Day at the Museum!

The day started off with a trip to Dr. Waner's office for a post op check in. In the Dr.'s words "I think we hit a home run this time". We are all very excited with the results of surgery and are just praying for a good recovery. The rest of the day was spent at The Museum of Natural History and what a day it was. We got there at 10:30am and closed the place down at 5:45pm. Definitely a great place to be when the high for the day was 24 degrees. Thank you for all the prayers. God is Good

Surgery day- what a day!

        Today was the day, Sarah's first surgery in three years. 

Overall? She did good. She couldn't eat or drink since last night and boy did she get hungry at one point.

      Sarah has had the best spirit- no complaining, always a smile (95%) of the day! Needless to say in a nut shell, we are very proud of the way she handled today. With the odds stacked against her she shone through and handled it all with grace.

    This morning started out normal enough besides the fact Sarah couldn't eat, we just hung out here, and stayed quiet- Sarah got to FaceTime with a friend of hers to help her pass the time and that in itself was a blessing! Once we got over to the hospital things started moving pretty quickly and we found ourselves in pre-op in no time. Sarah had a surgery ahead of her that ran a little longer than planned, so her 1:30 surgery time came and went...a few hours over due. 

    This whole time Sarah and I for the most part stayed cuddled up in the armchair watching her favorite comedian on the phone- or random funny videos. She would get up stretch, play around with daddy and then climb back in the chair with me. During one of her cuddles she started telling me she was getting very hungry and she started naming all of the foods she wanted to eat when she was done for the day. About this time daddy looked up and said Dr. Waner is coming! He rounded the corner with his team and talked to us for a minute and then the team started looking at Sarah again, checking  the scars, having her smile, relax her face, smile again- marked where they wanted to check, discussed amongst themselves and would descend on Sarah again to discuss. This was all necessary and needed to be done but it struck me that it had to be the most intimidating thing for a kid to look at! I was sitting beside her holding her during this and - (humor me) just imagine sitting in a chair, looking up, and three doctors are bent over, talking, messing with your face, all wearing blue, marking on your face and even at one point having a slight disagreement as to which should be done. 

Now that's quite a bit to take in for a 9 year old! At this point when they left to get ready for her she curled up and started crying a bit and telling me she was hungry and she just wanted this to all be done. To have gone the whole day with such a good spirit and to have lost it for a few minutes at this point, I think she did a good job. I suddenly realized she fell asleep for a few minutes and then it was time for her to get ready for Daddy to take her back to the operating room. 

     Fast forward to post-op and this little girl did not want to wake up! She woke up for about 30 minutes and then after fussing at me about not getting to go to the museum yet she fell back asleep for HOURS! Myself and a couple of nurses and someone from anesthesia finally got her to open her eyes and talk to us! The stink pot was just tired and decided to take advantage of the situation! Haha

      Once she was up, she sucked down her apple juice, some jello and the highly demanded and requested oreos (she only ate the cream part)  and asked the nurse where she could get a taco! 

Our nurse when Sarah was discharged even walked us out to the corner while pushing Sarah in a wheelchair to point out the closest and best taco/burrito place on the block! And once there the Burrito lady even demanded to buy the girls their tacos after meeting Sarah! After the day Sarah and the three of us had, it was a pleasure to see kindness come out in those ways!

      Sarah is now settled in the apartment, has ate her way through her taco, half of her sisters, some chip chunks, and some leftovers from last night! 

We have to be up and at them in the morning for a 9am follow up with Waner so we are calling it a night. Thank you all for the prayers, texts, and thoughts throughout the day!

God is good.

-Mama

Pre-Op meeting with Dr. Waner...

        Well today was Sarah's face to face with Dr. Waner. We sent pictures up months ago so he could get a look at how her progress has been but pictures only give a half truth in matters like this. As usual Dr. Waner was his usual kind, and caring self which helps put everyone at ease and always makes sure to give his patients the time they need so things can get discussed in detail and all questions answered. To me, (mama) he is such a balm to the nerves that are a little more frayed and worried than usual. He has had Sarah since she was four months old and we have 110% confidence in his knowledge and skill in knowing how to care for Sarah.
       We came up prepared for a surgery on Thursday. Well we giggle- because we always get some form of a "Waner surprise" as we like to call it, it has ranged from an emergency on his behalf and not knowing if surgery would happen, to things that while she is asleep on his table that he will see something that needs to be done and he will go ahead and do it and we won't know until she is in recovery, to changed times or like today- her surgery was bumped up to tomorrow! Which for us that means she will have a longer period of healing time here in NY under his care before we go home. So that's a good thing!
        There was a preliminary email and discussion as to what he wanted to do for her, and it has slightly changed some but not too much, he got a look at her today and said she still has some residual tumor left around her right eye in her eyebrow area- once she's asleep he will look at it in depth and see what he can do about it. He will also work with her scarring and help give some relief to that and work on the scarring in her lips. Sarah handled it all with ease and a smile and even asked Dr. Waner a few questions herself. Chuck and I are just so proud of her and how she is handling this all. We will update tomorrow evening after we get back here and settled- her surgery is planned for 1:30 so please think of her, the doctor and his team tomorrow.

