39+11=50; Our trip to Boston and Cape Cod

I am finally catching up with my blogging and able to post about our August trip to Boston and Cape Cod.  It was our last of three trips to Boston Children's Hospital to finish the clinical trial that Anna is enrolled in called "Early Diagnosis of Autism in Children with Tuberous Sclerosis."  We had to be in Boston for three days for Anna to finish her testing and we decided to extend our trip to visit Cape Cod for the first time and escape the hot summer Texas heat for a little bit longer.

 

You may have noticed my title 39+11=50.  What significance did the number 50 play in this trip you might ask?  Did we collect 50 shells on the beach?  No.  Did we see 50 whales on our whale watching trip?  Not even close.  Did the kids ask us 50 times if they could have ice cream again.  Nope (well actually, they might have come close!).  Did we find out that Anna had 50 different brain tumors? Yes!  Say what???!!!???  Our sweet Anna Jayne has 39 tubers throughout her brain and 11 nodules in the ventricles (fluid filled spaces) of her brain which equals 50 different tumors!  Normally a neurologist wouldn't sit down and count all of these individual tumors, but with her being in this study they want to collect as much data about each individual as possible and we had been anticipating finding out how many she might actually have. 

 

How did we react to this information?  Honestly, we didn't even blink twice.  It is a huge number of growths but it proves that this disease is so unpredictable.  A child with one tumor could have uncontrollable seizures, severe developmental delay, autism, and the list goes on.  Our Anna, who has 50, hasn't had a seizure in a year and a half and isn't even on any anti-seizure medication (knock on wood), is on track developmentally, and we know she doesn't have autism.  This is a true miracle, awesome luck, and oh my goodness it just has to be a blessing straight from the big man above!

 

Anna had to be sedated for her annual MRI the first morning that we were there.  She was released about noon and the nurse went on to say that she will be very tired the rest of the day and may need a nap or two.  We took her back to the hotel where her and Emma were completely bouncing off the walls.  We wanted for her to rest, but we know Anna, and the girl doesn't know how to rest.  So we decided instead of sitting in the hotel all afternoon we would go to the Baltimore Aquarium.  She had testing the next day as well and in true Davis fashion we tried to fit in a few fun things in Boston before we left.  We visited Boston Public Gardens and went for a swan boat ride, had a yummy meal in the North End Italian District, and saw Fenway Park.  We have grown to LOVE Boston - it is a beautiful city with gorgeous parks and so many fun things to do.

 

Anna got rave reviews on all of her testing.  Her MRI showed that none of her tumors have grown or changed over the past year, which is ultimately what we will hope for every year.  She also scored average on all of her developmental testing - meaning she is average amongst her normal, healthy peers in all the areas tested (language - both what she understands and says, visual reception, fine motor coordination, and gross motor coordination).  Average amongst her healthy peers!!!  Mom and dad could not be more proud of her and thank God every day for how awesome she is doing!!

 

 

Getting ready for her MRI.  She was SO MAD that she had to wear the hospital pajamas and that she had to take off her "pretty dress."  She did not want to wear pants:)

 

Boston Aquarium

 

 

 

Oldest restaurant in the nation.  We had some amazing seafood!

 

 

Just waiting for Metro with my new purse!

Watching the ducks at Boston Public Garden - the park that the famous children's book "Make Way for Ducklings" was based off from.

We finally took a Swan Boat ride.  Every other time we had been to Boston they were closed down for winter.

 

 

Of course the girls had to pretend to ride the duck statues before we left.

 

Overlooking Fenway at a bar that we had a drink at after the game was done.

Fenway Park.  Notice how excited the girls are - this was definitely more of a dad thing!

We then drove to Cape Cod to spend the rest of the week.  We had never been there before and were super excited to check it out and relax a bit after Anna's testing was finally done.  Our resort had really great reviews online and was quite expensive, but less than stellar for Jay and I.  It had really nice amenities, like an indoor and outdoor pool, huge beach, free beach chairs and the list goes on but the rooms were OLD and a bit smelly.  We think that most places are a little like this though because they are completely booked  in the summer and don't need to spend money on many updates because there is such a high demand overall for Cape Cod!

