 and was at the hospital by the time I got back from PFT's.Soon after we got back to my room, the picc line was pulled, PT came and went over things I need to continue doing at home, I got my discharge papers and prescriptions and soon we were packed up and ready to go.We stopped to eat at Macaroni Grill, then I fell asleep on the way home. It felt so good to pull in at home and be greeted by my little dogs, who danced and whined with happiness. Everyone was so wonderful at the hospital, honestly it was pretty unbelievable...but it's so good to be home! Now the hard part...not to overdo, which is my tendency. I'm really going to try! I'm so ready to go sleep in my own bed!!

A few pics

2011-03-29T21:48:00.027-04:00

Worked and worked on trying to get some pictures on here and couldn't DO it. I was frustrated and then thought of my good buddy JoEllen, who of course came to the rescue! I emailed her the pictures and she put them on...see how we work as a team? So here are just a few pictures, it's always nice to see pictures instead of boring writing.

This is when we were at the mall on Sunday...my afternoon out! And yes, I know I looked tired...I was! We had gotten smoothies and had just seen the most awesome trampoline on display with sides on It and a basketball hoop. It's all Kaydens been talking about ever since, I'm told. We left soon after to get this tired mama back to bed!

The boys think my bed is ever so cool...whenever they come, we go on rides...up and down, head up, head down, unlock the brakes. I just hope the bed holds up!

We were in a toy room and Kayden was drawing a picture of me...

...as Perrin and I watched.

Mickey's visit was so much fun! He did a little dance and wanted to lick and lick!

Kayden being my doctor...he'd take my temperature and then give me multiple shots.

The boys have loved playing with the Thomas the train set I got for them at the volunteer place.

The Ya-Ya's came one morning last week, and the room got a little bit wild during their visit...so much laughing!

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Yesterday I did have to do PFTs again...I was hoping to get them up atleast a point...instead they dropped 4 points. I even tried 5 times instead of 3 over a period of half an hour, but couldn't get it above 33% and .79 Liters. I was so bummed, I was so sure I would get higher, not lower! I'm not sure what the plan is going to be next. I do feel better, that's why I don't understand this. I'll just maybe go by how I feel and not be dictated by a number...?

Out and about

2011-03-28T22:30:00.000-04:00

Yesterday I had my first excursion into the real world in nearly 3 weeks! It was cold but sunny. It was so much fun to be out of here for awhile and not be hooked up to an IV pole! Yay!!! We drove about 15 minutes to Summit Mall. I was most excited about eating out and we went to PF Changs...a wonderfully yummy dinner of fried rice and shrimp in a sauce on crunchy rice noodles. We shared this and I still had enough to bring back to eat for lunch today. We walked around the mall...Would sit when I got out of breath then walk again. I found a Brookstone store, so sat in the massage chair for awhile...put me in a trance! I got some lounge pants and we got a camera attachment for my iPad! So I downloaded some pictures, but now can't figure out how to put them on here. I guess I'll need to read directions to see what to do. It's different from my home computer.Maybe I can figure something out, but for now, no pics. Jeremy, Steph and the boys met us at the mall too, we sat with them in the food court, walked around awhile with them and then got smoothies. We got back to he hospital around 4:00...it was a nice few hour getaway! Thought about a movie, but I was tired.

I found out today that my hemoglobin is low, due to taking blood from me every day for almost 3 weeks...vampires they are! So now I'm on iron and vitamin c. Creatinine is a bit better because of having IV fluids all the time. Tomorrow I have to do the dreaded PFTs again...hoping and praying it will still go up some more. Today at PT, I rode bike for 8 minutes...even doing some HILLS, but then I was pretty uncoordinated doing some exercises on the big ball...being coordinated has never been a real talent of mine! I did some walking around the hospital again...I so wish that it would be warm enough to walk outside, but it's been pretty cold. I just realized this morning that I still have snowmen up at home! I was feeling too yucky to care before I came here and now it's almost April! Oh well, I'm sure Warren doesn't even think about it, he'd probably leave them up year around and not notice!

Quick update

2011-03-26T23:30:00.001-04:00

My PFTs on Friday did go up 4 more points, so I'm now at 37% and .88 Liters (how much 02 I can take in a deep breath). This is pretty much the same as when I was admitted to the hospital, then they fell that first week. Even though the numbers are the same, I do FEEL better than when I came in. I'm working hard at physical therapy...plus going for walks in the hospital. I'm still hooked up to iv fluids all the time, unless I want to take a walk or go to PT or go to do PFTs. I walked to the cafeteria today at lunch to get my own food and brought it back up to my room...that was a pretty good walk. I will do PFTs again on Tuesday.

I did some stretching activities this afternoon, while I was listening to the Hiland basketball game, playing in the state finals. That passed the time...and we WON! Would have been fun to be there to watch...I'm sure most of the east end of the county was there! Yay Hawks Div. IV state champs!. That hasn't happened since 1992!

I am excited for my pass tomorrow. We are going to Fairlawn to eat and we'll just see how it goes as to how long we stay...maybe a movie?? I'll see how I can function on the "outside" for awhile! It seems really weird to me that March is about over, it feels like it didn't happen...

Still here...

2011-03-24T20:00:00.001-04:00

Ive been here for 15 days. I'm actually surprised that for the most part, it's gone fairly fast. Yesterday was a pretty good day...Steph and my littles came and surprised me...and my sister brought my little Mickey for a visit. He danced all around on my bed, licked and licked and snuggled up. We went outside for a bit...it was a little chilly, but not too bad. I walked Mickey while the boys had fun on the play set. And it's nice to be outside because I don't have to wear a mask. I do when I'm anywhere outside my room. I really wish I could post pictures...I told Warren to get me the adapter thing that I need.

My creatinine level started to creep up a bit again, so I'm back on fluids. Shoot. But whatever it takes to help my kidneys, right? Today at PT, i did stairs, a lot of walking all over the hospital and rode the bike for 10 minutes. I was impressed with myself! I'm feeling stronger. I'm doing PFTs again tomorrow and they need to keep going UP again...even if just a point. The way it sounds is that I'll be here awhile yet...they want to get my PFTs up as high as possible. And I'm OK with that, because I want to feel as good as i can before going home. They are giving me a pass to get out of here for awhile on Sunday. I thought about going home, but not sure it's worth it with the drive. Maybe we'll just go out to a nice restaurant...have a little date. I'm ready to get away for a little, so I'm excited!

And now I'm going to chill and listen to our Hiland boys game in the state semi-finals. I feel like I'm probably one of the few people from our little town that isn't there! Good luck guys!

PFTs

2011-03-23T11:15:00.000-04:00

What is a pulmonary function test (PFTs)? It's a test that measures your lung function. This is how I do it...you sit in a phone booth type enclosure with the door open and you put a clip on your nose...you put your mouth on this big round tube which is hooked to a spirometry machine. You breathe normally one or two breaths and then take as deep a breath as you can and blow it out as forcefully as possible while the lady yells go go go and you blow until you're thinking you might pass out or die. Seriously...you almost see stars! Then you wait till your heart calms down, drink some water, try to relax because you have to do it two more times...they take the best score out of three. How did it go yesterday? Mine had gotten really low, and I managed to get them up 2 points...I was really hoping for more, but on the other hand, I'll take anything that is UP instead of down!!! I will do it again on Friday...hoping for more improvement then. Baby steps...

A little update

2011-03-21T19:53:00.004-04:00

The last couple of days have gone a little better. Im still getting iv fluids around the clock, but I could be set free to go for walks, so it was nice to do that over the weekend. My legs felt really rubbery at first! Today Michael & Lindsay (niece) brought me Macaroni Grill food and then we went for a walk outside...it was such a nice day and SOOO good to be in fresh air! I went for a walk this evening too...it's just harder to walk around the hospital because I have to wear a mask, making it more difficult to breathe. When I'm outside, I don't need one...so much better! Awhile ago, I had a dog visit...it was an enormous goldendoodle named Mickey...it made me miss my tiny Mickey and Meg.

A nice bit of good news is that my creatinine level has come down a little, which means my kidneys are now functioning more like 50% instead of 40. My doctors were happy...they didn't think it would get any better while I was on Ivs, they werent sure it would EVER get any better. So this is huge!

The awful sinus headaches and nausea are gone (PTL! ) and I'm eating again.

My pfts were really down on Friday...I've tried not to stress over it. I will do it again tomorrow afternoon...so if you want something to specifically pray about, that would be it! Even if it would go up a couple of points. My numbers have gone down pretty much every time I've done pfts since the beginning of Jan. I'm way overdue for some better numbers!

I have been taking some pictures, but don't have a camera cord for my iPad. Kayden and Perrin were here a couple of times this weekend and enjoyed the doctor kit...Kayden kept taking my temp and giving me shots. And they jumped up and down when I gave them the Thomas the train fold out set...it's so cute. They had great fun with it!

Conversation by Steph and Kayden on the way here Sunday..
Kayden-"we're going to see grandma, maybe she will have a surprise for us"
Steph-"she doesn't have a surprise for you every time"
Kayden-"oh, but grandma is full of surprises!"

I would LOVE to be surprised with some better pfts tomorrow!