Now- Sarah got to go to her all time favorite place here in Manhattan- Stardust Diner! It is Sarah's rule that she gets to go at least once while here or else! (And that is perfectly fine with mama and daddy because she deserves it!) If you ever find yourself in NYC, make sure you go! The waitstaff sing while you eat and it is amazing! Today they pulled out ALL of the extras and performed the best we have ever seen! A lot of the staff find themselves starring in Broadway plays and performances etc. so it's fun to see the talent before they make it to the big stage. They walk around singing, get up on a walkway and perform- dance around, you name it. There is never a dull moment and it's a true joy for everyone of all ages. Sarah enjoyed herself immensely and it was a joy for us to see her and her sister have so much fun during all of this. Riley has been a great little support system herself with Sarah, praying for her when she volunteers to pray over meals, and just being there for her in general so far. I have no doubt she will kick it up a notch tomorrow like she has in the past. So thankful for a sweet sister for Sarah.

A few pictures from today:
Rockefeller Christmas Tree, Stardust Diner, a random picture the girls wanted by the fountain and giant ornament balls (that Sarah said she could decorate with ease- lol), the amazing Dr. Waner and Sarah, and Yeleana and Sarah- his PA that's been with him for years. (We love her!)

Please continue to pray for Sarah, Dr. Waner and his team tomorrow! We are very thankful for all of them!
God is good.

- mama

We made it!

We are safe and sound in NYC! When we were boarding the airplane in Charlotte I overheard someone call the gentleman in front of me Captain, I asked him if we he was the captain of our plane in which he replied "yes I am". It went from there and the girls got the first class tour of the cockpit! I think it made them feel better about flying. God is Good!

Tomorrow/ Today is the day- catching the flight, maintaining grace, patience, love and saying more prayers!
      Sarah is doing well with the building up to this week, there have been a few tears, hugs, and one melt down, which was quickly resolved with love and prayers.
      If you know Sarah well enough then you know she has an extended family- and she has spent almost everyday with this extended family at the tree lot since Thanksgiving. The other day was her last night and when she realized that; it was a hard pill for her to swallow, but God sent a few blessings her way, hugs and love from the "grandpas" that were there, and a surprise visit from one of her newest friends she met this year and they clicked instantly- many games of Christmas tree hide and seek, hugs and laughter couldn't of ended her night any better. These men and women who have all opened their arms and wrapped them around Sarah...we thank you, and we love you. You are what we call some of Sarah's "earth angels".
      Like I mentioned in the previous post, it's been three years...we have an idea of what will be done, a plan that was discussed- but until she gets her face to face with Dr. Waner on Tuesday then that is all subject to slight changing and tweaking. We have had a lot of questions which is normal, but the one I'm getting the most is- is this just cosmetic? Well no.....and yes?? Sarah has a few knots of scar tissue, they hurt when they get hit or bumped around her eye. She also has a large scar running down her face, from her eyebrow down to the bottom of her nose. This scar is tight, and it's getting uncomfortable. (We have tried many different oils, creams and gels to help) I will find her rubbing it while watching tv because its growing tighter as she grows. He will probably do a heavy duty laser treatment on it to help it soften up since she has grown. She also has lost feeling in a good portion of her face due to the amount of surgeries she has had to remove her tumors over time, he can't fix that but treating the scar some will help with the tightness and uncomfortableness she is experiencing with it. He's going to work on a knot of scar tissue by her eye and her eyebrow, and her lips have knots of scar tissue in them, so he's going to work on that for her. Other than that? We aren't 100% sure until he gets to see her in person on Tuesday. So the answer is: No, this is not a strict cosmetic only surgery, it is most definitely needed. But his goal is to work on her through her life to where as she grows her skin is not pulling and that it's doing what it needs to do in as natural a way as possible.
Its just something that comes along with what she had- these hemangioma's were aggressive and grew fast, so this is just another step in the process.
 
