Home from Duke and Happily Healing

I can't believe that I have let 2 weeks go by and no POST! I know a lot of you have been praying for my sweet girl as she has been recovering from her latest laser treatment, and for that I am so very appreciative! We were blown away with the team at Duke. Every single part of the experience was exceptional.....not to mention the precious time we were blessed to spend with our dear, sweet friends the Enseys. Oh how I have missed my Amy!

Dr. Burton and his PA, Corbin, were so very informative and kind. I was able to stay with Greer until she was asleep, and met her in recovery. After what felt like mere minutes, we were heading back to Amy's house to sleep off the good stuff....

...or so we thought! Greer vomited most of the way from Duke to Raleigh, and we decided that next time we'll stick around till she's had a little time to sip some juice and wake up a little more. Live and learn I suppose.

We stripped her down midway home, and she spent the majority of the day in her diaper. By the time we got to Amy's she was feeling much better and asking for food.... "I HUNGY Mommy!" I took these pictures while my very drunk girl ate 3 containers of jello! She was lovin' some jello....

....and the ring pop that Corbin gave her!

....and on Tuesday, she ate gobs of pudding! But didn't she look grand....

....very little swelling and lots and LOTS of smiles! She was back to her old self in less than 24 hours. I did notice her scratching at her face more this time. I had never really noticed that before. Other than that, the healing has gone very, very well. I am already seeing some new fading (in particular, her ear.....there is NO noticeable PWS anywhere. Thanks be to God!). But she is still a bit red (and will be for another month or 2).

This picture was taken on Saturday. She is looking beautiful as ever, and we are praising God for leading us to Duke. It has been another miracle in this journey for our family and we plan to pursue further treatments there for now. Dr. Burton wanted us back in 8 weeks, but his office is booked till August. We are praying for an opportunity to go back sooner than August, but if it doesn't happen....well that is OK, too.

For it's God's timeline, not our own. He has us in His hands, and that is all I need to know!

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"

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!

THIS stage....yep, I love it!

(before you read any further, scroll down and pause my music playlist at the bottom of the page)

Greer has become pretty talkative lately. Sometimes I wonder if she'll ever quit talking....I'd forgotten about this stage. You know....

THIS stage....

Happy 2nd Birthday, Greer!

....more stories and pictures to come, but here is one of my favorites!

Just a trim for the Birthday Girl!

....I can't believe she'll be 2 on Sunday!

A trip to meet Santa....

....this is as close as I'm gettin'!

Nursemaids Elbow? A Do It Yourself, Fix-it Lesson!: A Re-Post!

About once a month, I get a random comment on a quite popular post from way back in the summer. Every time I get the email notification that there is a new comment, it makes me smile. :) I LOVE that something I have posted has HELPED a friend in need! How awesome is that!?

It seems my blog post on Nursemaids Elbow is a top hit on google....go figure! So, since I'm not the greatest at posting something new on the blog lately, how 'bout a re-post! Maybe it'll save you (or a loved one) an ER visit one day!

P.S. I had the opportunity to perform this maneuver again on Greer just recently. We were in the car with our friends, and their 3 year old reached over and grabbed Greer's arm, pulling it out of place. Thankfully, I wasn't driving, and I was able to pop it back in place right away.....I think my girlfriend was a little shocked! 30 seconds of screaming and good as new!

Click here to read the full post!

Happy Thanksgiving!

Have YOU kissed Your Turkey(s) today???

Praise God from whom all blessings flow!

Papa gets a checkup!

....all better!

God has opened a window!

We have had a busy couple of days, y'all. Greer's response to the laser surgeries seems to get easier and easier every time. Hallelujah and pass the gravy! Other than being a little grumpy and groggy and terribly hungry.....she was her same old self all day yesterday! We both ate some comfort food (aka cheese grits) and took big naps. It is our treatment day tradition!