Hospital happenings

2011-03-18T22:12:00.004-04:00

Im still here and have had some not so fun last few days. They took me off the merepenem iv, because they thought that was what was causing the nausea...I'm getting ceftazadine instead. I also began having the respiratory therapists come here to my room to do therapy instead of using my vest those few days when I could hardly get out of bed. They use a percussor thing that vibrates like a vest, but it's different and I like it as a break from the vest, so I'm going to keep doing it while I'm here. I do 8-9 nebulized treatments a day and 3 percussion treatments. I havent been able to eat much the last few days, so the nutritionist started making me some high calorie milkshakes and Ive had a couple of meal replacement bars. I feel like tomorrow i can eat again, my stomach is settled down now. The hospital offers massages where the massage therapist comes and works on my sinuses and lung pressure points. I had a lady the last two days, and today Mr. ponytail came back to do one. The massages are wonderful! I had disappointing pfts today...will try them again on Tuesday. Today was a nice sunny warmish day...Tiffany came and we went for a little walk outside. There is a pretty path with benches...crocuses were coming up...it was nice to breathe some fresh air and sit in some sunshine! We saw some bushes shaped liked monkeys, they were a little weird. My wonderful hubby came tonight and we listened to the Hiland game on the iPad.

Why am I in a childrens hospital, you ask? There are only a few accredited CF centers in Ohio and Akron is the closest to where we live, so I go to that center, which is connected to Akron Childrens Hospital. There is an adult wing at the hospital and I'm in that wing. I've been in plenty of hospitals in my life and if I have to be in a hospital, I'm glad I'm here! Everyone has been fantastic so far! And now I'm finished for the day and it's time to sleep so I can start all over in the morning!

Another day in the Hospital

2011-03-15T22:26:00.023-04:00

Hey everyone! It is JoEllen again. I was privileged to be in Marcia's presence tonight! I figured it was time to go visit my friend and I am so glad I did. I sure do miss her just like you miss her. During our visit she said several times, "I do not want to go home until I feel better". We all feel the same way too, Marcia. We miss you but we just want you better!

Today was a little rough. Marcia's PFT's didn't go well. She wasn't feeling well to begin with, so when it was time for the breathing exercises she just couldn't handle it. She was light headed and nauseous. So, they will try it again in a couple of days. Pray that she will feel better when that day rolls around. Today she found out the results from the cat scan: an accute sinus infection. Goodness! AND to top it all off, throwing up several times from the nausea. So yes, it was kind of a rough day.

It may have been rough, but she was definitely in good company for most of the day. Her daughter came to be with her for a chunk of the day AND she also had a surprise visit from her son and her two handsome grandsons. She was very happy about all of that. She definitely loves her family.

Marcia wanted me to share with you that she has been able to have a little bit of fun...the other day she enjoyed a 30 minute massage! The young guy (with a pony tail!) was very nice and worked with lung pressure points. He also used lemon grass oils, which is good for the lungs. She enjoyed it so much and looks forward to his return! :)

Another fun thing....with the help of a nurse, Marcia discovered a TOY ROOM! This special room was full of brand new toys...shelves and shelves. People donate toys for the kids (patients) at the hospital. The nurse encouraged Marcia to pick out a few things for her grandkids. She found matchbox cars and a doctor kit. The boys had a blast with the kit. Her oldest was "checking out" his Grandma with all the fun doctor gadgets. I also hear that he gave a dog a pretend shot!

Prayer request: IMPROVED lung function...IMPROVED kidney function...headaches to go away... and that tomorrow will be a much better day!

Keep the comments rolling in...SHE LOVES TO HEAR FROM YOU!

Medical Kit and Cars

Beautiful flowers sent from loved ones

Candy Stash!

Headachy day

2011-03-14T19:00:00.002-04:00

Today was a headachy sort of day...actually the weekend was too. It was bad this morning and i was very nauseous until i got zofran through my picc. It feels like a really bad sinus headache, but they're not sure if it's just sinus or a combination of sinus and side effect of the gamma globulin. My doctor has been trying hard to get this under control...I reacted to one med, my neck got all flushed and red (I was a redneck) I also had a sinus CT scan this afternoon. I've been doing nasal rinses twice a day (have done this for years) and tonight they are adding an antibiotic to the rinse. My picc had a small clot in it and even though it flushed ok and the ivs ran ok, they couldnt draw blood. The picc nurse came and put in the clot busting med and an hour later, it worked. No more getting poked in the other arm for bloodwork! I went to PT and did stretching and bending exercises and then did the treadmill for 5 min..it was set low, but I have to say, i was impressed with myself! I am now officially off of prednisone, PTL! Maybe I'll be able to sleep better at night, plus they are changing up my sleep meds a bit. I've been wheezy in my upper lobes, so 2 more xoepenex (nebulized) treatments a day, in addition to the other 3 times while doing my vest. My voice is improving, I'm able to speak again!

*******************
A few interruptions and treatments later. Got nauseous again, threw up and got zofran again.
My picc line is once again not allowing blood draws...geesh, what's up with me and picc lines?

Please pray for headaches and nausea to stop!
I have PFTs tomorrow...pray for lung function to be up!

And hi to my peeps in Florida...eat some Sweet Berries for me!

Finally, some time...

2011-03-12T19:51:00.006-05:00

I think I should have JoEllen take over my blog for me...that's the most comments I've ever had on a post! Seriously, thank you Jo Ellen for stepping in for me! And thank you all for the kind encouraging words and prayers...I appreciate it so much! I feel like I've been in sort of a whirlwind since I've been here (late Wed. morning). So many tests, scans, treatment times, physical therapy, etc. I had been trying to blog and couldn't get more than a couple of sentences and I had to do something. Finally this afternoon was calm...well, sort of! My sister was here and we had a relaxing time listening to the Hiland boys game...well, not that relaxing...it was a tense game, be we won!

They are taking very good care of me, everyone is wonderful here! I am not sleeping too well at night, because of the prednisone and just being in a different place and yes, they do give me something to help sleep. Last night went a little better. My face is puffy from being on them so long...they have been tapering the dose to get me off, because steroids weaken the immune system and mine is already not so good with the low t-cells. The CT scan showed severe lung disease throughout. Not fun to hear, but a reality.If my lungs were an ATM machine, they would be pretty low in money right now! The goal is to get a little more money in! I still am very short of breath, but am getting 02 pulse ox readings in the low to mid 90s, which is great. I've not had to be on 02, even at night. But my body just has to work harder to get it in. I got a gamma globulin treatment by iv Friday...it's a very carefully monitored treatment and I've had headaches yesterday and today, possibly from that.

Sunday
I am culturing pseudomonas and aspergillus. I'm on levaquin and merepenem Ivs...one every 12 hrs. and one every 48. Warren and Tiffany were here awhile today and I went for a walk down the hall...nice to get out. Jeremy, Steph and the boys will be here soon for a little.
I will they to keep blogging daily as I have time...when I don't, it'll be back to JoEllen.

Specific prayer requests for: Kidney function to improve
Lung function to improve...I do PFTs on Tuesday
I want my voice back! I've had laryngitis for more than a week
Rest

Thank you so much for caring and praying!

Akron Children's Hospital

2011-03-11T12:31:00.007-05:00

Hey everyone, this is JoEllen. Marcia asked me if I'd be willing to post on her blog today. Some of you may already know this, but for those who do not know, Marcia was admitted to Akron Children's Hospital (in the Adult Cystic Fibrosis wing) a few days ago. She has not been feeling well for the past couple of months and with the help of her docs she has been trying different things to help her get feeling more like herself. During her doc appointment on Tuesday, they decided it would be smart to admit her so that they could monitor her daily. We are not sure how long she will be there, but she will be there for at least one week. It has been an exhausting few days, lots of tests, scans, blood work, picc line (lots of trouble getting it placed).

Medical jargon:

-Today she started Pulmonary Rehab.

-Her kidneys are only functioning at 40%, so the medical staff are being very careful with the Ivs.

-Lung function is 36% FEV1 and .88L, so she has been short of breath.

-o2 sats aren't bad, her body just has to work hard!

Prayer Request:

Pray for her kidney function to improve as well as lung function. Pray for peace and rest.

We all love Marcia to pieces! Together, let's pray her through this icky time.

Thanks,

JoEllen

Wow!

2011-02-28T20:18:00.010-05:00

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 closed...as 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!

Finally, a Better Week!

2011-02-25T00:19:00.038-05:00

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 this...so 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 wedding...my 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 all...it 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.....

The Good, Bad and the Ugly

2011-02-16T19:20:00.006-05:00

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...

I'm enjoying...

2011-02-09T22:15:00.001-05:00

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

...seeing the blue skies against the snow.

...my Ipad...love, love, love it!

...my two little doggie companions.

...having my littles here yesterday for awhile.

...Francine River books.

...my 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.

Bummed

2011-02-04T21:30:00.002-05:00

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.

Bedroom party

2011-01-30T22:14:00.004-05:00

One evening last week, while I was hooked up to Mr. Medicator, my sister and three cousins came over and we had a party in my bedroom. BTW, I'm getting pretty good at operating this thing!