Thank you all for the prayers, we have definitely felt them and please keep them coming!
(And once I figure out how to add an updated photo of her...I will! Haha)
-Mama

It's been Three years...

Well, like the post title said...Its been three years.
She was six- now we have a nine year old. Her being older can be a positive or a negative factor; will she be able to understand everything better? Will she have more fears? How will this go? There is only one way to find out... We will let you know.

We have been doing "check ins" with Dr. Waner for the past few years, he looks at pictures, sees how she is growing and makes a decision. When I sent this last batch of pictures I just knew in my gut this time the answer was going to be "Its time.". We were shocked still when we got the email because it's been a while, but it quickly turned into getting things lined up for this trip. As usual like in the past we had three months to get ready. Things are lining up, Blessings are happening and time is ticking away fast. We have a short 8 weeks before we jump on a plane and head back to Manhattan.

Sarah is busy herself  getting ready for her trip! For the past few years Sarah has been helping Hometown Heroes sell Christmas Trees at the tree lot, and she has been handmaking ornaments to sell while she's there! Everything she makes and sells, she turns around and gives HTH a check with all the money she raised! She loves going and it's her goal every year to give HTH $1,000. So she is planning her ornaments and is getting ready to start cranking them out so she can get a head start since she will be gone a full week out of her "selling season". (If you don't know, Hometown Heroes is the organization that has been with Sarah from the very beginning helping us make sure she has what she needs for NY. They hold a huge part of our hearts and we love them dearly.)


We will keep you posted as the surgery time gets closer, but in the mean time please pray for Sarah, her Dr.'s, good healing, and safe travels!
- Mama

Last night in NY!

Well we went to the Dr's this morning and we're told to stop by tomorrow before we leave just so he could check on Sarah's swelling. We took the girls to The Museum of Natural History this afternoon for some education and trick or treating. We stopped by the famous Magnolia bakery for a cupcake afterwords. Kim made a picture of Sarah's first trip to Dr. Waner along with this trip. It put things in perspective for me and reminded me of how far Sarah has come. I am blessed

God is good

Surgery went well!

Surgery went well, Dr. Waner once again did a wonderful job. He took out almost all of the scaring on her cheek area and did very aggressive laser on the rest of her facial area. Kim and I usually fast with Sarah on surgery day then grab something while she is in surgery but today, because of some miss communication, we fasted until we got back to the apartment this evening, which meant tensions we're high, aka snippiness was our challenge! Sarah is resting in the bed after many glasses of Apple juice, pepperoni pizza and some cake. She has fallen in love with an app. called Cakedoodle and it has been worth all $.99. Riley became nurse Riley, so proud of her. We are all done, here are some pics, first is Sarah and I going back to surgery, next is Sarah and mommy right after surgery and last are the girls queening it up at the hotel.

2 years since our last visit to NY

We are back in NY today. We have met with Dr. Waner and surgery is set for tomorrow. As we we're walking back to the exam room Riley said "Sarah are you scared?" Without skipping a beat Sarah said "no, I'm not scared."  The strength of her makes me proud! Dr. Waner told us tomorrow he will map her face and then come out to tell us what he will be doing, can't help but have trust in him, he has done so much for her. God is good!

Time for a Recent Picture - Sarah with her sister Riley 2013

Day of Nothing....much!

Since we all had a big day yesterday, we have decided to stay in, or really close to the apartment!Sarah's swelling is down as posted before, and guess what!! So far today she has NOT NEEDED any pain meds! That in itself is wonderful! Our friend Kris was able to get Sarah to forget about her face and stitches for a while (shes been wary of smiling really big and talking a little stiff like) and he was getting her to laugh big belly laughs and smile really big! Big Thanks to Kris! 
Oh, had to share this, a friend of ours told us before we left for NY to ask for an oral medicine before surgery to help her relax and not be so upset over going back into surgery. Boy was this THE TICKET! The hospital called it "goofy juice" and we know why! She was hilarious! She started giggling, and picking with us and just being an all out silly little girl, she wanted me (mama) to take her back this time and when I laid her down, she did nothing but giggle, I asked her is she was being a silly girl and she shook her head and said "oh yeah!" giggled herself right to sleep. We don't want to think about how hard it would have been without that, so a big thanks to Kim G. back home!
So far today it has been very lazy here...shhh we're all still in our PJ's!! Were thinking about taking the girls to the park again and another picnic.
Our day yesterday was really nice to catch up with our friends, and the weather here has been great, even a little on the warm side! We were actually looking forward to some cool weather here but what do ya do?!
God is Good!