 

We had one really rainy day where we drove all the way to the tip in Provincetown.  We checked out a couple cities and really liked Chatham and Hyannis.  Cute towns with lots of shops and unique restaurants.  We did not expect the horrible traffic that we ran into everywhere!  Want to go get ice cream?  Expect to sit in traffic!  The girls loved the beach and had an awesome time searching for shells.  They seriously LOVED looking for cool shells to bring home.  They also enjoyed swimming in the ocean and at times just wanted to swim in the pool.  Kids + water = sure to be a good time!

 

We also booked a whale watching trip while we were there.  It was an hour and a half boat ride to get out to the whales, which was quite long, but the sight of a whale in the wild was just AMAZING!!!  We only saw two different whales but sat and watched them for 30 minutes or so surfacing every few minutes.  Emma was enthralled and Anna pretty much didn't care after the long boat ride to get out to them.  Although she still talks about it.  Whenever we see a dolphin or whale on TV or a book she says "Wook mom, just wike we go whale watching!"  It was an awesome experience for sure.  By the end of the week were very ready to get home.  It gets hard to have to eat out every single meal for an entire week with two little kids.  We had a mini fridge in our rooms so we were able to keep milk for our morning cereal but going somewhere for lunch/dinner daily became exhausting.  Cape Cod is beautiful and we are very glad we got to see it while we were so close, but not sure we are dying to go back anytime soon!

Our resort from the beach

She could have searched for shells all day long!

A rare picture with mom!

Silly dad!

Boat we took to see the whales

We were so close!!

Emma swimming in the ocean.  She was scared to go too deep because of the sharks so she was trying to "swim" in super shallow water.

Showing off her beach finds

 

I have a million pictures of either Anna or Emma licking their lips from the salt water:)

Jay is in Vegas this weekend for his annual trip with his college friends.  I am home with two sick kids - Anna is recovering from croup and Emma has come down with a fever and sore throat as well.  We are having a great time here:)

We have also been trying to get down to the bottom of Anna's acid reflux.  I have been to Houston three times with her to visit the GI specialist associated with the Tuberous Sclerosis clinic there.  He thinks it is a problem totally unrelated to her TSC (lucky us!).  She has had it since birth and used to projectile vomit every feeding as a baby.  It has slowly gotten better over the years but she still has food come back up into her mouth throughout the day.  I know this could cause long term damage to her esophagus and teeth so we are trying to figure out what is going on.  In another week she gets to be sedated for an upper GI endoscopy.  Her doctor wants to look and see if he can see any problems that would cause this and take a biopsy of her esophagus, stomach, and small intestine to see how inflamed they are from the reflux.  Then he is going to put this catheter down her nose and into her esophagus and keep it there for a day!!  It is going to measure how often she has the reflux and how acidic it is.  That will help him prescribe the right dose of Prevacid to help her poor esophagus.  This tube will be sticking out her nose for the day and we hope she doesn't pull it out!  She gets to come home that day and then we drive all the way back the next day to have it pulled out.  Poor baby!!!  I already feel horrible that we have to do this and just want it to be over.  I know it is what is best for her though.  And now that we have a kindergartner, Jay has to stay here to take her to school while I take Anna alone to be sedated.  That's a bummer!!  Anyway, say a little prayer it all goes well and I will keep you updated!

Sorry this turned out to be a book!  Enjoy your weekend!

Back to School - Kindergarten and Preschool

The long anticipated first day of kindergarten has come and gone.  Emma had been looking forward to being an official kindergartner all summer, and mom had been dreading the day all summer.  I'm not sure why I was dreading it so much.  I mean there are plenty of days around the house where the girls are doing nothing but fighting over toys, arguing over which movie to watch, complaining about being bored, and giving me the normal lines of "We NEVER get to....... (insert favorite activity)."  I just know that my big girl, the one who introduced me to the best gift ever - being a mom - just over five years ago, was about to fly the coup.  No, she wasn't going off to college or getting married and moving across the country (sorry mom) but she was going off to big kids school.  She would be spending more time with her teacher during daytime hours than with me and that alone made me sad.  Super sad. 