I forgot to take a picture of my sister (sorry Mary Beth!)...see her, she's there beside me on the bed.

Look at our spread! Bagel bites, tator tots, veggies, cheese and crackers, pineapple and the most wonderful raspberry New York cheesecake...and I might add directly from New York, as Gail's hubby had just come home from there. It was to die for!

Of course, my little Mickey had to be in on the fun!

Karen and Gail...

Karen just got back from a cruise, so we heard all about that.

Brenda...

Not only did we eat and talk, but Karen, Brenda and Gail provided entertainment for the evening! They are taking line dancing classes, so we got some music on my Ipad and they danced...even though there wasn't a whole lot of room.

They're really pretty good!!!

It was a fun evening...food, friends and LOTS of laughing...major serious laughing.

A great way to pass my IV time!!! Thanks guys!

After all, friends ARE the best medicine!

Another week

2011-01-29T16:00:00.001-05:00

I had an appointment today at Akron on Thursday, and it was decided that I need to be on the IV antibiotics for another week, plus they added a third IV med to the mix. I was also sent over to the Picc team at the hospital, because I knew my Picc was starting to feel a little blocked again, the meds went in ok, but it was more resistant to flushing. So they checked it out and used Activase and it busted up a partial clot. My lung function has not really changed in all this time...pretty disappointing! Hopefully another week will do the trick! Friday afternoon, the cf clinic called wanting me to repeat another blood draw, because it showed my creatinine level was high. So I did that here in town...the level was still high, so they pulled me off the one drug, tobramycin that could be causing this. (Creatinine has to do with your kidneys). So I'm just on two again and go back on Thursday afternoon...hopefully to pull the PICC!

In the meantime, W is sick with a cough and fever, missed two days of work. So he has pretty much banished himself to the basement bed or couch in the living room. I have stayed upstairs a lot. When I do go downstairs, I wear a mask. I wiped down the kitchen counters, door knobs, refrigerator handle, etc. today. And when I'm upstairs, we've been communicating by texting each other...he just learned how, so it's good practice!

Some snow and less bumpy...

2011-01-22T09:57:00.009-05:00

On Thursday afternoon, we got some of this.

Yesterday, it looked like this...

I loved watching the snow fall on Thursday! I was soooo happy that I didn't have to go anywhere too, like to Akron!! Since I've gotten the new PICC line on Monday, things have been going much smoother, I haven't had any blood clots or bends with this one. I've been able to get my meds consistently now and I've been in a routine...finally! My home nurse came Tues. morning to draw blood and check how everything is going. I did have to go to Akron on Wednesday for a check. My pft's (lung function) was still down, in fact even a little more than a week ago. I go back again for a check next Thursday. So I don't know how long I'll be on the IV's...we'll decide then. Yesterday morning, my cf nurse called and said they wanted a redraw of the bloodwork from Tuesday, since it showed my potassium level was elevated. They faxed an order and I went to the lab here in town. If it's still high, then I'll have to be treated for that. Of course I googled "high potassium levels in blood" to find out about that. I won't worry yet though, till I find out if it's still high or not. Plus, I have a lot of confidence in my cf team and feel like they're taking good care of me! I'm still feeling quite tired and nap a lot, but my chest is feeling MUCH much better and the biggest thing is I'm not quite as short of breath...that part was really bad the last couple of weeks! So the IV's are definately starting to help...hoping for smooth sailing the rest of the way!!

God Will Take Care of You

2011-01-21T21:46:00.002-05:00

I saw this on facebook today and I thought it was WAY too cute! This is a family singing in church with their little boy, who is around 2 years old. A child is never to young to sing a joyful song unto the Lord!

Some bumps in the road...

2011-01-17T20:21:00.003-05:00

I've been doing IV's now for a week and it has NOT gone smoothly! First of all was the bend in the picc line that the picc nurse fixed. Then on Fri. evening, I wasn't able to flush my line to get started and a nurse had to come out armed with Activase (a clot buster) and sure enough, it was a blood clot in the line. Last night, once again, I wasn't able to flush the line. I called the nurse who told me to call my doctor who told me to wait until today and go in to the picc center. So I completely had to skip my meds for the second time in a week. And today was my third trip to Akron in a little over a week. The picc nurse couldn't flush it either and we decided to go ahead and put in another picc. They were able to take it out and put another one in the same place, a little uncomfortable, but not too bad. There was a clot in the line... you could see it in the part she pulled out. I've just never had trouble like this before with IV's. I did my IV's this evening and it went fine...hopefully things will go better now, so I can be consistent with the meds. One bumpy week down...

My new buddy

2011-01-13T11:57:00.010-05:00

Well, the next day after resolving to try to stay healthy, I got sick. Yep, Jan. 2...fever, chills, cough, shortness of breath. I called the cf center after a couple of days because it wasn't getting any better and they had me come in. My numbers were all down, pulse high, sats down and they decided to send me over to the hospital to get a Picc put in. Luckily I could do it right away. Needless to say, it was a long tiring day. My meds were delivered at home the next day, and a nurse was scheduled to come Sat. morning to start the IV's. This time, because of the one medicine, I am not getting my handy dandy little portable IV pump, it's a regular big hospital pole machine thingy. I freaked when I saw it! Oh man, now I'm not only sick, I have to think and learn how to run this big sucker. After the Sat. session with the nurse, I was still confused, so she came back Sun. morning. I felt better after going through it again. When I tried it Mon. it kept beeping and I finally figured it out the problem. With the next one, I forgot to close off the line before I hooked up to the med and got tons of air bubbles. Stress...Tues. I got everything ready and all was going well, but I couldn't flush my line. Nope, nada. My SIL came and tried. No. So I called the nurse. They sent someone out, thinking I had a clot in the line and she brought a clot buster med to put in the line...she wasn't able to really get any of it in, so she called my dr. and they said I'd have to back to Akron the next morning and prob get another Picc put in. Oh man...stressful thought!!

My friend Gail was going to take me yesterday morning, but it was snowing so much the hospital and my dr. said I could wait till the next day. But it did quit and we decided to go in the afternoon, so hospital said ok. The roads weren't as bad as we thought they'd be. They did an x-ray of my picc arm, saw no kinks. The picc nurse (who usually is the one who puts mine in) was going to numb me up for another one, then she looked at the x-ray one more time and saw what she thought was a tiny bend near the beginning of the Picc. So she took off the bandage and moved it around a little without pulling it out and then tried to flush it and it WORKED!! We cheered! So she is totally my hero right now! They did blood work and sent us on our way...We got home and Gail stayed while I set up my IV stuff and I did it very slowly, but it went without a hitch...

So far, today has been wonderfully peacefully uneventful. No nurses, no going to Akron, the IV-ing went well, no stress. At least for today!

And now, here's my new buddy, and although I'm not really enamored with him, I'm depending on him to get the meds into me to get me well again! Seems like he needs a name...

Happy New Year!

2011-01-01T00:10:00.002-05:00

It's 1/1/11...and the beginning of a brand new year! Wishing everyone a happy, healthy New Year!! My resolution is to try to work hard to stay as healthy as possible! Cheers!!

Merry Christmas!

2010-12-25T13:57:00.008-05:00

Luke 2: 9-14

9And lo, the angel of the Lord came upon them, and the glory of the Lord shone round about them, and they were sore afraid.

10And the angel said to them, Fear not, for behold, I bring you good tidings of great joy which will be to all people.

11For unto you is born this day in the city of David a Savior, which is Christ the Lord.

12And this shall be a sign to you; Ye shall find the babe, wrapped in swaddling cloths and lying in a manger.

13And suddenly there was with the angel a multitude of the heavenly host, praising God and saying,

14"Glory to God in the highest, and on earth peace, good will toward men."

Home for Christmas!

2010-12-22T10:37:00.006-05:00

My Aunt Mary Hummel, who was 92, died peacefully yesterday afternoon...shortly after helping to sing an old hymn and hearing her granddaughter read the Christmas story to her. My dad's oldest sister was a very special person. She was a pastor's wife for 26 years and together, they also started an insurance business. Her life was about love and humility, always thinking of others. She sent a birthday card to everyone, yes, everyone in our church for years and years...until just this last year as her health declined. She was well known for her pie baking and homemade noodles. She taught me how to make the noodles, as well as homemade angelfood cakes. The top of her Christmas letter to all of her family and friends this year had this quote "In God's dear hands we are sure so safe, no suffering tears or pain, but in His time we'll surely find him waiting over there!" She told her children this would be her last Christmas letter and she closed with one of her favorite verses from Psalm 121:7..."The LORD will keep you from all harm-He will watch over your life; the LORD will watch over your coming and going both now and forever more."

I thought these words from the Steven Curtis Chapman song " Coming Home for Christmas" were fitting for Aunt Mary.

I'm going home for Christmas, and I'm going home to stay
I'm going home for Christmas and nothing's gonna keep me away
I'll be with the ones I love to celebrate the Savior's birth
I'm going home, home for Christmas

As we sing Joy to the World I can't help thinking
Of the joy that's shining in her eyes right now
And though our hearts still acche, we know that as we celebrate
She's singing with the herald angels and heaven's glowing on her face

She's home for Christmas and nothing could've kept her away
She'll be face to face with Jesus, as we celebrate His birth
And this gift will be worth more to her than anything on earth
She's home, she's home for Christmas
She is home
She's home for Christmas

Farewell, Mary...you will be missed! Enjoy your first Christmas with Jesus!