Statue of Liberty and 9/11 Memorial

Today we met with our friends Valorie and Kris. Met them at Penn Station and we went on a ferry ride around The Statue of Liberty, Ellis Island, and the Brooklyn and Manhattan bridge. This evening we went to the 9/11 memorial, it was an emotional experience to say the least. The swelling on Sarah's face has gone down considerably and she isn't in as much pain now. We're all tired. Good day. God is good.

Central Park

Today we went to adventure park inside central park. The girls got on the swing and the slides for about two hours. After, we sat down on one of the lawns for a snack and some rest. We walked down to the famous candy shop for a bag of yummy gummies. Back at the apartment, sarah's writing some thank you cards to her friends and daddy's gonna go do some laundry. Good day overall. God is good

Zoo Bound!

We went to the Central Park Zoo today  per Sarah's request. Now that she's older and more aware she's been asking question's and we have been answering the best we can. You can prepare yourself for the trip, the surgery, and the unrest but it's hard to answer the "why" questions. Today went well though, we just kept her busy so she didn't have time to think about it so much, good thing we're in such a busy city with plenty to do. The hardest part would be the looks people give and the restraint required to ignore it. I have to remind myself that if I react badly Sarah will think something is wrong with her. My flesh and my heart faileth; But God is the strength of my heart and my portion forever (Psalm73:26)
God is good!

Thursday night chillin!

Sarah and I thursday night, for the record I got the first post surgery kiss. What can i say, dad rules.

Big day for surgery!

Sarah had her 1st surgery in a year today. I don't know if Kim and I are out of practice or this surgery was a big one. I think a little bit of both. Surgery went well and we have all had time to rest. Dr. Waner took out most of the scaring on Sarah's cheek and fixed her lip. When the swelling goes down I think you'll be able to tell a big difference. In this picture, she was coming in and out at the moment and I just snapped a quick photo. God is good

Ferris Wheel bound!

Friday we went for a walk down Broadway and went to the 3 story ToysRus. Sarah found the giant ferris wheel in the middle and wanted to go for a ride so Mommy and Sarah went while Riley and I watched. Yesterday we went to David and Debbie's house for lunch and afterwards went to central park to play. David and Debbie are friends of ours that we met up here at Dr. Waner's office. Here is a picture of Sarah on the ferris wheel and a picture of us in the park.

In the Park

Yesterday was a great day! The weather was perfect so we spent the day at central park, one of our favorite places! We took the girls to the zoo and then found a grassy area with large rocks and spent the rest of the afternoon playing and relaxing in the shade! Riley took that chance to lay back in the stroller and nap in the breeze! Sarah used her wonderful imagination to entertain us with songs and skits...we thought we would put one up of her singing....Enjoy, God is Good!

Breakfast of Champions

This morning I got up and made bacon,egg,and cheese bagels. I asked Sarah if she wanted one and she said "no daddy I want some pizza" well we had a slice in the fridge so Sarah had a very healthy breakfast.Ha.
She is feeling good with just a little bit of pain from the stitches. Here are a few pictures from this morning. The red area on her face is from the fraxil laser and it's shiny because it's slathered with bacitracin ointment.
God is good.

Surgery was Successful!

Today was surgery day and was very successful. Dr. Waner was able to take a good portion of scaring out of Sarah's lip and bring the lip out some to help make her bottom lip look more full with what he described as a certain way of stitching it up. Dr. Waner also did some fraxil laser to help smooth out the scaring on the rest of her face. Sarah woke up from surgery the best a three year old could wake up from surgery and after some serious promising and bribery we were able to get her to drink some pediolyte and eat some crackers. We arrived back at the apartment a few minutes ago and all in the Porter house are in need of a nap. Thank you for your prayers and would like to say a special thank you to Hometown Hero's back home. Here is a picture of Sarah post surgery and a picture of Sarah with Dr. Waner a few minutes after surgery.

Back in the Big Apple

Today we flew back to Manhattan for another surgery for Sarah. Our flight landed around 10 am and we were in Dr. Waner's office by 11:30 for a visit with him before surgery. We got a picture of Sarah and Dr. Waner which is one of the few one's we have of them together. After the Dr. looked at Sarah she told him thank you, when he went to shake her hand goodbye she went and gave him a big hug. I think it caught him off guard and was pretty cute. Surgery is tomorrow and is scheduled to start at 10 am. Please pray that surgery goes well and that the Dr. does the best possible job he can. God is good.

