Healthcare Reform hits Home....

Tomorrow morning, Greer and I will drive over to Duke for her 10th laser treatment. We have traveled almost 600 miles to seek the best possible care for our precious baby. Our insurance provider in Alabama has gone above and beyond to make this journey possible....to give our baby just what she needs. What a blessing that is! I work hard for a great company and they provide amazing insurance that seeks to serve my family. God bless America!

We have had a wonderful weekend with the Enseys here in Raleigh, and have been so impressed by the opportunity we have found here in North Carolina. Dr. Burton has a great plan and hope that Greer's birthmark has the potential for a lot more fading. He and his staff are confident and capable, and we were blessed to find them. We want to keep coming back till he makes her birthmark disappear. We feel that God has placed us in the best possible hands, with the best possible hosts here in North Carolina.

The passing of today's Healthcare Reform Bill is very disheartening to me. It could mean terrible things for babies born with Port Wine Stains. I feel like Greer was born in a blessed time. She was born mere months after research proved that early treatment of PWS was beneficial. Because of that, she benefitted from early, aggressive treatment. She saw incredible fading before she was even six months old. She is hopefully going to complete serial treatments before the new healthcare plan effects our benefits. We thank God for that! Even with this great opportunity, we feel as if we are in a race against time. She has a ways to go. Dr. Burton feels that she needs several more laser therapies to reach her maximum fading. I am afraid that we won't get there before Obama's plan goes into effect. We are desperate to give our baby every opportunity to erase a potentially debilitating birth defect that Our Current Government deems merely "cosmetically unfortunate". I am counting on our Great God to overcome this, and I beg you to read this position statement from our point of view.....

Healthcare Reform Position Statement from the Vascular Anomalies groups

Let's give babies like Greer a chance at the best life possible! Pray that something changes quickly and that this current plan is modified. Pray for a miracle for these babies, for there are so many less fortunate than we.

My Button Said "First Visit"

The here and now....

What do I do with all this stuff that is swirling around me? Life, love, relationships. Do I blog about the everyday or do I only give you the deep things within my soul. For now I have chosen to be absent, and it feels right for me.

I'm living. and busy with all this living. Milestones are passing and pictures are snapping, but they aren't shared here. But the moments happen and I treasure them just the same.

I don't know what it means for this space, but for now.....it is what it is.

I'll get back with you on this one!

It was a Good, Good Night!

I wanted to share a fun little video with all of you! I have been busy with work and school projects and all sorts of other things, but the hard work that went into organizing this little number for the talent show paid off. We had soooo much fun doing it! I was so proud of these sweet kiddos! 22 in all, Kindergarten-Fifth Grade. We got the Talent Show off to a great start!

(before you click PLAY, don't forget to scroll down and pause my playlist at the bottom of the page)

That's Lucy out front and Reeves off to the right! Enjoy :)

At least I'm still updating my FB status

Megan Rutland Mileski Reeves asked our babysitter, "Hannah, are you on BookFace?" It made me laugh!

February 17 at 9:51pm

Megan Rutland Mileski I can't believe that tomorrow is my last day to work in good ole Jefferson Towers! It's been an amazing 13 years....

February 18 at 10:33pm ·

Megan Rutland Mileski Back from my cave in the basement bedroom. Thanks to my work peeps and my precious husband for taking over so I could recover from some kind of HORRIBLE virus. All better today!

Sat at 7:49am ·

Megan Rutland Mileski Tomorrow's the big day! WooHoo!!!

Sat at 8:43pm · Comment ·

Megan Rutland Mileski Reeves just asked, "Hey Mom, do they have Snowball Fights at the Olympics? You know, like for a medal?" Me, "No, baby, they don't." Reeves, "Well.....they really should!"

Sun at 8:00pm ·

Megan Rutland Mileski Overtime shifts in the new hospital, book reports, talent shows, children faking illnesses, dogs who love mud, recovering from a virus, mounds of laundry, late night Olympic viewing...I'm a bit overwhelmed by this week!

13 minutes ago ·

...and I took this really cute picture of Reeves on my iPhone!

What A Weekend!