Easy Caramels

2010-12-20T22:45:00.001-05:00

Don't you just want to take a bite? I've made two, yes two batches of these...they are so good! As well as very easy. It does take awhile to wrap them, or I guess you could just let them in the pan and keep cutting out bites. Which I did for awhile, then sat down and cut and wrapped. With my first batch, I did dip a few squares in dark chocolate and sprinkled with sea salt. Here's the recipe, in case you need to whip up one last goodie these last few days before Christmas. I'm sure Paula Deen and Pioneer Woman would approve of this recipe's rich ingredients!

Caramels

1 C light Karo
2 and 1/4 C packed brown sugar
1-14 oz. can sweetened condensed milk
1 C butter
dash salt
1 t. vanilla
buttered 9x9 pan

Melt the butter over med/low heat in a medium size saucepan. Add brown sugar, salt and Karo and mix well. Add the sweetened condensed milk and stir again until it's mixed in. Cook over medium heat, stirring constantly until it comes to a boil. Keeping it at a fairly rolling boil, set your timer for 12 minutes, and keep stirring...don't let up the whole time. Talk to someone on the phone to pass the time or listen to Christmas music. No need for a candy thermometer. When the timer goes off, hang up the phone, add the vanilla and pour the delicious golden goodness into the buttered pan. Lick out the pan and spoon. Then let it cool for several hours. Cut in small squares or rectanges. Dip in melted chocolate or wrap in wax paper squares. I hadn't made caramels in several years, and these came out pretty much the perfect consistency both times.

Sweet little Christmas treats

2010-12-12T11:50:00.005-05:00

I made these yesterday, they are so easy! You put a rolo candy on each small pretzel, put it in a 350 degree oven for 2 minutes. Take them out, move them to a sheet of wax paper and push an m&m in it right away. Let them cool. Salty and sweet. Quick, easy, cute and really yummy!

Dear Santa

2010-12-11T23:03:00.004-05:00

Kayden asked for a piece of paper and said he wanted to write a letter to Santa. So he got a piece of paper and a marker. He sat at the table and wrote a letter t on the paper. Then he announced, "Here's my letter to Santa!" This kid cracks me up!!

Lucky Me!

2010-12-10T20:46:00.010-05:00

I won another giveaway, this time from Hoosier Homemade! This time I won a pair of Crocs!! I could pick out any Crocs I wanted off their website, except the new You line. I had to decide that evening and quickly selected these, called Surrey. They look brown in the picture I took, but they are actually black. I needed some black shoes for winter. I was a little worried about the size because Crocs tend to vary by shoe...but they came this week and they fit perfectly. They are made with a suede-ish looking material on them and are warm inside. I wore them today for the first time and love love them! I also got my Kitchen Aid blender that I won a few weeks ago. So much fun! I'm so amazed that I won two great things so close together. I'll probably never win anything again, but this was sure exciting!

T cells

2010-12-10T11:05:00.006-05:00

On Tuesday I had double appointments again...CF appointment was first. My pft's have stayed fairly stable over the last several months at around 45-47% (FEV1) and they confirmed that I can stay off the yucky antibiotics that were making me nauseous. They did do another culture, so I'm hoping it's gonna still be negative for bugs. I usually do have aspergillus, that's a given. Then to the next visit at the immunologist. First of all, she so doesn't look like a doctor, sooo young and pretty and in a sweater and short skirt, nice legs... These doctors just all seem so YOUNG!! Anyways, she had done blood work on me two weeks ago to check IGg levels and other stuff that I didn't really pay much attention to at the time, I was just trying not to throw up! But this time I was rational and ready to listen. My IGg levels, which are the B cells and the defense in your immune system came back fairly normal, a little low in one area, but not terribly low. BUT then she showed me the T cell results, of which I had no clue what T cells are. I made her explain it about 4 times. They are like the second line of defense in the immune system and my numbers were really low in 3 areas. She said she wasn't expecting this at all, usually this is seen in an HIV patient, which I am not. So she is puzzled and is going to consult with more doctors. Once again, I'm a puzzle...story of my life!! She put me right on Bactrim DS indefinately. She mentioned some more treatments I might need to do, but for now, just the Bactrim. She sent me to the lab to do a bunch more bloodwork to check how the T cells are working together, or if they are or something like that. She also had a test run for APBA, which stands for Allergic Bronchopulmonary Aspergillosis. I've been busy looking up all this stuff about T cells, etc. But I think I'll let this cute young doctor try to figure it all out...and hopefully she will! I go back in a few weeks. And so now I'm just going to concentrate on Christmas!

I'm back...

2010-12-09T22:20:00.000-05:00

Finally, a new post! I have been either sick, or tired, or gone...mostly sick! I had been on three antibiotics for about 6 weeks and I had such nausea a lot of the time. Two of them were to treat the two bugs I had and the other was added for a lung flare up. I tried zofran for the nausea, didn't help much. Then phenergan did help, but I had to go off of it for a few days before the new immunologist visit I had two weeks ago. That was a miserable day! I had a cf visit and then the immunologist visit, both in the same building. I had to do bloodwork, have x-rays and I kept throwing up in between things...really an awful day. I did go back on phenergan again after that and it helped, but the culture I did that day turned out to be negative for the bugs, so they decided to let me go off the meds early. Great news to me! So I've been off them for almost a week now and it's been SO nice to feel good again! I'm off and running again! Yeah well, maybe not running...at least back in action and it feels so good! I'll blog more tomorrow about my two doctor visits I had yesterday (CF and immunologist). And also I had a fun little adventure last weekend...

Thankful!

2010-11-25T15:32:00.005-05:00

Today I am so very thankful for the family God has given me! I am so thankful for their love and support. I am thankful to be feeling better today and can spend some time with them. I am blessed! Happy Thanksgiving!

Alphabet Song

2010-11-20T16:04:00.004-05:00

Here is Kayden's version of the alphabet song...

Kayden singing:

"A B C D E F G

H I J K

I'm a little P

Q R S T U V

W X Y and Z!"

Look what I won!

2010-11-15T22:00:00.001-05:00

We got back home from our girl week in Florida late Saturday night. While we were there I could pick up internet access, although my laptop isn't behaving properly...it just shuts off when it feels like it. Anyways, on Friday, it was cooperating and I was checking out some blogs that I follow. I saw on The Coupon Goddess blog that there was a Yoplait Winner and it was Marcia M. from OH!! I couldn't believe it. I have entered different contests from time to time, but of course I never win. I couldn't remember what the Yoplait smoothie contest was even for, I thought probably some coupons for free smoothies?...so I went back and looked at the contest page which was posted on Nov 4. So here's what I won....

Some coupons for these Yoplait frozen smoothies and a Kitchen Aid blender!! I should get it sometime this week...it made my day! Thank you Coupon Goddess!!

Finally...

2010-11-03T23:07:00.003-04:00

hey, I'm feeling better! I've had several bad days over the past two weeks. I thought I was getting better, then I got a sore throat. Plus I was feeling nauseous from the antibiotics I was on. It was a pain! I don't enjoy throwing up...Anyways, now I'm on Zofran for the nausea, the throat is better, lungs feeling better and life is looking up again...YAY!!! And just in time too! I had plans to go with two girl friends to Florida for a week of relaxing girl time. A few days ago, I couldn't imagine going because I felt so yucky...but now it's feeling doable and exciting. We are leaving Sat. morning. IF my laptop works (been having some issues), I might post some of our escapades from Florida...

Changing the subject...a young couple from our church (Lydia and Kirby) just had a baby boy yesterday, he was 7 weeks early. He had some breathing problems and today he went to be with Jesus. They have two little girls. I just feel so sad for them, it's been on my mind all day. Please say a prayer for them, even though most of you reading this don't know them. Thanks!

HaPpY HaLlOwEeN!

2010-10-31T22:52:00.013-04:00

This week I tried carving a jack-o-lantern.

Mickey was not so sure about it...

but the boys thought it was cool.

These two cute little firemen came trick or treating
yesterday. Perrin does not enjoy taking pictures.

If you look closely, you will see a rather ornery

look on his face...

It was his first time doing the trick or treat thing.

Of course they were carrying bags for treats.

Kayden yelled "trick or treat" and was into the whole

thing...Perrin said "just put it in the bag."

Bugs

2010-10-22T15:53:00.001-04:00

The CF center called me a few days ago to let me know that two new bugs have set up residence in my lungs. I've never cultured these particular bugs before. They are Stenotrophomonas Maltiphilia and Alcaligenes Faecalis. Try saying those names three times really fast! Seriously, who names these things?? The steno malt is the more worrisome one I guess. I've been put on two different antibiotics. which I will take twice a day for three months to try to eradicate them. I have been feeling yucky this week...low grade fevers, short of breath, more coughing, no energy. It may or may not be caused by the bugs, probably is just a normal typical flare up...but this hasn't been a great week for me. I'm guessing that IV's might not be too far away in my future. Hopefully the antibiotics will help me feel better. And hoping to get rid of the bugs before they start a real party in there!!! Go away...

