Thursday, December 15, 2016

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

Wednesday, December 14, 2016

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.

Tuesday, December 13, 2016

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

Monday, December 12, 2016

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)

Wednesday, October 19, 2016

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