My mini gardens

I had fun making this mini resurrection garden for Easter. I saw the idea on Pinterest and it was so easy, using a small pot, potting soil and grass seed. I gathered the small stones from beside out driveway and the hardest thing was finding the big stone for in front of the tomb. I couldn't find a round one, but I found this in the woods beside our house. I broke off small twigs to make the crosses and hot glued them together. Kayden is getting ready to roll the stone away here.

This was such a good way to explain the Easter story to the boys. We also used Ressurrection eggs that I'd made last year. 

Today the weather was beautiful and I played and made two fairy gardens. This one is in a bowl shaped pot that's maybe 14 inches wide.   See the little turtle? The funny looking thing by the bird nest is actually a bird and poor fairy has a hand broken from years of wear and tear.

 This one is larger than it looks...it's actually in the ground in a flower bed. It's hard to see everything clearly, I know. But it was fun to do. They will both look very different in a few weeks when the plants are growing. I mostly used starts of things I had from other years of fairy gardens. A fun day of playing outside!

Taking a break...

from IVs that is...When I'm on IVs, I have a home health nurse who comes once a week (she is great!) plus I have to make the trip to clinic once a week. The nurse usually does bloodwork and changes my port needle and dressing...or they do that at clinic. At my appointment, they go over the bloodwork, take a culture and check lung function (pfts)... Then decide if I should continue the Ivs for the next week. Yesterday was an appointment. My pfts have not gone up , actually went down a tad. I still don't have much energy, short of breath and feel pretty much the same as when I started the IVs almost a month ago. My lungs were not behaving and I sounded pretty tight and wheezyish. I don't feel terrible, I just wanted to feel like I did last September after IVs. Another burst of prednisone is an option, but I said no for right now. We decided to pull the IV and take a break. I'm in the feeling free mode today! I'm hoping this doesnt mean a new lower pft baseline...so I'll see how the next few days go. My joints hurt, hands, wrists and knees. I only wish I had a little of the energy my little grandsons have! They wanted to race me around the house the other day...ummhmmm...right, boys. My SIL with the bone disease had surgery at Cleveland Clinic last week. They took out the rod in her leg, scraped the inside of her bone and put in a new larger rod. It was a rough few days, but she is home and doing better. The hope is that this will stimulate new bone cells to grow, help her break heal and get her walking again...which would be awesome! We will see. I took hubby to the hospital for carpal tunnel surgery. He did well...he has to ice it a lot for tonight and tomorrow. Its his dominant hand, so it'll probably be more difficult than last time. He'll be off work for a couple of weeks. So we've had lots of medical stuff going on lately! Prayers are appreciated!

Silly

Everybody needs a couple of silly little peeps and a cute dog. It's a good thing!

Catching up

Im discovering that I'm more of a blurker than a blogger, plus a facebooker and pinterester. But I'm willing to catch up a little. Health wise, things are not quite so good. I had a clinic appointment a few days before Easter and had been still tired and short of breath. My pfts were down a bit too, so it was decided that the oral antibiotics I'd been taking had not really done the job and I should start IV antibiotics. I asked if I could wait till after Easter and they said yes, if I start on Mon. So they set everything up with home health care. What was really nice is that I didn't have to go back up on Mon and get a picc line put in, since my port has been in for 6 months, just waiting to be used. And I, on the other hand wanted to put it off as long as possible! But now we are bonding. The nurse just had to come access it...which means sticking in a needle with tubing into my port, so I can hook up to the IV medicine. I have the big IV pole for one med and a portable little machine for another. I hook up four times a day. That, along with my regular treatments takes a chunk of my day. I had another clinic appointment yesterday and lungs sounded very wheezy, some crackles and my pfts (lung function) fell even more. Hmmm, I was not happy. I culturing a yeast fungus in my lungs. Often it is aspergillus, this time two other kinds. So they added an anti fungal med plus 60mg prednisone, which I have a love/ hate relationship with. It helps my joints (which always get worse with a lung exacerbation) and usually gives me a little more energy...but I don't sleep. Hate that part.

I have some Easter pictures to post and some flowering spring pics. I couldn't find my camera cord, but did now...so I'll post them soon. Also, Kayden lost both his bottom front teeth a couple of weeks ago. He is barely 5 and 1/2 and just pulled them right out himself when they got a little wiggly. Perrin is almost 4. The babies are growing up...I wish I could slow it down! But life doesn't work like that. Kayden has been so torn about what he wants to do when he's grown up. He said his choices are digging for dinosaurs, hunting alligators or being a train engineer. A couple of days ago he said he thinks he will be a paleontologist. Perrin said he thinks he will be a race car driver. I needed to write this down so we can look back and remember. Fun stuff! I should really carry around a tablet and write down stuff they say, sometimes so funny...but part of it is the WAY they say things.