Stardust Diner...day after surgery...

Sorry this post is a little late, we realized we had forgotten to put this one on! Sarah did very well this morning getting her stitches switched, talked to Dr. Waner, and he doesn't know what the next step is until we send him some pictures in a month to see how well she is healing, so we will find out later.
But she did well, a little grumpy girl, but shes doing much better!
But we did take Sarah to the Stardust Diner the day after her surgery...and of course she enjoyed it! While the wait staff was getting the music ready to play for the next song, Sarah took that opportunity to sing herself! One of the waiters started to joke that he was going to take a microphone to Sarah! She was singing so loud and having a ball! She did it in between all of the breaks! Her songs were "ABC's" and "Old McDonald!" Here's a picture or two while we were there!

Out and About...

When we come up, we always try and do things for Sarah, at least something everyday, when the weather is warmer, we go to the park, and the Zoo, etc. But when its cold we have to find different things to go and do inside...so today we decided to take our candy loving little girl, to the very popular and famous "Dylan's Candy Bar" it's not much different from other big candy stores, but its neat and has some really cool things, and its been around for a VERY long time! Sarah was in love! She started to walk around just touching the bins full of candy and looking at everything, and then when she figured out we were letting her pick some candy to go into her bag...well that was all she wrote! She really enjoyed it, and it was a cute place to go and do something for the day! On the way back, we stopped to meet a few of the horses that line up with their buggies waiting to take people on a carriage rides...Sarah and Fredia Joe (the horse) really took a liking to each other! On the way back, right as we were walking up to the apartment building, i looked up and saw Sarah fast asleep on top of Chuck's shoulders! It was a nice day to get out and walk around!
Sarah goes back in to get her stitches switched out in the morning at 8 a.m. Please pray that all goes well, and the pain afterwards isn't too much!
God is Good!

Snow day Continued...

Well we took off with the girls in their "bubble cart"! They were so snug and warm all bundled up and protected from the wind...it was so nice knowing they were comfy enough to both take a nice nap before the museum. It was very interesting to go, we got to see the Titanic exhibit and the Leonardo DaVinci exhibit. I mostly wanted to do this little blog entry just to show you some neat pictures...i took some really neat ones so its going to be hard for me to pick just a few! Thank you so much for praying for Sarah! Enjoy the pictures! Chuck pushing the girls...and a little lady feeding "her" birds! It was so cute! And a picture of the stroller, with the girls asleep inside once we got to the museum...the cover was covered in snow!!
God is Good!

Wednesday is Snow Day

We woke up this morning and already had 3 inches of snow on the ground. We are supposed to get up to 18 inches total which is fine, as long as we can leave Saturday. Friday, Sarah is going back into the hospital to get her stitches replaced with dissoluble stitches for the trip home. Today we are going to try and go to the Discovery Time Square Expo and see the Titanic and DaVinci exhibits. The Expo is only 15 blocks from where we are staying so we think we can make it. This is a picture of Sarah at Magnolia Bakery Yesterday. Her chin looks so much better.

Surgery Day...

Today was a little different than the other surgeries that Sarah has had...instead of going early in the morning, we went later in the afternoon at 12 to be there for her surgery at 1. It was different because Sarah had to go most of the day hungry, instead of sleeping through most of the hungry part! She did good though...
They called us back to pre-op a little after 1:00 to get Sarah ready, and Sarah, Riley and Daddy sat down to watch some Veggie Tales on the DVD player we brought with us! So cute!
When getting dressed in her gown to go back the the operating room, she wanted to keep wearing her tutu! She was so cute...and I'm sure the most fashionable little 2 year old back there in a hospital gown!! (Chuck takes her back, so he took it off for the surgery once she was asleep)
Surgery lasted a little over an hour and Dr. Waner came out to tell us how it went, at first Sarah was supposed to get dissoluble stitches that we could go home with, but when Waner started working he realized that the plan of what he was going to do and how he was going to do it needed to be changed, so she got regular stitches, and on Friday we are going to go back, and they will do more laser (they did some today) and take out the regular stitches and replace them with the dissoluble ones; for us to go home with.
Sarah bounced right back, and was drinking her juice out of a cup and eating goldfish in no time!
Thank you all for your prayers, and love!
God is Good!