You Go Girl!!!

2010-10-20T19:29:00.005-04:00

Meet my good friend Audrey...a cancer survivor!! She has been back to teaching and is doing very well. Her husband had a stroke two years ago and is also doing well, they are quite a team!! You guys are awesome!

Apple Dumplings

2010-10-15T11:00:00.005-04:00

One of my favorite desserts in the fall is apple dumplings. They are filling, fattening, yummy but you know, at least some fruit is involved! I love them fresh and hot, either plain, or with ice cream. Some people like it with milk. My friend Marcia over here has asked for this recipe, so here it is.

Apple Dumplings:

I used Gala apples this time, but won't again, because they took for.ev.er for the apples inside to get soft. I'm going to stick to golden delicious from now on. I do not enjoy biting into an apple that is not cooked when it's supposed to be soft, just sayin. Golden delicious are bigger than Gala, so you can use just half an apple per dumpling.

For the dough:

2 C all purpose flour

2 and 1/2 t. baking powder

1/2 t. salt

2/3 C Crisco butter shortening

1/2 C milk

Sift the dry ingredients together. Add the shortening like you would pie crust and mix until crumbly. Stir in the milk with a fork until moistened. Press into a ball. Roll out dough on floured surface into approx. a 12x18 rectangle. Cut into 6 squares.

Pare and core the apples. Lay one apple, cored side up on a square. Fill center with cinnamon sugar. Top with a small pat of butter. If the apple is small, put the other half on top. Dampen the edges of the dough with water and fold around the appple until it's all covered. Pinch edges all together. Put the pinched edges down in the pan. Repeat and put apples in square baking pan. Sprinkle small amount of cinnamon sugar over top and bake at 375 for 35-40 min.

Sauce:

2 C brown sugar

3 C water

1 t. cinnamon

1/4 C clear jel

4T. butter

Whisk the clear jel and cinnamon into the brown sugar until mixed, then add the water and butter. Cook on stove until slightly thickened. Remove from heat while apples are baking. I like my apple dumpling dough to be a little crispy, so I pour the sauce over the apples right AFTER the come out of the oven. It does take a little time to make these, but it's fun and they are so good and just taste like FALL to me! OK, now I'm hungry...

10-10-10

2010-10-11T11:33:00.003-04:00

I was going to post last night, but my computer was down. Yesterday was 10-10-10, kind of cool... but extra cool because it was my birthday! Yup, I made it through another year! Each year is a gift and I feel very blessed to even be here and be as healthy as I am! It was an Indian summer kind of weekend and my hubby took me on a getaway weekend to Columbus. The drive was beautiful with all the leaves changing color and it was so beautifully warm. We hotwired a really nice hotel for $52. We ate at The Cheesecake Factory at Polaris and we went to Penzeys, my very favorite spice place. I bought the mini baking set on sale and stocked up on a few other spices I love. We saw the movie This is My Life, which is definately not my hubby's kind of movie (chick flick), but he pretended to like it. We got home in time to go to my dad's place for supper, our family usually does a carry in on Sun. evenings. I didn't have to bring anything tonight, which was a nice break...I felt pampered! Ham loaf, cheesy potatoes, broccoli rice, green beans and birthday cake. On a side note...I ALMOST got to have my favorite Mud Valley ice cream cake. My dad was designated to get that, and I'll leave you guessing as to what happened, since we said we wouldn't tell anyone!!!

It's getting a bit complicated...

2010-10-02T15:35:00.002-04:00

First of all, we've been in Florida on vacation for a couple of weeks. Nothing like sleeping in, reading books, watching movies, napping, swimming, sitting by the pool, eating seafood and Sweet Berries ice cream, walking on the beach and watching the sunset. It soothes the soul!! Pictures may follow. It was hot, 85-90 degrees, nice. When we got home, it was quite a change...50 degrees. So we are still trying to adjust to instant Fall!! I do love Fall time, it was just such a sudden change.

Now on to the it's getting complicated part. I had a couple of calls on our message machine when we got back that were from the CF center. It was about a blood test that I'd had done about a month ago. I called back and they said my IgG levels were low, but since I had an appointment coming up on Friday (yesterday) they'd discuss it then. So yesterday Dr. M explained that a low IgG level can also cause lung, ear and sinus infections and that usually CF people have higher than normal IgG levels to fight off their CF infections, not lower. I immediately thought she was going to say I DON'T have CF, because it sounded like it wasn't a CF thing. (But then there are those 2 CF genes I have). But she said she thinks I might be fighting TWO diseases, CF and an immune deficiency. So she wants me to see someone who works with immunology. Now I'm not completely clueless about IgG levels, since one of my other doctors discovered this low level years ago and I got monthly IV gammaglobulin treatments for several years. But I have very small veins and finally they were kinda shot and I didn't feel like it was helping enough to keep doing it and I just plain needed a break. So I stopped. I did have the treatments again for about 6 months a few years ago. Dr. M also said that for a "normal" person my levels wouldn't be terribly low, but for a CF person, it would be considered very low. She talked to the Dr. she wants me to see and that Dr. is also working with a couple of other CF patients who have do have low IgG. So I'm being referred to her and will probably have to have a whole new thorough work up. Do any of you readers with CF have low IgG levels??? Just wondering. And so goes my exciting life!!! So we'll see what happens next...

My two favorite littles

2010-09-18T14:35:00.009-04:00

I do so love these littles!

Soaping!

2010-09-03T23:16:00.000-04:00

I figured out how to make soap! Early this summer I had bought some homemade goats milk soap when we were in PA. I loved how it made my skin feel. Warren said why don't you try to make some? Hmmm...I had no clue, but I like to try new things, so I researched online, got several books at the library, read through them and also talked with someone who makes soap. I used what is called the cold process method. I used these oils...olive oil, coconut oil and palm oil. You need a good recipe and a digital kitchen scale. You have to measure out all the oils, lye and water very precisely. I was a little scared of the lye (sodium hydroxide) because of my lungs, but I was very careful not to inhale any fumes. I poured the lye granules into the water(measured in a pitcher) outside and I had on a mask and goggles. I stood as far away as I could while I poured and stirred it and then went inside. The lye makes the water very hot, so you need to wait for it to cool down. While that was cooling, I melted the oils with a little bit of beeswax to help make a hard bar, the olive oil was added last since it doesn't need to melt.

The oils are melting while the lye and water are cooling.

When the lye and water mixture and the oils are both at around 100 degrees, I added the lye part to the oils. There were no fumes at all by the time I brought the lye/water inside. I started stirring for a bit, then used an immersion blender. You have to blend, then stop, blend and stop, or the blender gets too hot. It probably takes about 15 minutes of blending till it starts to get thicker.

This is how it looks when you start blending...

...and this is how it looks after about 15 minutes. Sort of pudding like. It's getting to the stage that is called "trace".

Note the goggle get up, gloves and long sleeves. See, I was being VERY very careful!

Now for the fun part. I added some honey, some lavendar essential oil and some ground up oatmeal.

I poured into two plastic velveeta storage containers that I got at Save and Serve thrift shop for 25 cents each. They are lined with parchment paper and sprayed with Pam. I laid saran wrap on top of the soap, put on the lids and then wrapped them in towels for 24 hours, because it has to cool slowly.

After 24 hours, I put my gloves back on, took the "logs" out of the mold and cut them, it sliced kind of like cheese. Then the hardest part, waiting a whole month for them to cure or saponify. The lye and oils react together and turn into SOAP! Ta da...lavendar honey oatmeal soap.

These bars looks really big and well, they really are. The recipe made eight large square bars. See the little oatmeal flecks in them?? They are about ready to use now, it's been 4 weeks. I've been using the small end pieces that I cut off and it works really nice. Kind of a feeling of satisfaction to know I made it! I made my second batch last week. Stephanie helped me. This batch we tried goats milk soap...yes, we used the goats milk from the goats I milked. It's a little trickier because the milk has to be slushy frozen so the lye doesn't curdle it because it gets so hot. Stephanie did the lye part and the blender mixing. She thought it was great fun! I now have 16 nice size bars of soap. Now she found a recipe for chocolate soap and wants to try that next. And on Dr. Oz this morning, there was a lady on who had made soap using breast milk. Oh, the possibilities!!! But we decided we'll probably stick to the goats milk...

A message for our friend Keetha

2010-09-01T10:29:00.006-04:00

HI KEETHA!! JoEllen and I just wanted to say hi and we hope you can sell your house soon and we think you should stop in Amish country to visit us on your way to Wisconsin...just sayin...you know you want to! Good luck with the move!!

Hot and a hot bargain!

2010-08-11T15:08:00.004-04:00

It's been soooooooo hot and humid lately!! It's hard to BREATHE!! I've been feeling really draggy lately, maybe the weather is part of it. My chest wasn't feeling too good the first week of August, so I was put on a pretty good dose of Cipro for 3 weeks. It has helped, but I've been so tired and starting today, they added a burst of prednisone. I hope that kicks in and perks me up a little. Plus I've been trying to do an extra treatment time, which makes 3 a day. My daughter will be starting back to teaching next week, so we had planned a weekend away, I need to have a little energy! We are going to visit Gettysburg, leaving tomorrow at noon. My sister and one of her daughters are also going, so should be fun.

