July Recap...

We have had trouble with our internet, but got it fixed today.  So here is a quick recap of the activities from the end of July...

Lily did acting camp again this summer!  This is her third summer in a row and she just keeps getting better and better!  This was her fifth play!  This year's play was Mary Poppins!  Lily truly knocked our socks off this year!  Her state presence was fantastic, her voice and motions were larger than life, and her singing was out of this world!  Way to go Lily!  You sure do make us proud!!

 Two days after Lily's play, Chris and I loaded Ava Grace up and headed to Cincinnati for surgery #3.

 We got there just in time to see a Red's game!

 It was so much fun!  Ava Grace LOVED it!

 It was very hot, so Ava Grace had to cool off with some ice cream... of course!

 Overall, we had a great night in Cincinnati and went to bed extra early in preparation for our VERY early rise the next morning at 4:00 AM our time.

 Ava Grace didn't seem to mind the early hour as we drove through downtown to the hospital to her awaiting room and, more importantly, toy bag!

 As if her bag full of toys wasn't enough, the nurses let her play with all of the equipment too!  I'm telling you, this place is the best!

 They always come in and let us pick a hand made surgery cap and a scent for her anesthesia!  They have something crazy, like 37 - I think - "flavors" to choose from.  We went with strawberry, since those are Ava Grace's number one favorite food of all time. 

 There is A LOT of waiting involved when we arrive at 5:30 (that's 4:30 our time) and surgery isn't until 7:30!!

 We walked her back, gave kisses outside the operating room, and then killed a whopping 20 minutes before we were paged back to the post-surgery meeting room.  Everything went great.  She was slower to wake up this time and we beat her back to her room to be there when she arrived... very groggy and slightly drunk.

This is the nurse and student that took care of us this time!  Everyone there is so wonderful!!  It was a great experience again!!  We head back for #4 in October!

The weekend after surgery, we prepped for house guests!! My parents (Grandmommy and Papaw) and my niece Bentlee came up for a visit!!

 It was great fun to see them!  We shopped, had a birthday dinner for Aunt Jan with Chris' whole family, and did lost of visiting.  We went the Corvette museum in Bowling Green and then picked Lily up from her week at her mom's.  Lily didn't know Bentlee was coming - it was a huge surprise!  Bentlee was beside herself with excitement and plans to surprise Lily and Lily was just as excited to see her! 

 They had great fun playing American girl and also putting on a dance show and a fashion show!

 When we were kids, mom had a bunch of dresses she had saved from being in weddings and such and we had so much fun playing in them!  For that reason, I have saved all my past prom dresses, bridesmaid dresses, and dresses from other formal events.  All those dresses taking up space, finally paid off!  Lily and Bentlee did a four round fashion show complete with jewelry!  It was so cute!

 Saturday of that weekend was Ice Day at the zoo!  We, of course, had to get in on that!  We had so much fun!!!  My parents and Bentlee came along, but we also hooked Chris' parents and brother and sister-in-law into joining us!  It was fun to see all the animals with their icy treats!

Ava Grace had fun as always and looked extra cute in her new go-to-the-zoo outfit!

The last leg of our July recap journey happened this past week.  Our amazing neighbors and friends (the one's across the street that keep Ava Grace) told me about the Sumner County Fair and encouraged Lily to enter some things!  We had just made the hair bows that I blogged about in a prior post, so we decided to enter the one Lily made...

...and look who got FIRST PLACE!  Lily was SO EXCITED!  We also entered our "Peanut-butter-Brookies," but they didn't win.  We are already planning our entries for next year!

Missy's girls had several entries as well.  Among them were some photos of Ava Grace!  They got first place too!!

 We went to the Fair Wednesday for some good, but not-so-good-for-ya fair food and some rides!  We saw Missy and the girls and even got to ride a ride with Kassidy!  It was a lot of fun!  Now we are gearing up for the Wilson County Fair next weekend!

A warm welcome and chilly day in Cincinnati

 We are well overdue for an update on Ava Grace's port wine stain (PWS) and today seems like the perfect day to update since she had her second treatment yesterday!

(Toy bag waiting for Ava Grace when we arrived in Cincinnati)

We have really been round and round with the insurance company in the months between her last treatment and today.  Although they do not require pre-approval, they denied to pay for Ava Grace's first surgery.  Actually, they paid everyone except for our plastic surgeon.  We appealed and they continued to deny.  Basically their policy states that until she is having painful symptoms and negative side effects from her PWS, surgery is considered cosmetic.  So, until she is suffering from painful nodules, bleeding spots, and impaired vision (among other painful and life changing symptoms), Cigna won't help her.  There are many problems with this - the big one being that by the time a PWS patient has reached that point, laser removal is no longer nearly as effective!

