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!

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!

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!

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!

Happy Healing!

If you think I look bad....

.....you should see the other guy!

All kidding aside, Greer had a great treatment day! In fact, it was her best treatment yet (in terms of her reaction to it). It has always been a huge fear of mine that she will fah-reak out when we drive into the hospital parking lot. Her take on the whole situation is the complete opposite of what I have feared. She claps and cheers and runs for the door. Why? Well....

They have an awesome playroom and gobs of juice and she gets lots and LOTS of attention from Mommy inside those doors.....what else could a girl ask for?

The nurses love her. They think she is just about the funniest baby on the planet. When I walked her to the OR doors, she took to her nurse right away, and it put my heart at ease. The wait was so short today (shorter than most days), and before I knew it, Dr. T came by to give me a report. She had done really well.

Within minutes, G was back in my arms, happy as a drunk skunk. She spewed some hilarious jibberish, and I honestly laughed out loud a couple of times. It made my heart smile after all these dreadful days. I love my funny, baby girl more than my luggage!

We had a great, normal day together. I've missed the normalcy. But the unknown still looms, and my daddy is still sick. My mom is stronger than any human there is, and she needs lifting up. My sisters are there and I am not and a part of me is hollow. Pray for them. Especially my mom. This is really hard.

Oops, I almost forgot....

....to mention that Greer has a laser treatment scheduled in the morning! Will you please add this to your ever growing "Megan Needs Me to Pray for This and That" list? I would so appreciate it!

Truthfully, I have such a peace about it this time around....it's not even a worry in my heart (good thing, since I have plenty of other hearts (and shoulders) to worry about)! I thought about rescheduling it, but they are so hard to fit in....I knew that it was best just to go ahead with it. So, tomorrow we'll head to the hospital bright and early. Greer will be put to sleep for a few minutes and the good doctor will zap that beauty mark away. We are so amazed at the fading she has had....it truly is a miracle! If you're new here, or you want to catch up on her story, click here (or head over to the sidebar and click on the slideshow to watch her Port Wine Stain Birthmark fade before your very eyes)!

Daddy had a pretty good day today. He is still in the ICU and we are still unsure what the coming days will bring. I haven't had a chance to talk to my mom today....it was busy in labor and delivery and we never could catch each other. My sisters told me that he was up some more and that he enjoyed a visit from his brother, my Uncle Craig. Please know that we covet your prayers and that he is doing pretty well. I will update if I get any breaking news....for now we watch and wait.

I guess that's all for now. I am totally exhausted! I know my mom and sisters have to be, too. I miss them so, and coming back into town to work and see my kids has been good medicine for me, but I am still so torn. I plan to get back up there later in the week after Greer has had a little healing time here at home. I'll update tomorrow with some before and after photos of Greer's treatment. And I would so love some prayers for her little, sweet self....it still breaks my heart to have to put her through these procedures. I just remind myself what a miracle she is.....what a miracle these laser treatments are! It's all gonna be worth it come Prom Night, right? Right!

God Bless You, friends!

Oprah?

One of the primary reasons I started this blog was to chronicle/document/share Greer's journey with her "beauty mark". She was born with what is called a Port Wine Stain, and it will forever be a part of her....

and we made the decision very early in her life to begin laser treatment as early as was safe for a baby. Thanks be to God, research came out not too long before she was born recommending that laser treatment was much more effective when started early in the life of a child. We prayed and prayed and pah-rayeed! about what to do (it was not an easy decision.....the treatments hurt like "you know what"). How could we possibly do THIS....

to our sweet, precious Greer? How could we listen to her scream as they held her down and zapped her over and over (thank heavens, it only takes about 5 minutes for her treatments)? How could we put her through the swelling, the itching, the smearing on of vaseline and aquafor....the stares and scolding of cruel strangers? How could we decide to electively put her to sleep for the procedures once she was 6 months old (old enough to receive anesthesia for an "elective" procedure.....we don't technically consider them elective, but I digress)? How could we???

This is how....

At 18 months of age (and after 7 laser treatments), Greer has had about 80% fading of her PWS (and we continue to see fading with each treatment). She has a future ahead of her that may not even be affected by the fact that she was born with a birthmark. No one notices it anymore (except after treatments), and it doesn't come up in conversations with strangers (but my close friends make sure to ask me how it's going). I no longer feel like we have to explain ourselves.....

"No, I didn't let her get too much sun."

"No, she doesn't have a rash."

"NOOOO! I didn't hurt my baby......for HEAVENS sake!!!"