This next picture is from a couponing adventure I had at CVS last week. I was so nervous because Stephanie (DIL coupon queen) wasn't along to help me. My first transaction I was supposed to use my previous 4.99 extra bucks, but I forgot (nervous, remember). The 3 things I bought were supposed to only cost like 99c but instead it was $6 something. Then I realized! So, I tried not to panic. Well, I can use them for the next transaction, right??? Next I ruffled through my coupons to make sure I had everything for the next, somehow a couple were lost. More sweating. OK. I told the clerk I'm new at this and pretty much don't know what I'm doing and she was very kind and helpful. And when I walked out the door, my sweating had stopped, my brain felt tired, but I was so PROUD of my bag of savings!!! My sister was with me trying to get deals too and it seemed like we were in there for HOURS!! I'm slowly figuring at least the CVS stuff out, but I know I'll never be a coupon queen, that's for sure.
So here was my best transaction that day, I did 3.

I got Bounty paper towels

Charmin toilet paper

1 Crest

1 Colgate (hubby took)

2 Dawn

1 Downy

1 pack of Duracell batteries, (which hubby grabbed right away)

Total was $8.93

plus 5 extra bucks for the next time

After 2 days of me admiring it on our table, hubby made me put it all away...

Some firsts

2010-07-24T23:00:00.000-04:00

Since this is one of the first times I've really updated my blog this month, I thought I'd blog about a few "firsts" I've done recently. OK, so here are some pictures of me milking (or attempting) to milk a goat for the first time. Why, you ask??? Well, I bought some goat's milk soap earlier in the summer and I LOVE it. I'm the type of person that when I like something, I tend to think I can make it. So I decided the first thing to do would be to milk some goats. I looked it up on you tube and it looked ever so easy. However, ummm, it wasn't! Thank you Inga, for letting me try this, it was kinda fun and now I can say I did it! We didn't get too much, only 3/4 cup. It has been in the freezer. I've since been researching soapmaking on the internet and I got a couple of books at the library. Also talked to a friend of Jeremy's who is a soapmaker. I'm collecting the equipment and supplies needed and hopefully can try it soon. You'll hear about it when I do! I learned some new words like saponification and trace...

Those back legs were just in the way and tended to kick!

What an experience! I will probably make my first batch of soap with water because the goat's milk makes it a little more tricky. But it is waiting for me in the freezer!

**********

I had my first couponing 101 experience, compliments of Stephanie! She, Tiffany, Mary Beth, Lindsay, Katelyn and I went to Columbus last weekend. We watched Kate play a college league game and the rest of the time we relaxed or shopped. Steph gave Mary Beth and I our first lesson in couponing the way she does. She gets things so cheap, lot of it is free. We went to a CVS, signed up, then she showed us how to use ECB's and how to do transactions. I'm still processing and I'm feeling like I had no clue what I did. But I got shampoo and a shaver really cheap in 2 transactions. Steph will probably have to go along to help me for awhile!!

******************

I helped my friend Gail with her son's wedding reception! They had gotten married on the beach in Siesta Key, FLA and had their reception here about a month later. We decided on a beach theme. First time I ever helped with a wedding beach theme. You can see beach towels on the chairs at the family table. The tables were decorated with candle tins, shells, and colored glass pebbles. It turned out cute! We played some music by the Beach Boys in the backgound.

I made 150 cupcakes and my Ya Ya friends helped me fill them and frost swirls on them. At the last minute we popped them into these cute parchment papers which were already folded. We bought them at Walnut Creek cheese in sleeves of 50. I loved them!!!

We had a candy bar where people could come to the table and fill a box with their choice of candy to take home.

Can you believe I made my first wedding cake...it's good it was small! The most difficult part was getting the layers even. I just put some real flowers on it, didn't look bad!

Have a happy life Scott and Brittany!

**************

I took Kayden to see his very first fireworks! Perrin doesn't like loud noises, so they stayed home with him. Hopefully next year he can cope! It was loud for Kayden, but it didn't take long until he was just delighted!

***********

This week was also the first time that I took Kayden to see a movie in a theater. Steph and Jeremy had taken him, but it was the first time I did. We went to see The Bee Movie. And the best part was that it was FREE...for both of us!! I enjoyed having a date with him, he's so entertaining to chat with! And the movie was very good! I have a new appreciation for bees!

**********

And last but not least...

...we celebrated our 34th anniversary the end of June. I guess that's a first for us too!

Pretty amazing cysters!

2010-07-14T15:41:00.002-04:00

Fairy garden

2010-06-23T13:33:00.002-04:00

My other little fairy garden! I didn't make it, I got it at a garage sale! Isn't it cute?

Square peg

2010-06-22T23:16:00.009-04:00

I read this article today about cystic fibrosis and I could so identify! I am one of the square pegs of cystic fibrosis, I don't fit the classic form of CF and like Laura, I was diagnosed as an adult. I have one gene that is delta F508 (very common in CF) and the other one is so rare, there are only about 20 other people that have been identified with it by Ambry genetics. Even though I have gotten sick with pneumonia, bronchitis and sinus infections ever since I was a baby, I know I'm very fortunate! I think the more they find out about CF, the more complicated they are finding it to be. The geneticist at my clinic is trying to find out more information on those other people with my same gene to follow them. Some are pancreatic insufficient, some are sufficient like me. They have found that there are other things that factor into it, like where on the CFTR gene your mutation is, and some things are just still a mystery. For example, 2 siblings could have exactly the same two CF gene mutations...one could die in childhood, the other one could live well into adulthood. It's just too complicated for my little brain, but I also find it very interesting! All I know is that like Laura in the article (and I've been in touch with her by email), I'm doing sooooo much better since I've been on all the CF medicines, nebs, inhalers, vest, etc. My PFT's (lung function) have stayed at 50% since my last IV's. It takes time and effort, but it's so worth it!

Summer dessert time!

2010-06-14T22:35:00.007-04:00

I have 9 strawberry plants in my garden and they have really been producing the berries! I've been picking strawberries, or "strawbs" (as Kayden and I say) for a few weeks. We've eaten a lot plain and I've made several strawberry desserts...

Strawberry delight.

Strawberry cookie pizza.
I've made 2 of them.

and of course strawberry pie! I've made at least 5 of these.
I guess it's good strawberry season is about over, however, my blueberries are beginning to ripen and these desserts would all be great with bluebs too!

Graduation, tornado and vacation

2010-06-12T21:51:00.019-04:00

My niece Katelyn graduated from high school two weeks ago.

Katelyn and my dad after graduation.

Her grad party was last Saturday. They had a small tent set up at their house, but wouldn't you know it...it was a rainy, stormy day! They couldn't set up and put table cloths on or balloons until right before it started. Actually, it cleared up enough and was OK during the party, from 4-7. However, a tornado went through here a little before 3. I had been doing my nebs and vest and therefore was oblivious to what was happening with the weather. Hubby was taking a nap and we hadn't been watching TV. The siren went off in town but I never heard it because of the treatment noise. As I was finishing up, I realized that I had to pick up 2 prescriptions before they closed at 3:00. So I hurried to the car and as I was driving out, I thought it looked really dark and thought I'd better hurry, it's going to REALLY storm...poor Mary Beth and her party! Just as I was turning onto the road where my brother lives, the siren went again and there was the loudest noise and wind and a large tree snapped and fell RIGHT BESIDE ME!! It fell the opposite way or it would've fallen on my car! I quickly drove to my brother's house, dodging branches which were flying all over the place. Then the rain started. I didn't know if I should run in the house or stay in the car. But suddenly the wind quieted. I have never experienced anything like this...I went right back home, forget the prescriptions! Hubby had woke up from the loud wind. There was no damage at our house except some shingles were blown off and part of our potting shed porch roof taken off. We had some very hard rain, which washed out a lot of topsoil and mulch in our back retaining wall. We couldn't do anything about it though, as we were leaving the next day for Pennsylvania, as Warren had a weeks vacation.

Here are some pictures of the tree that I saw go down. It doesn't look that big, but it was pretty good sized.

The next morning we left for PA. We were meeting some friends from VA and we had reservations to see the musical "Joseph" at Sight and Sound theater in Lancaster on Tuesday. We also met three other college friends that we hadn't seen in years. It was so good to see them! We had dessert and fellowship and took lots of pictures!

Me, Diane, Carol, Janie and Marilyn.

Ready to see the show.

The show was incredible, I highly recommend it! It portrayed the story in a very emotional way, focusing on forgiveness. I think we all had tears in our eyes at the end!
We left late Wed. morning, stopping at Hershey to tour Chocolate World. It smelled so good!! Of course we bought some chocolate! We got home at about 7:30 that evening.

Kayden went to Bible school this week. I picked him up Thurs. and Fri. and brought him here. He just learned how to pedal and was so proud! We have spent the last couple of days just cleaning up the dirt and mulch that washed onto the patio.

The end of a very eventful week!

Birthday boy!