(Pre-op appointment... 

blood pressure - check

heart rate - check

gold fish - double check!)

After the disturbing news and ensuing back and forth with Cigna, we were very discouraged and looking at having to save, beg, borrow, and fund raise to pay for her remaining treatments out of pocket.  That was until, a friend of ours approached Chris at work and suggested he contact the Shriner's hospital in Cincinnati.

(View of downtown Cincinnati from our hotel room)

I didn't know anything about the Shriners or what they do, but I placed that call.  I still am in awe of the conversation that followed.  It was a 3 minute phone call.  The gentleman on the other end of the line introduced himself.  He asked for Ava Grace's name and birthday and for my name and Chris' names and our birth dates.  He asked me to share with him why I was calling.  I stated that Ava Grace had a PWS and that insurance was not going to cover her treatment.  He then said that they have doctors that would love to help us and cover all of her treatment for free.  That was it.  No qualifications.  No forms or applications.  Just this:  You have a child with medical needs and we have a doctor that can help. done.

(leaving for surgery: 6:00 AM)

The Shriners have 22 hospitals across the country, specializing in different things.  We had to go to Cincinnati to their hospital there.  They are a burn center, but they also treat kids with PWS, cleft lip and palate, and other reconstructive/plastic surgery type needs. We went in January for our pre-op assessment and to meet our surgeon and schedule our first treatment with them.  We were told at that time that they will take care of all of Ava Grace's needs related to her PWS for free.  They will track her development and any follow-up treatment will be taken care of by them until she reaches age 21.  We were, again, in awe.  To add to the incredible services the Shriners are providing, we were told that accommodations are also taken care of and if we need transpiration, they will drive us there as well.

 (Morning of surgery - outside of our hospital room)

That brings us to this past weekend.  Chris stayed back to take care of Lily and Ava Grace, my dad, and I headed to Cincinnati on Sunday.  We went for a pre-op evaluation and they showed us around!  That place is nothing short of magical, with playrooms and libraries and family areas.  Each child gets a VERY large room for them and their family.  They had toys waiting for her to play with and keep.  It was great!  They checked her out and prepared us for how the next morning would go and gave us instructions for getting her ready in the morning.

I think the hardest part, by far, was not eating!  She couldn't have anything after midnight - and this girl really enjoys breakfast!  They had a room reserved for us at the Radison overlooking the river.  We tried to get a good night's rest and then headed back to the hospital bright and early Monday morning for surgery.

We had to be there at 6:30, but surgery wasn't until 8:30, so it was quite a task keeping her distracted from her hunger.  They had her little hospital gown and toys ready for her when we arrived.  She spent a lot of time playing and visiting with the nurses and her Papaw.  Every nurse on the floor spent time in our room or hanging around our door - Ava Grace was a HUGE hit and they all just went on and on about how cute she was and how they couldn't believe she was walking so well and so verbal at such a young age!  You know this Mama was proud!  

She finally got too hungry to care about toys and exploring, so the nurses took her for a walk and passed her around the nursing station and as one of them was holding her, she fell asleep!  It was great!  The doctor came to get us and she was already taking a nap, so we walked with her to the operating room doors, kissed her on her sweet sleeping face, and walked away.  (That's the hard part!)

Thankfully, the procedure doesn't take long and they only put her under with a mask for a short a time as possible.  Less than 20 minutes later we were being paged.  The recovery nurse called to tell us that she woke up immediately and was straight up mad and she needed her mama!  We met her back in our room and gave her some juice and yogurt! 

(playing before surgery)

(after surgery, eating yogurt)

We hung around for a little bit to make sure she was fully alert and was walking and jabbering normally.  She seemed back to herself and checked out great, so we were allowed to leave around 10:30.

Our nurses were wonderful!  Actually everyone there was wonderful - it was such a positive experience.  Ava Grace did so great!  Dr. Kitzmiller felt like he got good results and no over-lasering, so no blisters!

Everyone always asks if it hurts.  It doesn't hurt during the procedure because she is asleep and she gets a mega-dose of tylenol before to help with pain after.  For 24 hours, the lasered area feels like a mild sunburn. After that, no pain at all!

Here she is this morning!  Her usual happy self, rip-roaring and ready to go!