We love our doctor here. We love the outpatient facility where she has her treatments and have actually gotten to be friends with some of the staff. They remember us when we walk through the door. The nurses cheer Greer on as she whizzes through the hallways in her flintstone car. She has favorite toys in the playroom and they have the best sippy cups ever! Muffins and coffee for me while I wait in our nice little private room with the door closed and my head bowed.

Greer shows no sign of fear while we wait to walk to the clown door, and I am confident that she is getting excellent care in the operating room. We have a great "treatment day" routine, and I am a big believer in routines. They instill trust and confidence and that's something every toddler craves. I don't want anything to change. I want to be able to continue with her treatments here in Alabama at our hospital.....with our doctor. That has been my prayer since we started weighing our options concerning treatments and what is best.

Yesterday, I had some time to sit and chat with Greer's wonderful dermatologist, Dr. T, about our plans to travel for her next treatment. If you don't know what I'm talking about, you might want to take a minute to read this post. It's a complicated situation and we are facing some big decisions about what to do next.

Dr. T and I are in agreement that Greer responded best to a laser that our hospital hasn't yet decided to purchase. But there is hope on the horizon, friends! Please be in prayer with us as we await the decision of the laser company. They are in the process of working out a lease agreement so that we could continue treatments here. This is HUGE, y'all! Pray, pray, pray! I will let you know as soon as I know something!

But, I have even bigger plans! I am thinking about petitioning the hospital to reconsider the purchase of the laser we need here. The laser so many birthmark buddies in the southeast need. It might be a big undertaking, but I'm gonna give it my best shot. What do I have to lose? How MUCH we have to gain! I'm in the process of praying it out and then I will put a plan into action (any advice would be great)!!!

On the eve of Treatment #9....

....we're ready!

Greer and I will head to the outpatient surgery center bright and early for her 9th laser treatment! Can you believe it?

Well, I can't! My baby girl is soooo strong. Stronger than me. That's for sure.

She is such a champ.

Please join us in praying for our baby girl. After all these times, it's still hard. Hard to put her through the anesthesia. The pain. The swelling. The goopey-goo. The stares.....

But.....what a blessing she is. What a blessing this journey has been. What AMAZING THINGS God has done.....

What a miracle!

Halloween 2009.....

......was soooo much fun!

We traveled northeast (...really only an hour away) to spend the day with my parents and their amazing neighbors. It was an incredible celebration, and we all had a blast! We couldn't have asked for better weather....or company. It was so much fun. See for yourself....

My little pumpkin won 2nd place in the costume contest, Lucy and Reeves got to ride in the parade, and Papa carved another amazingly "wild" pumpkin for all to enjoy! Hope you had a great weekend, too! Until next year!

Surfin' Saturday....

.....it's been awhile!

I am working today (and I worked yesterday, too).....you know how those days have been lately. So, in light of my bloggy absence, I thought I'd post a couple of links to some things that are heavy on my heart right now....

Dr. Oz happened to have a segment on his show yesterday featuring a young woman with a Port Wine Stain birthmark like Greer has. While I am thrilled that the topic was featured on a major show like this, I must admit that I was a bit disappointed by the "info-mercial-ness" of it all. Oh, how I wish he had focused a bit more on the medical impact of PWS and about other "miracle" therapies like laser and support groups. Oh well, at least he's getting some info out there!

And now, on a much more serious note, a precious little patient of my dad's went to be with Jesus yesterday. He was born with a rare disorder and many challenges, but he lived for almost 2 years.....a miracle in itself. Please read little Ian's story and say a prayer for his sweet family. Taking care of Ian over the past couple of years has been so amazingly special for my daddy and his nurse, Joan.....and I know his heart (his still healing heart) is breaking for Mary and Wae. I am lifting them up in prayer as they face the coming minutes, days, weeks, and months without baby Ian. I cannot even begin to imagine what it would be like to lose a child. If you get a chance, please leave a word of encouragement for them over on their guestbook...I know they would appreciate it!

Oh, and speaking of Joan, would you please say a prayer for her? As I type this, her mom is gravely ill. Please pray for peace and comfort for her in this very difficult time. She loved Ian and her own Mama so very much...I love you Joan!