2010-05-29T15:45:00.003-04:00

My youngest grandson recently had his second birthday! It's hard to believe that he's not really a baby anymore! He's really growing up and talking a lot...he's a lot of fun!

Spending time on the playground with grandma! Having fun on the slides...

Very serious about "driving" the playground equipment.

His brother loves dinasaurs and trains, but this is tractor boy! He comments on every tractor he ever sees. We were in a store a few weeks ago that had a lot of John Deere stuff and he was on cloud 9.

Stephanie and I made this tractor cake for his birthday. I baked it and she did most of the decorating...I think she did a great job!!

Here he's blowing out the candles. Notice big brother (and even mommy) trying to help!

I know I can do this...

Fingers are very helpful...

Yum!

Trying to get a family pose...

Opening one of his tractor gifts...he was busy playing the rest of the evening!

Happy birthday sweet tractor boy!!!

Spring beauty

2010-05-15T21:45:00.002-04:00

Alrighty, I'm back from a little blogging break. I've been feeling pretty good and just enjoying spring. AND the little grandsons. AND I took a weekend trip to Cincinnati with my daughter....which involved eating quite a bit of Graeter's ice cream! A whole pint of Elena's blueberry pie at once....I mean there was a Graeter's was right next to our hotel, I couldn't help it... Does anybody else out there have a thing for Graeter's??? I love working outside, except I get more wheezy in the spring and so sometimes I wear a mask, which isn't too much fun...not sure if it helps a whole lot anyways...Today was a great day, no wheezing at all! Here are a few pictures of the flowering spring things around our house. I'll post more flower pictures periodically. Flowering things make me quite happy!

Phlox.

I had fun making this little fairy garden! It's about 3 feet wide and in a flower bed in front of my house.

Not sure what this perennial is called...

Verbena bushes that are very fragrant!

Crabapple tree.

Service berry bush.

Speaking of spring beauty, here is my niece Katelyn heading off to prom! She looks a little different from her basketball player image, don't you think?? It was a cold day, but pretty and sunny. She was crowned prom queen!

It's OUT!!

2010-04-24T16:30:00.005-04:00

Yesterday morning my home nurse April came and pulled my picc. Last August, my picc got "stuck" and it took awhile to get it out, so I wasn't sure how it would go to take it out this time. But it slid out smoothly and she put a bandaid on. But then, just to add a bit of drama, all of a sudden it started gushing blood. So she had to press on it for about 5 min. and got it stopped and she bandaged it. I was glad I had my pajamas on because I got blood all over them. It was wonderful to take a bath last night and be able to get my arm wet. It was wonderful to go to bed last night and realize I didn't have to wake up early to "hook up" to an IV. It's wonderful to have a little more energy! By the way, when I did my PFT's this week at clinic, they had gone from 38% and .96 Liters when I started IV's three and a half weeks ago to 51% and 1.23 Liters. That's right, I said 51%!!! I amazed myself! Here's hoping I will stay feeling like this for awhile!!!

Still tethered

2010-04-16T15:50:00.004-04:00

Well, I'm still attached to my picc line. I did my best to get a 45% in my PFT's, but didn't...I did get 41% and .99 Liters, so it was up a little. Yay for that!! I still sounded pretty wheezy on my right side and they had me do a chest x-ray. I have another appointment next Wednesday, maybe I'll be unchained then :) I am feeling a little better energy wise, so that's a start!! I'm still going to hand therapy twice a week too, possibly for 4 more weeks. Between lungs and hands, lots of therapy stuff going on right now!!!

Clinic visit today

2010-04-13T00:18:00.006-04:00

My picc line and I have a visit to my doctor at Akron today. I would love it if they would say it's ok to pull it today. I've been attached to my picc for two weeks doing home IV's and we're good buddies, but I'd be quite OK saying goodbye. So hoping for better PFT's, which were at 38% and .96Liters last week. Not so great...My goal today is 45%. If you don't know what PFT's are, basically it's lung function. 45% 45% 45% 45% (thinking positive).

Easy dessert

2010-04-09T10:50:00.003-04:00

I had made this easy ice cream dessert for Easter. I forgot to take a picture of it until we had started cutting it and eating. It's a quick and simple dessert to have in the freezer. The thing that takes the longest is unwrapping the ice cream sandwiches!

24 ice cream sandwiches (2 boxes)

1 container of cool whip

jar of hot fudge topping (I like Dove, but any is good or use homemade)

peanut butter

Layer 12 sandwiches in an oblong pan

Spread half the cool whip on top

Drizzle with hot fudge

Drizzle with peanut butter (melt in microwave)

Freeze a couple of hours, then repeat layers

Add chopped peanut butter cups on top

Keep in freezer until ready to cut and serve

And that's it!
Yum!

Easter family fun

2010-04-07T09:20:00.000-04:00

A couple of weeks ago we planted grass seed into cups for each of the boys. Then we drew eyes, nose and mouth on the cup. The boys are watering them and having fun watching the "hair" grow! We used to do this in Kindergarten each spring when I was teaching. The kids loved giving haircuts!

We also planted some grass in a basket. I lined it with a plastic bag since I didn't have a liner for it. We watered it and set it in a sunny place so we could have this on our table for Easter dinner...

...turned out cute, don't you think??

Had to throw in a picture of my daffodils, because it looks Easterish...they survived the snow and have blooming beautifully now! My grape hyacinths are up too. Unfortunately, so are the weeds!! They were just lurking under the snow all winter, just waiting to pop up and cause trouble!! Anyways, my brother and sister and our families got together last Saturday evening for a casual dinner and Easter egg hunt for the kids.

Aila is the oldest of the grandkids and was the quickest to find eggs!

We pretty much had to lead Perrin to where his basket was and he wasn't quite sure why there was a basket in the tall grass...

He found some eggs with help, but doesn't he look like...why in the world are there eggs in the grass???

Kayden really got into the whole finding eggs and Easter basket thing this year. He just squealed with delight, especially at the basket!

We had hidden both real eggs and plastic. He had to stop and open every single plastic egg to see what was inside! And then he'd have to exclaim over whatever candy was in there.

Easter egg cutout cookies that I had made a couple of weeks ago and kept in the freezer.

Rice krispy nests that I made for the kids.
Easter Sunday was a quiet day for us...we went to church to celebrate our risen Lord and spent the rest of the day relaxing!

Spring???

2010-03-26T10:06:00.003-04:00

While I really DO love snow (during winter), I was just starting to breathe in the beautiful Spring weather. My pretty yellow daffodils and crocuses are now blanketed in snow and there was a 2 hour school delay. Snow, I'm pretty much done with you now, please go away.

Stuff

2010-03-23T13:40:00.014-04:00

Haven't been blogging much lately. I've been busy with stuff...we dyed Easter eggs one day just for fun. By the end, one cup had been spilled and several eggs were cracked, but oh well, they had fun!

He spilled the pink right after I took this picture.

I've been busy going to Katelyn's games too... (I have no idea why the font changed again...)

Here is our group of 5 seniors as the team is ready to leave for Columbus last Thursday morning. Katelyn is the taller blonde one. I will miss these guys!! The girls won their state semi-final by one point, thanks to a Katelyn shot.

Katelyn being introduced in the state final game.

Right before the game started.

After the game and getting their trophy.

The girls were runners up in the state tournament...quite disappointing for them. They lost by 4 points. I felt bad for them, they worked so hard since last summer for this. But on the other hand, how many people even end up their basketball career going to state? We were runners up last year also. ( Is that right?? Runners up doesn't sound quite right)... I had so much fun watching Katelyn play over the years, as well as her sister Lindsay and my other niece Jill. Twelve consecutive years. But it's Kate's last year and now I've run out of nieces! I may have to adopt one for next year!

I've been having trouble with my hands since the carpal tunnel surgeries. I went to therapy yesterday and I've got lots of scar tissue in my hands. The right one that was done 2 months ago is probably the worst. I have to massage it 4 times a day with lotion, she gave me a thing to do it with. I got the stitches out of my left hand last Thursday and it's kind of been splitting open. The other one did that too when I was in Arizona. I have to be a little more careful massaging the left one. My sister did this surgery a couple of years ago, and had no trouble with either hand. Leave it to me....! I can use my hands, they just hurt yet. I go to therapy again tomorrow.

Last Wednesday I had a clinic visit. I was wheezy again and my pft's were down. I was NOT happy because I thought they'd be up after the steroids. But nope...so tune up time is just around the corner. I haven't had to have IV's since the end of July. Monday I'm going to get my picc line put in...the good thing is that I can just go to Pomerene hospital here to get the picc put in. They only started doing picc lines since my last IV's. So I don't have to go all the way to Akron, which is great! And I can do the IV's at home again, no hospital, so that's great too. It'll be for 2-3 weeks.

Today is a rainy, dreary day, maybe a nice afternoon to read...or nap. I had some friends over for brunch this morning and we had a nice time. It has been really sunny and fairly warm out until today. You can really tell that spring is coming! Love it!! I'm ready...

Pray 4 Maggie

2010-03-16T22:52:00.004-04:00

Our Sunday school class has been praying for this little girl, who has been fighting leukemia for quite awhile (she is two years old). She has recently had some major bleeds and lung complications...and is in very critical condition. Please pray for Maggie and her parents, as well as the doctors working with her. Click here if you want to check out her blog.