I can't believe that it's been over a week since I got a post up on the blog. The week has flown....thanks to all sorts of excitement around the ole Mileski hizzle! We are soooo busy. Work, school, talent show rehearsals, school projects, church stuff, sniffles, 911 calls, household projects, birthday festivities, snowdays.....whew! B.U.S.Y. !!!

This weekend was all kinds of fun though. Snow....

WE. HAD. SNOW!!!!

Greer and Daddy marched around in it for over an hour before the big kids finally made it home from school. They managed to make it for over half the day, and enjoyed a snowy recess....a rare occasion here in the deep south! Days like these are what memories are made of! Right? Right!

Gotta love a snowy sunset......something we rarely may never, ever see again.

I want to freeze this picture in time! Gorgeous, huh?

....or maybe this is the most gorgeous photo of the weekend!

Chris and I went out for our Valentine's date last night (more on that and the 911 call tomorrow)....

....but today we made it special for the kiddos!

It was cold and dreary this afternoon, so I decided that an afternoon at the movies was the perfect solution! I took the big kids to see "The Tooth Fairy" while Chris and Greer set up for an awesome candlelit dinner at home! The kids LOVED it!

Dim lights. Candle-light. Cheesy, dollar-store gifts and decorations. Plastic Champagne Flutes filled with sweet tea (we forgot the sparkling grape juice). Norah Jones on the Apple TV. Jarred Spaghetti (their favorite). Paper Napkins. Mom and Dad waiting on them hand and foot (we had the waiter and waitress thing down pat!).....

Lucy said, "Y'all are the best Mom and Dad, EVAH!"

Reeves asked, "Are we Rich? Are you our Servants?"

Chris said, "Yeah Buddy, something like that...."

Big Girl's heading to Duke!

****UPDATE! ****

Our Duke treatment won't be till March 22nd! Just be in prayer for

us till then! Thanks so much, sweet friends....

Playing in the Hotel Shower

January 9, 2010

We went for Greer's two-year-old check up today. It's crazy to me to think that she has been a part of our little world for over 2 years....CRAZY! She is such a blessed ball of joy, I can't even stand it! All wide open and curious and into everything. I think the best way to describe her is BIG! She sleeps big, she eats big, she loves big, she laughs big, she runs big, she grows BIG! In fact....she is the height of the average 3 year old!!! Off the charts for a child her age. I could just eat up all 33 pounds and 37.5 inches of her! Oh, and did I mention how BIG her feet are? In the words of my pediatrician....."those are Sasquatch feet!"

I caught my pediatrician up to speed on the current state of the birthmark treatments, so I thought I better catch all of you up, too! My last post on the subject was back in the fall when we were trying to come up with a game plan. It's kind of a long story, so here's the link if you want to catch up. We had some big decisions to make and we have prayed and worked through all of our options. I am still planning to write some letters to the "powers that be" here in Alabama, but for now we must travel out of the state to get what she needs.

We had a few options (California, NYC, or North Carolina)....but we decided that traveling to Duke made the most sense for us. Dr. B comes highly recommended, and we are blessed to have a home away from home in Raleigh. My precious Amy moved there last Summer and will host us for the long weekend. I'm trying to think of it as a little vacation and a good excuse to spend time with my beloved friend! I feel an amazing peace about all of it and know that God's plan is unfolding before our very eyes.

Greer's birthmark has shown remarkable fading through all of this, but we have seen significant darkening over the past 6-8 months. Last summer she had close to 75% fading, and now I would say it is more like 50%....some days it's darker than others. NOT traveling to seek better lasers is not an option for us. I want to know that I did everything within my being to maximize the chance to remove this birthmark. So we go. and we continue to pray. and we continue to praise our Heavenly Father for the opportunities he has given us.

As we were leaving the doctor's office this morning, I noticed a young hispanic mother with a large facial PWS. It was dark, dark purple with thick tissue in places. She was a beautiful woman. She seemed happy and confident, and I wanted to get to know her. I wanted to ask her a million questions, but I knew she would think I was crazy. I prayed that if Greer's birthmark never faded even one little bit more and if it eventually became as dark as the one on that lady's face that she would be just as confident and lovely.

I prayed that Greer's BIG, beautiful spirit would shine as bright as it did back on this day. This is a day I will never forget. This is a time I will treasure forever. I really don't think I could love a little soul any more than I love my Big Girl!