And it seems someone else is interested in what it's like to live with a Port Wine Stain. Oprah has put a request out for viewers living with a PWS. And, on a whim, I decided to share our story. In hopes of bringing hope to new parents faced with the same decisions we were faced with almost 18 months ago. Who knows.....

Just like any other night....

Our day started out bright and early.  Not as early as the other times we have headed down to the outpatient hospital, but still early for my insanely great sleeping baby girl!  Of course we were running a bit late (if you know me well, you know I'm always a bit late).  But this time, I actually had a good excuse.  Reeves felt a little warm to me when I cuddled up next to him, and I made sure he was OK for school before going to snatch Greer out of her peaceful slumber.  He was fine, and I left the older two kiddos in the capable hands of my awesome younger sister, Erin (by the way, if you live in my area and need an awesome babysitter....she's your girl!).

We arrived a little after 7, and Greer was happy as could be.  It is always a relief to arrive without any signs of fear (i.e. crying, screaming, fussing in general).  I have read/heard of children who have laser treatments frequently (like my Greer) who basically fah-reek when they drive into the parking lot.  Greer showed no signs of fear or anxiety, and that gave me great peace.

We waited the normal amount of time.  For a 5 minute procedure, it seems to take forever!

Check in. Sign consent forms.  Wait to be called back.  Weight check.  Vital signs.  Change into gown.  Talk to nurse.  Sign more forms.  Talk to anesthetist.  Talk to anesthesiologist.  Play in playroom.  Drive around in little red wagon.  Talk to Dr. T.   Mark the site.  Wait.  Walk to the OR doors.  Hand baby girl off.....

But this time, that part wasn't so easy.  She cried, and screamed, and cried....

And it broke my heart....and I knew it was what 15 month olds do.  She did it at church on Sunday, and sometimes she does it when I leave to go to the bathroom.  It was separation anxiety, pure and simple.  

I got coffee....and I waited.  and PRAYED.  

I prayed for the doctors, the nurses, the scrub tech, the cleaning lady.  

I prayed for her to be OK.  I prayed for me to be OK.  It's unexplainably difficult to put your child through something like this....electively.  I always question myself, even though I know I am doing what is best for her in the long run.    

I had peace and anxiety and fear....all at the same time.

I thought about how lucky blessed I am to have a healthy child....that this is as bad as it gets for us.....hopefully forever! I prayed for Stellan and Mary and Rollins and Alan.....

Thank you God.  For we are so blessed.  For this is a privilege.  A gift.  A blessing.  The chance to give my baby girl the best life possible.

But it's still hard.  It still exhausts me.  It still hurts her.  She still needed double the normal dose of pain medicine, and she still cried and screamed in Recovery.  The anesthesiologist still had to come and get me cause he knew I could hear her screaming.  He made sure I was OK and assured me that she was OK.  And she was....especially when they brought her back to me.  

We rocked, and I sang to her.  She looked up at me....all drunk and spacey.... and I knew she was OK.  She was safe.    

And you prayed, and I prayed, and we made it home safely.  And she slept......

and slept and slept and slept.  Then she woke up....and ate and ate and ate.  And you know what?????  Tonight turned out to be just like any other night!

  

She drank her bath water.

and tried to catch the drops coming out of the faucet.

She went swimmin'  and gave me a big ole' smile!

And when she was all done, she stood up, flashed her big blue eyes...

and she begged for a bite of her brother's ice cream.

It is Well with my Soul....Thanks be to God!

Color Me Purple!

Cause Purple is the New Black!

(and on Greer, it means great fading!)

8 weeks old

3 months old

5 months old

8 months old

11 months old

13 months old

Tomorrow is treatment #7....

we sure would appreciate your prayers!

Wanna read Greer's story from the beginning?

Click here to see how far God has brought us!

(and check out the slideshow on the right sidebar)

Greer lately

It's been a while since I've talked about my kids yeah, right, so I thought I'd give a little update on at least one of them today!  Greer will be 15 months old on Friday, and I am just now getting around to posting the pictures from the photo shoot we had back in January.  I can't wait to show you some more pics from that day, but you may have to wait a few days....something very exciting is coming to the blog soon!  

So here she is, my beautifully blond baby girl.  There's not much hair there yet, but what she has is almost white!  Where'd she get that wicked white hair?  And, what about that birthmark?  Well, Greer will have her 6th (or is it 7th....I have seriously lost count) laser treatment a week from today.  She was born with a Port Wine Stain on her face/head/scalp, and if you are new to our story, I encourage you to click here to read how far we've come.  God is so good!!!