We will return to Cincinnati in June for her third treatment.  I am already looking forward to another great experience.  My new charity of choice - the Shriners and the incredible work they do to provide for the needs of children!  

Post Surgery - active and happy!

Ava Grace seems to grow by the second.  I know any parent can relate to that feeling.  It seems as if I blink I miss something!  In fact, I did.  I missed her first "official" crawl and her first "official" sitting up on her own.  Those events were witnessed by Daddy and Lily.  I was just a room away for a few moments when it happened.  It is amazing. 

Living with a tiny little person is like a great mystery.  We often wonder aloud about her future.  Will she be outgoing?  A leader?  Will she be soft-spoken like her sister or loud and rowdy like her cousin Kensley?  Will she be into sports or music?  And closer to the now, we wonder when will she walk, what will be her next word, what's the next mile stone in the path of her little life that she seems to be sprinting through?  One of the big things we have wondered about is if she'll be a climber or not - hoping not.  Kensley, my niece, is a big time climber... out of her crib, up and down the high chair, up to the top of the table.  Every time I hear the story of her latest climbing adventure I think, "Oh, Ava Grace, I hope you aren't a climber, it'll give mommy a heart attack for sure!"

One day post-surgery, we found out that she might be taking after her cousin in the climbing department. Ava Grace crawled over to and then up in her swing!  Mind you she has JUST gotten good a crawling and still doesn't get anywhere too fast.  It was quite a sight to see!  Mom and I were visiting in the living room.  One minute she was playing with her toys and the next she was climbing on in!  We were both amazed!  I have learned to keep my camera out and ready so I can catch her in action!  You just never know what she'll do next!

Those who play hard, rest hard, of course!  Tuesday was big sister's open house.  Grandmommy stayed home with Ava Grace and Chris and I both went to meet Lily's new teacher (Love Her!  Think this will be a much better year than last year.... we hope!!)  Here she is precariously perched in Grandmommy's lap...legs in grandmommy's lap and head resting on the arm of the chair.  Mom said she tried to stay awake until we got home... said she kept looking around for us me.  I have created a little monster of a mama's girl.  (Shh... don't tell anyone, but I kind of like love it!  She's so sweet!)

Wednesday, day two post-surgery, showed us that her laser circles were already shrinking!  Especially the top of her PWS where there was less overlap, you can see the dots getting smaller and the pink cheek beginning to show through.  We were so amazed that it began to heal immediately!

Above and below are both of Wednesday as well.

(Yes, we went through three outfits!)

She drools a lot and it seems so uncomfortable to be in damp soaking wet clothes all day!  So... we have lots of wardrobe changes.  Yes, there is a simple solution... I could put on her cape bib, and leave it on all day.  But then you couldn't see and fully appreciate her cuteness and girly girl outfits! 

Ava Grace has decided that grown up toys are WAY more fun that the stuff we give her.  She prefers the remote, our phones, and the dvd player (working on that one... her first "no-no.")  In fact, as I type she is literally climbing me to get to the computer.  We decided to pick our battles and we found an old remote and took out the batteries.  She loves it!  She uses her pointer finger (for everything lately and) to punch the buttons on the remote!  So stinkin' cute!

And I'll leave you with one more picture.  Thursday, we saw more cleaning and lightening of her laser marks!  Yay!

What about those eyes?  Green, hazel, brown?  We still can't decide!

Ava Grace's Surgery #1

This was a big week in the Hooper House!  Surgery, braces, school starting, whew!  ...but we'll start with the surgery for this post...

  Ava Grace had her first laser surgery to reduce the appearance of the birthmark on her face on Monday.  Prior to this week I scoured the internet for blogs and information on her type of birthmark - especially for post-op photos... very hard to find.  I wanted ot know what it was going to look like right after surgery, the next day, the next week, etc.  For that reason, I plan to blog several pictures in this post and future posts.  Maybe one day someone who is looking for the same things I was will find my blog and in it a few answers to ease there mind. 

(day before surgery)

Ava Grace was born with a birthmark called a Port Wine Stain (PWS) on her face.  A PWS is a vascular malformation.  Basically, Ava Grace has normal capillaries in an abnormal quantity.  This causes the skin to appear bright pink/red on her cheek.  If I had a dollar for everyone that has said, "Oh, honey, it'll fade, just give it time!" I think I would be a millionaire!  Some birthmarks fade, but a PWS does not.