I checked Facebook a little while ago and found out my uncle from Florida died...he had Parkinson's and a heart condition. I feel sad, but at the same time happy that he is at peace now in Heaven...

P.S. it's after 1:30...Im WIDE awake! Maybe I'll keep reading The Hunger Games triology...halfway through the second book.

Spring

Hello Spring! Goodbye Winter that never really was. I guess most people experienced a very mild winter this year...We had a couple of little snowfalls that pretty much melted the next day. I never really got the one big snow up to the mailboxes that I wanted. The weather has been amazing for March...yesterday and today it hit 80! It's hot! And now that I'm in Spring mode and everything is blooming a whole month early, I sure hope it doesnt get cold again...but who knows, with OH.

Well, I've just been a busy little crafter lately...using ideas of things I've found on Pinterest. I've made three scarves, a cute pillowcase dress, painted a picture frame and added just a scrapbook 12x12 paper to make an easy, cute picture to hang. I've also made some DIY cleaners, one of which made my sinks, tubs and toilets very sparkly. I tried a liquid laundry detergent, but think I like my regular homemade powdered better. Ive tried some good recipes as well. I love pinterest and all the ideas I've found! My next project is to make a mini resurrection garden for Easter. I wonder sometimes how I would've managed to teach school and raise kids if I would've had Facebook, Pinterest and blog reading then...you'd definitely have to discipline yourself as to time spent on it!

I'm feeling ok, just get nauseous sometimes from my antibiotics that I'm on, but they are helping.

And that's it...here's to Spring!

A bump

I've hit just a little bump in the road again...started feeling extremely tired last Wed. afternoon and joints hurt, chest was starting to feel achy. I called my dr. Fri morning and they put me on two oral antibiotics and made an appointment for me to come in on Monday. So I went in yesterday. My lung function had only dropped a couple of points and Dr. M decided to add a prednisone burst for 5 days and stay on the two antibiotics for a month. And increase airway clearance. So that's the plan, unless I get worse...then we will go to IVs. WHICH I haven't had to do since Sept!! So I get tired of piccs and get a port put in in Oct. and haven't even had to use it yet...pretty impressive, don't you think? I'm still trying to bond with it...I probably won't really love it until I need IVs again! They flushed it yesterday. I've been going to the hospital to get it flushed each month. Last month's flush wasn't particularly enjoyable, I had to be stabbed three times! (wincing)

My plan is to feel better very soon, like this week...it's just a little bump. I'll be back.

A not so great week

A simple cold, well a nasty simple cold kind of ruined my week. I have been sailing along here for a few months doing/feeling well and loving every minute of it. I started out with a firey sore throat early Last Sunday morning. Then stuffiness set in. And then on Tuesday morning, I had eye surgery to remove a cataract, which was caused by so much steroid use, they thought. Since I didn't have a fever, it was a go. Lots of eye drops a few days before, day of, and lots after for the next month. I was awake, but very relaxed, didn't care, and saw pretty colors during. That's what I remember...pretty kalaidoscopy colors. I've had LASIK surgery several years ago...it was somewhat like that afterwards, scratchy and blurry. But with a bad cold on top of that, it was kinda miserable. Today I'm feeling much better overall, and my eyes have quit watering, my nose has quit tickling, and I've stopped sneezing all the time. The miracle is that the cold didn't go to my chest! At least so far!

I started my second round of Cayston on Jan. 31, so I'm finished with my third week. Yesterday I received an email from the CF Research, Inc that there is presently a shortage of Cayston right now, although if you're already on it, they will keep providing it if at all possible.

Here's some pretty great news though...
There has been a new drug released by the FDA a few weeks ago called Kalydeco, (kuh-LYE-deh-co) which is VERY good news for some people with a certain cystic fibrosis gene called G551D. This oral drug is the first one developed that treats the underlying cause of the disease, not just the symptoms. You can read more about it HERE. This will help about 4% of the CF population. One of my genes is Delta F508 (the most common CF gene) and there is currently research being done for that. Kalydeco is definately major progress in the right direction!

Uh Oh, I did it!

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!

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

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!