Monday, February 14, 2011

Things I'm loving on Valentine's Day

Love that my link-up got featured at one of my favorite blogs! Scroll down at eighteen25! (I may or may not have made additional touch-ups to the mantle since that photo was taken...)

Love that Max is loving reading! This nose-in-a-book picture is very reminiscent of my childhood!

Love treating all my sweethearts to something a little special for breakfast.

 Love my gorgeous girl and her beautiful flute playing (pictures from Solo & Ensemble last weekend.) And love, love, love what a great big sister she is!

Last, but certainly not least, I'm loving this guy. He's been hanging around for almost 20 years now and hasn't ditched me yet, even when we had matching bald heads! We've been through a lot together and I can't imagine anyone I'd rather go through life with. 

Love how truly blessed I am!!

Thursday, February 10, 2011

When preschool boys do crafts...

Mason had a playdate with two of his BFFs from preschool (his words! He and Max have been talking about how many BFFs they have lately.) Mostly, they played outside in the gorgeous sunshine, chased each other through the house and raised the decibel level a bit upon finding Micah's drum set in the basement.

But being a crafty mom ;), I told Mason the other day that he could do some chocolate covered pretzels with his buddies when they came over. I figured that a craft involving food would appeal to even the most die-hard anti-craft boy.

Probably should have figured out a different delivery method for the sprinkles...ha!

Looking at Mason's face, I think it was probably worth the mess. :)

Thanks, J & C, for a great playdate!

Wednesday, February 09, 2011

Cha cha cha changes!

There are many things that are frustrating about this house, but one thing I love is my mantle! Actually, I have two, but this one just begs to be decorated. And I just can't seem to help myself, adding and changing, adjusting and shifting, putting up just one more thing to get it to look just perfect.

I added the banner this morning - duck cloth/canvas cut into pennant shapes and stamped with red acrylic paint. I tried using PTI's Boxy Banner Die (scroll down) but it didn't quite cut through the canvas. Not sure if I had the die cutting "sandwich" just right because those dies cut through felt like butter. It did, however, make a great pattern and it was easy to follow the almost-cut-through lines with my Ginghers. To keep things simple, I just attached the pennants to red twine with cute little clothes pins I picked up at Hobby Lobby (yay for the new one in Kennewick, which is only an hour from my house!)

Edited to add - Letter M & Ws and the number 8 (we have 8 in our family) came from Restoration Hardware. Had a friends & family coupon last fall and splurged a little! :)

I was absolutely giddy when eighteen25 put another free printable on their blog for Valentine's Day. I LOVE these!!

Picked up the white W and 8 balls at Pier One. Couldn't find any Ms.

Just a few little red hearts and tinsel in jars and an older canvas I made for Michael's office back in Minnesota. Yes, Max often made that face for pictures :)

Do you decorate for Valentine's Day? This mama to 5 boys and 1 very anti-pink/anything frilly daughter relishes the opportunity!

Posted this at my very first linky party over at eighteen25.

Tuesday, February 08, 2011

Valentines - less than a week away!

I saw these all over the web last year and wanted to make them for Max's kindergarten class, but February 2010 was a bit of an earache-y, bells palsey-ish blur. I *think* we went with something store bought, but I couldn't tell you for sure.

This year, I'm on top of it! Other than a little drama from Max about posing for the picture, these were super easy and turned out really cute.

I'm not sure who to credit for the original idea as I saw it on several blogs last year. Here's one from Brassy Apple and she linked from 24*7*365.

Friday, February 04, 2011

Cleveland Clinic trip

I posted this on Facebook, but I have a few friends and loved ones who don't hang out on FB, so I'm copying it here.

A quick (ha!) summary of my trip to CC, mostly so I don't have to type it out or text it over and over :)

First appointment was with Dr. Carol Langford, who is one of the leading docs in the nation dealing with Wegs patients. I was very impressed - so knowledgeable, very personable, sat and answered all our questions (mine were a little more emotional; Michael's were much more on the clinical/technical side as you might imagine.) Her initial impression is that the Wegs is still active and I need to shift to a different medication but she had several tests she wanted to run as well as other docs I should see while at CCF before making the final decisions.

Had blood drawn - kidneys are functioning well; sed rate is still high; CRP is high (C reactive protein - levels rise in response to inflammation), glucose was somewhat high. Pretty much confirmed that the disease is still active and that I am now diabetic (steroid induced.)

CT chest showed some small nodular opacities consistent with Wegs as well as ground-glass opacities. Again, consistent with Wegs, but hard to determine when all this formed. A CT back in Feb of 2010 was clear, so obviously sometime in between, but no way to tell from the CT if it happened early on or more recently.

Also, the CT showed I have a severely atrophic spleen - didn't get a chance to ask Dr. Langford about that but I haven't read anything that connects Wegs and spleen atrophy. I'll have to check into it further when she calls me this week.  Unfortunately, since I'm already immuno-compromised, lack of a well-functioning spleen means I am even more prone to bacterial infection, etc.

Met with the pulmonologist on Thursday and he went over the CT chest results with me. He thinks there is some bronchial obstruction and wanted to do a bronchoscopy. He was actually able to find a spot to squeeze me in...but then we ended up not being able to do it because Michael had already flown home. I needed a "responsible adult" to be with me since it is done under conscious sedation. I even promised to sit in the waiting room all day, but it was a no go. I seriously offered to "rent" a responsible adult if one was available! I'm working on getting that done through the pulmonologist here in Walla Walla. (update is that we are waiting for my films to come from the radiology library at CCF and they are currently stuck in all that snow - UPS is showing "adverse weather condition exception" with no estimated date of delivery.