(Leaving for Vanderbilt Children's Hospital at 4:30AM)

As a PWS ages, it will frequently become darker and pebbly or rough.  Later in life, if left untreated, they can grow thick and textured and can begin to look like a growth or deformity.  For this reason, even though we love our wild girl just like she is and think she is the most beautiful baby in the world, we decided to schedule laser surgery to treat the PWS.

(With Grandmommy, waiting to be called to pre-op)

I think the whole experience of her surgery was much harder on us than it was on Ava Grace!  The unknown was the worst part - we weren't sure how she would respond to the anesthesia and that scared us both!!  When we got to the surgical floor at the hospital we were humbled.  There was a huge waiting room full of kids and worried parents!  It was certainly eye-opening.  I sat there looking around thinking - this many kids needing surgery?  This many kids on one morning at 5:30 AM?  And I overheard a nurse say, "we don't have too much going on this morning."  WOW.  I felt overwhelmed and so thankful that we were there for an "elective" surgery and not something that seriously affects her health!  How scary. 

(Ava Grace with Daddy in her tiny hospital bed, in her tiny scrubs, playing with her tiny blood pressure cuff)

Chris and I were both nervous wrecks, but tried to put on our brave faces for Ava Grace!  She could only have formula until midnight, so I woke her at 11:30 for a bottle and again at 3:30 for a pedialyte bottle because she could have clear fluids until 4:00 AM and then nothing until surgery.  Our girl LOVES to eat, so I was a little worried, but she did great!

(Waiting in pre-op)

After we were called to pre-op, we went into a holding room where they came and took her vitals.  We dressed her in her little bitty scrubs and waited there while everyone came to speak with us.  Each member of the surgical team came to personally meet us and explain/answer questions about their part of the procedure.  We met the nurses that would be with her, the anesthesiologist, the nurse anesthetist, and then Dr. Chester herself came by to mark Ava Grace's cheek and have us sign consent.  And then, the hardest moment.  We had to hand Ava Grace over to a nurse and kiss her goodbye and go back to the waiting area.  Oh. My. Goodness.  It was so hard to walk away.  20 minutes later we were called.  I was worried something went wrong, but it turns out they were done!  We met with Dr. Chester and she told us that she felt like she got good results, kept the laser set very low, and that Ava Grace was in post-op and as soon as she began to stir we would be called to go sit with her.  It was not long before we were being led back to post-op and there was our sweet angel... barely conscious, sitting propped up by the nurse, sucking down 4 ounces of pedialyte.  We got to hold her and rock her as she finished her bottle and continued to work on waking  up and becoming alert.  About 10-15 minutes later we were checking her out and heading to the car!  The whole thing was so FAST!  We left the house at 4:30AM and were back home by 9:00AM.  I was SO impressed with the hospital and everyone there!  I also can't say enough about Dr. Chester - she is WONDERFUL!

Home from the hospital!

Ava Grace's PWS was a dark purple color after surgery.  You can see the little circles that the laser makes in some of the close up pictures.  The good news is, it didn't hurt her much at all.  Dr. Chester told us that it would feel like a mild sun burn for the first 24 hours or so and then she wouldn't even feel a thing after that.  The most challenging part for Ava Grace was letting the anesthesia wear off.  Her balance was a little off and she'd get clingy and drowsy off and on all day, but other than that she was her normal happy self!

Here is what her PWS looked like about 3 hours after surgery.  You can see her eye is a little puffy.

She took lots of short naps and did lots of snuggling!

Amazingly, her cheek feels perfectly normal.  Although it might look like a scab in the pictures, it's actually as smooth as ever.  Dr. Chester explained that the "damage" was all within/under the skin, not on top of the skin.

Overnight her eye got pretty puffy, but we were prepared for swollen shut and that didn't happen!  By mid-morning the next day she was rip-roaring-and-ready-to-go!  Emotionally I was still recovering, but she was happy as a clam and all over the place! :-)

We are so happy to have surgery #1 under our belt!  Recovery takes 10-14 days... we are very anxious to see what type of results we got from round one!  :-)  Hopefully it won't take the 10-14 treatments that our dermatologist predicted!

I would also like to thank Mama for coming to help us out!  She went with us to surgery and babysat all our stuff in the waiting room for us and she stayed home Tuesday night with Ava Grace so that we didn't have to take her with us to Lily's open house.  We can't thank you enough, Grandmommy!  You were (and always are) such a huge help!

I have lots more pictures to share from this week, but my computer has decided not to load them and I am ready for bed (yes - it's not even 9:00 yet, lol).  I'll try to load more picture tomorrow, but for tonight I am headed to the bed!  :-)