Celebration time, come on!!

2010-03-15T10:28:00.004-04:00

This morning I took my last prednisone pill. PTL!!! This round of steroids was truly a struggle for me and I'm SOOOO glad to be done!!! The side effects just really hit full force. On the other hand, I know they are a great anti-inflammatory and I know they've helped my lungs, plus my joints feel great! I'm totally ready to be done with the hunger thing and not sleeping much. To celebrate, I'm going to dye Easter eggs with my little boys. Yeah, it's too early...but why not?? It's a cold, gray, cloudy day and that will brighten it up! We're also going to plant some grass in a container so we can watch it grow and then at Easter it'll be a nice centerpiece with eggs hidden in it! We might have to "mow" it a few times too!!

The other reason for celebrating is that our high school girls basketball team is now in the state final four in tournaments!! Last week on Wed. evening, we won a thriller with a last second 3-pointer sending us into overtime and we won by 5. Incredible game!! We won the next game Sat. night by 23. So now we are heading to Columbus to play Fri. at 1:00 in the state semi-finals. My niece Katelyn is a senior and is a post player. I've had 3 nieces play basketball over the last 10 years and it's been lots of fun! Katelyn played so well Sat. night. I'd love, love, love it if we could win the championship...we did when my other two nieces each played. So...wish us luck...and prayers that no one gets hurt! (Two girls on the team tore their ACL this year).

Yay Lady Hawks and no more steroids!!!

Easy chocolate mousse

2010-03-12T10:29:00.008-05:00

First of all, you bake a box of brownies. I like Ghirardelli, but you can use whatever brand you like. Or you can use homemade too of course. You eat as many as you want and then in the next day or two when they're not as fresh and good, you can make mousse with them!!

All you do is put some brownies in your blender. I just throw some in...maybe eight. Then you pour in heavy whipping cream. And blend. Keep adding until it's the right consistency. Blend it on high speed for a minute or so, you want it really smooth. And that's it! You have chocolate brownie mousse!

Pour it out, chill in the frig. I added a pirouette stick and more whipped cream on top. Chocolate shavings would be nice on top too. Rich and yummy!!

You could keep brownies in the freezer and then take a few out to make a quick mousse. You can also use leftover cake too. Use leftover pumpkin bars for a pumpkin mousse.

Springing...

2010-03-11T14:25:00.001-05:00

I. hate. steroids.

2010-03-10T23:05:00.002-05:00

need sleep
need food
grouchy
help

Look what I found today!

2010-03-08T16:49:00.003-05:00

Some little green shoots poking up through the earth in my flower bed!

Some grass in my front yard!!

And my sidewalk has appeared!!

I Scream, You Scream...

2010-03-08T10:31:00.007-05:00

Yesterday I saw on Facebook that Guerne Dairy was giving away free small ice cream cones from 2-9, no purchase necessary. Just to celebrate the fact that spring is around the corner!!! I don't like to pass up free stuff, especially FOOD, especially when I'm on steroids and ALL I can think of is FOOD. Plus we LOVE Guerne ice cream!! So we called Jeremy's and over we went. The small cones are actually pretty large. They usually have a special flavor of the week, but this was just chocolate, vanilla or twist. Kayden got the twist.

OK, so Perrin has not had many cones in his little life and didn't quite know what to do with the thing. He looked it over awhile, we showed him how to do it, but he had his own way of eating it...

We did eventually put his in a dish, which made him mad, but he gave in later and used a spoon. I just noticed that weird looking thing in the left corner, which is my wrapped up hand from my carpal tunnel surgery!! I will get it unwrapped and checked tomorrow, can't wait!! Stitches will still be in one more week. I'm very ready to get this big wrap off!!!

Speaking of ice cream made me think back to AZ and our favorite gelato. I forgot to post pictures of our gelato!!! I LOVE this stuff!! It is only in AZ and called The Gelato Spot. I so want to open a franschise here!! Seriously...It's expensive, but so very good! And supposed to be better for you than ice cream. Just take a look at this stuff!!! The one in the front left is snicker bar, which was one of my favorites. But I also loved the buttered almond there in the back row. Beside the snicker is coffee, which was Karen's favorite.

UUUUUUUUUUmmmmmm!

The fruity ones were awesome too. Love the presentation of them. It would be lovely to be able to order one tray!

Raspberry swirl with white chocolate and New York cheesecake were great. And the caramello. Every time we went in, we'd get about 6 sample bites before deciding.
I think I'll do some googling and figure out if I can make it at home...

Sleepless in Ohio

2010-03-05T10:47:00.006-05:00

That's me this week. Because of prednisone. I have energy. At night. Not fun. I just lay there and think. And toss and turn, trying to do it quietly, since I'm sandwiched between two little dogs and a husband. And I have to protect my wrapped hand when I turn. At least I will start tapering on the pred. after tomorrow. Prednisone makes me hungry too. And I want to cook and bake and eat. Only I can't because I'm one handed right now. I found these wonderful looking blueberry bars on a blog and I'm dying to make them. But I can't. I begged my sister to make them (so I'm hoping). Don't they look great??!! On the upside, the sun has been shining, my lungs are feeling better and my joints feel great. I just need more sleep! I took ambien the last two nights and it did help somewhat. I had my carpal tunnel surgery on Monday (left hand). Again, I was awake for it, had a local and it went fine. The doctor almost cancelled it since I was on the pred, but we ended up doing it. I'm glad to have the carpal tunnel thing behind me. My right hand is still sore, but healing well. I'll have my left hand wrapped and the stitches in it for another week and a half. I had a clinic appointment at Akron on Wednesday and my DIL Stephanie took me. My PFT's were up a few points, lungs sounded better, so all good. I had to have bloodwork to check liver function since I'm on sporanox (antifungal). Yesterday I went to a Bible study at church, they are starting a new Beth Moore study. Talk about energy...she is blessed!!! I've done two of her studies before, but it's been a few years. Tonight I'm going to a tournament game of Katelyn's...too bad I can't clap! But I'll be there with energy!!

Arizona trip

2010-02-28T22:15:00.003-05:00

From here...

Yes, this is how it looked as K and I left from home to go to Columbus airport to leave for Arizona.

...to here...

We were waiting in line to check luggage and then were told our flight was cancelled, due to stormy weather in Dallas, our layover...We couldn't get a flight out anymore that day, so we drug all our luggage back out to the car and drove to a motel closeby. We relaxed a bit and then went to a mall, to a movie (When in Rome). I was tired I guess and pretty much slept through it :( And then to the Cheesecake Factory. We left our car parked at the motel, which was cheaper than the airport and were shuttled back to the airport at 5:40 the next morning. This was a nonstop flight to Phoenix, leaving at 7:30am.

...to here...

It's quite amazing how the view can change in a few short hours!!

This is the view from our small patio at the motel. We had a little path to the pool and were close to the breakfast area.

One of the evenings, eating in a little Italian restaurant in Old Town Scottsdale. The way some of these tables were set up, you were halfway inside and halfway outside...pretty cool!

Chicken piccata and homemade ravioli. My hubby thinks I'm nuts posting about food...he's not a foodie like me!

One day a friend Linda from my church met us for lunch. Her parents winter in Phoenix and she was visiting them. We went to AZ 88 in Old Town. We sat outside on the patio. Across from the patio was a park and performing arts center. Some native Indians were performing outside. They had a time to take pictures after their performance, so we acted like typical tourists, I guess.

It was a nice change to see some flowers blooming again!! They were along a walking path close to the hotel.

We went on part of the Apache Trail, which was very pretty, especially Canyon Lake!! It was beautiful!!!

We stopped at a small town on the trail and these were the bathroom stalls!! So that provided some entertainment for us!!

This was the restaurant and ice cream shop there. It was papered in dollar bills. I guess you can sign one and they put it up...quite interesting...although we didn't contribute...

And this was a little mining town we stopped at for a bit. We didn't do the whole trail, because it gets gravelly and there are a ton of hairpin turns, but it was interesting and pretty. We had a lot of curves with the blacktop road...and there are no guardrails...

This was a road trip day to Sedona. We took a drive to Sedona the last time we were here. The red mountains are just beautiful, my pictures don't do them justice.

A Mexican place we really enjoyed that had homemade chips...SOOOO good!!! I was a pig!

This is on the way to the airport...our girl week was about to come to an end! We stopped for our last gelato treat on the way and sat out on the patio. The weather was great all week...always in the mid to high 70's. It did rain the day before we left, so that was a mall day and another movie. Such a fun relaxing week! We each had read through three books, soaked up vitamin D by the pool, watched three movies (we recommend Dear John), walked, slept in, ate a lot, enjoyed gelato almost every day, and watched the Olympics, talked and laughed (a lot)!! We tried to get bumped at the airport, so we could get free tickets like last year, (which we used for this trip) but it didn't happen...

and now I'm back to here...!!

But it's always good to get home...

Rose from fundraiser

2010-02-26T15:58:00.001-05:00

Just thought I'd share my beautiful rose with you on this snowy day...it makes me happy to be looking at it!