Friday was ENT day. Got a nasal and tracheal endoscopy. Wegs tends to attack the subglottic portion of the trachea and they were checking to see if that was a cause for my shortness of breath and voice changes. Fortunately, there was only some slight narrowing (about 20%, which is not a lot by Wegs standards) and some inflammation, but nothing severe. The ENT also suspects bronchial obstruction since nothing in the trachea was a problem.

Nose is a different story - everything started in the sinuses back in Oct of 2009 and it is pretty messy. Deviated septum, lots of scarring, crusting...all kinds of gross stuff. He recommended a couple of scrips, one for an nasal cream formulated right there at CCF for Wegs patients and then another ointment you mix with saline for nasal irrigation. Much more aggressive than the neti pot ;). But, he said that the majority of his patients who follow these two recommendations are able to avoid future nasal surgery and saddle nose deformity (a very common Wegs defect.)

Pending the results of the bronchoscopy, it looks like I will by stopping the Cytoxan (chemo) and starting on Rituximab. CCF was just part of a big study with this drug and the results are promising. Could possibly become the "gold standard" for Wegs treatment and I read yesterday on a Wegs support group site that they are expecting FDA approval for Rituximab in treating Wegs patients. Currently, no drug (not even the Cytoxan, which has been used for 25-30 years) is FDA approved for Wegs.

It is administered by infusion, two treatments two weeks apart. Takes about 6 hours at the infusion center. But then it is good for about a year, at which time I would hopefully be in medical remission. It is super expensive because it is a targeted drug (targets B cells instead of the broad spectrum kill like Cytoxan) so I may have to fight a bit with our insurance, but Dr. Langford said she didn't feel it would be a problem since I've already had almost 10 months of chemo without the results we want. She is very willing to write letters, etc. to get it approved.

Prednisone -ugh! Unfortunately, it is a very unique drug and I will have to stay on it at a high dose for awhile, at least through the induction period for the Rituximab, but Dr. Langford was also anxious to begin tapering ASAP. Yay!

So that's about it. Very, very worth the trip. Just to be seen by people that see Wegs patients all the time was huge. It affects about 3 in 100,000, so I imagine I'm the only Weggie hanging out in Walla Walla :)

Thursday, February 03, 2011

Using up a pile of SC paper bags (not for the time crunched!)

Studio Calico kits arrive monthly in lovely brown bags. I always save them for awhile, feeling guilty about throwing them away.  And then they end up in the recycle bin, ideas for their re-use never coming to fruition. But this month, I actually used almost two months worth of bags! 

There are tons of wreath projects around the web...and I'm still wanting to make a book page wreath, but
I really love how this one turned out.

Supplies needed:

12 SC bags
1 hard styrofoam wreath form
scalloped circle punch
glue gun
ribbon, tulle, a strip of muslin, etc. for the bow hanger

Straighten out your paper bags, but leave them whole (so the punch is going through both layers.) Punch....and punch...and punch. I used 12 bags, approximately 108 circles per bag.

I used Stampin Up's scalloped circle punch. I did have to sharpen it with tin foil about half-way through. The punch definitely got a workout!

Remember this technique from way back in preschool? My older kids attended an excellent little preschool in Philadelphia at the Smith Family Playhouse. Every spring, Miss Christine would have the kids take out their pencils and little squares of yellow tissue paper to make freesia art (freesia was always the first plant to flower in Philly.)

Take each individual scalloped circle and curl it around the eraser end of a pencil.

Use your hot glue gun to put a dot of glue on the end of your blossom and attach to the wreath form. Do this 1295 more times ;)

I attached mine very, very close together. You could probably do it a little further apart and have a less dense look.

I left the back of my wreath without blossoms. In retrospect, I wish I had wrapped the wreath form in muslin or something prior to attaching the blossoms. It lies very nicely and flat against the wall, but when I put it up in front of the mirror, you can see just a bit of the green from certain angles.

The finished project!

Wednesday, February 02, 2011

It's been awhile, but for good reason

I had good intentions. A December Daily, lots of blog posts, finishing my TH tags, and oodles of Christmas and holiday activities with the family. It ended up much simpler, with me letting go of plans and even traditions out of necessity rather than by choice. 2010 ended on a rough note, health-wise, and I wasn't particularly sad to see it end.

All through the beginning of December, I was contemplating my OLW (one little word - a la Ali Edwards) and one kept settling in my mind. I suffered a bit of guilt with my word (phrase, actually) from 2010. I had, again, so many intentions, but all of the health problems this last year really derailed my goals. And so, I am slowly acclimating to the new "normal", which is me with a chronic disease, lots of meds, and never, ever enough energy to get my to-do lists done. Readjustment of expectations was in order.

My 2011 word?


As I made my way through the month of January, I am confident I made the perfect choice. Improve can cover the very smallest of gains - spiritually, mentally, physically, creatively - and it will cover the big changes for better as well. It will apply to the day when a long nap is my most productive endeavor. It applied when meeting with Dr. Merryfield to work on underlying health (improving diet, hormone levels, stress levels, etc.) and definitely came into play with my decision to spend a week at the Cleveland Clinic, meeting with some of the best Wegener's doctors in the country.

Here's to a new year, full of improvement!