In spite of the great fading she has had, we have noticed some changes to the birthmark lately that concern me a bit.  It has become sort of mottled looking, and at times looks a lot darker than it did months ago.  I plan to ask her doctor about this, but I truly have a peace about it all.  God has brought us so far and He has been there every step of the way....I know He is in control and knows what is best.  To Him be the Glory.

Please say a prayer for us next Tuesday, it is always a bit stressful!

Other than that, things are pretty simple when it comes to good 'ole Greer (or Bubbitts as we like to call her) That is the nickname that Lucy came up with, and it's what we love to call her.  I promise to catch Lucy on video calling for her Bubbitts....it is priceless!  

She eats like a horse, sleeps 20+ hours a day....YES, I am serious, and is just about the funniest thing you have ever seen.  What is it they say about the third child?  Yes, she's ever the comedian....already!

That about sums it up!  Love you, Bubbitts!!!

Motivated

Sorry for the depressing moment in my last post....I got it off my chest and got a move on.  2 loads of laundry, roast & potatoes in the crock pot, dishes loaded, hot shower, and a good long prayer!  I feel much better.  

Greer feels much better, too!  She had a fitful nap, but stayed down for 2 hours.  She woke up fever free, and I'm praying she stays that way.  

Thought you might like to see how she's healing from her last treatment (a week ago today)!  She is looking great, and the bruising should all be gone by the weekend.  What a difference a week makes!  By the way.....green apples are my weapon of choice when I wanna get a good picture of my fast movin' girl!

Happy Tuesday!

Off to get more done!

Thankful

A 4 hour nap sure makes a girl thirsty!

Keep it comin' Charcey!!!

Dr. T got my ear good!  It's super bruised and fat!

Aunt Becca was here for the day, 

and I even learned how to say her name!

(or something close.....BayBay)

Is wasn't too bad....even though I sure do look rough!

Do you like the purple marker they used to outline my beauty mark?  

Dr. T even left her autograph....pretty cool!!!

Oh, and my eyes looked perfect!  No signs of glaucoma for now!!!

Huge Thanks and Praise for all the blessings of today!!!

Thanks for all your prayers, friends!

check out this video, but be sure to scroll

down and pause Mommy's music first

Tomorrow is Treatment Day.....#6!

Look at that sweet baby face!!!  My sweet Greer has her 6th laser treatment for her Port Wine Stain tomorrow morning (bright and early....I really need to go to bed), and they will also be checking the intraocular pressure in her eyes (basically evaluating her to see if she has glaucoma).  If you have a chance, please say a prayer for comfort, safety under the general anesthesia, peace for my spirit, and happy healing over the next couple of weeks.  We know what to expect, but we'll sure be glad when it's all over!  

Aren't you amazed at the fading she has had?  We sure are....and we Praise God for all He has done for our precious baby!  It's been quite a journey.

Checking in, Checking UP and an Aldara update

Well, here she is with Pediatrician #2 (aka Papa...which is job #1).  He would rather not take on the doctor role when it comes to his grandchildren (or children) for that matter!  He just can't handle it.....he turns into a bowl full of mush and emotion...Love you Daddy!

I've promised him that I will try not to ask him to do any doctoring for a while (stitching up Reeves twice is quite enough for him!).  He just gets to spoil them and love them, and his old buddy from residency, Dr. Israel, gets to do all the dirty work.

So today, we popped over to her office for the 1 year check-up, and it was as ordinary as any other check-up, I suppose.  She did show off all her cool tricks though, and that made a Mama proud!  She is just about the most precious baby girl on the planet if I haven't mentioned it before!  Ahem.

So, after a good round of questioning (Is she saying a few words?  Yes, Is she pooping at least once a day?  Yes, Is she off the bottle?  Amazingly...almost/basically yes, Does she eat well?  Are you KIDDING me...she is eating us out of house and home!, How much does she sleep?  Absurdly too much...is that NORMAL?  Well, she said, it's not USUAL, but I wouldn't be complaining!....Oh, don't worry, I'm NOT!)

And now....here are the vital stats:

25 pounds (93%) and 32.5 inches (still, off the charts)

I am raising a beast....a sleeping, eating, laughing BEAST!

Man, do I ever LOVE her!!!

Of interest to my Port Wine Stain buddies, I did ask Dr. Israel if she had ever heard of Aldara.  She said that the pediatric dermatologists use it all the time for treating common kid issues (like moluscums).  She said it didn't work very well for them, but she said it is a drug that is already being used on children without hesitation.  She did not know anything about the use following PWS laser treatments, however.  She didn't think it would be a big deal at all to use it.  I plan on mentioning it to Dr. Theos next time we have a treatment (a week from Tuesday).  I'll keep you posted!