 

I suppose I just love having her around the house.  Listening to her make believe games, watching her dress up, watching her dance, or just getting a glimpse of her whenever I please.  She makes me smile and laugh and is a great entertainer for her little sister.  I knew she was ready for kindergarten, though.  And in my heart I knew it was what was best for her.  It is just kind of hard to let go.

 

OK - enough being sappy.  Despite being super sad the day before kindergarten (on the day we celebrated Anna's birthday) I held myself together quite well on the big day.  I think I had gotten it all out of my system.  Oh and I suppose you want to know how the actual kindergartner did?  She did awesome!  Jay and I took her to her first morning and she was SO excited!  She ran right into her class and started playing with a puzzle and another girl.  She basically had to tell Jay and I it was OK to leave and we left her happy as can be - looking all grown up. 

 

She LOVES school.  She LOVES getting homework.  Oh how those days will change!  The only thing I wasn't prepared for was how utterly exhausted she would be from kindergarten.  More tears in those first two weeks than the last two years combined.  I know she does great at school but she loses it the minute she walks through the door!  She cries for no reason such as "I just don't know what toys to play with!!!!" or "None of this is making any sense to me!!!".  Sometimes she literally sounds drunk saying stuff that makes no sense whatsoever.  I guess full day kindergarten is a lot to take in for her and will take some time adjusting.  We are in week three now and she is slowly getting better.  

 

 

 

Playing with a puzzle

She is a Regina Howell Charger

Cookie to celebrate finishing the first day of school

 

Completing her first homework

Anna was also beyond excited to start her first year of preschool.  Like I have said before, she likes to do everything her big sister does. She couldn't wait to wear her backpack like Emma does!  I was a bit nervous on her first day because I had no idea if she would run off and be happy or have lots of tears when I left.  Turns out that she is exactly like her big sister and she ran off into her class so excited.  I had to even call her back to get a hug goodbye!  I actually left her class a little teary eyed because she surprised me by being such a big, independent girl!  She loves going to school and can give me bits of information about her day too since her speech is improving so much.  She tells me she loves to play dress up with the girls, loves the playground, talks about a boy named Brody all the time (look out dad!), sang a song called "Rockin in My School Shoes" and even told me she made a purple handprint!  Why do kids have to grow up so fast?

First day school pics were a disaster for Anna.  My camera lens kept getting all foggy from the crazy humidity and by the time I pulled my phone out she was over it.  She looked super cute anyway!

 

 

 

Her backpack is bigger than her!

This last video is Emma showing off how she can tie a shoe!  This was her homework over Labor Day weekend.  I have worked with her in the past and she didn't have any interest in learning.  When it was labeled "homework" from her teacher she couldn't wait to learn!  It literally only took 10 minutes and she had it down pat.  She is already learning so much! 

 

Anna's 3rd Birthday

 

I can't believe that Anna is officially three years old!  Her birthday was last Tuesday and since Jay had to be out of town for work we celebrated it on Sunday.  This was the day before kindergarten started for Emma (more on that to come) and needless to say mom was a bit frazzled!  I had a hard time getting in the celebratory mood when I knew my big girl was starting elementary the next day (which I was super sad about)!  Grandma was in town for the festivities and we had a party with just the family.  Our original plan was to go to a local water park, but rain dampened our plans yet again.  (I think Anna has had rain on all three of her birthdays always requiring a back up plan!)  Luckily, she was super excited about plan B, which was going to see the movie Planes.

 

We started the day with some pancakes and our birthday tradition - to wake up with balloons covering the birthday girls bedroom floor.  Anna and Emma immediately started playing with them and before long they were ALL over the house.  We then went to see Planes, which both girls loved, ate popcorn at the theatre for lunch and came home to play for a few hours.  Anna chose chicken nuggets for dinner, along with Ariel decorations (because she wants to be just like her big sister in every way possible and Emma also had an Ariel party.)  We had cake, opened presents, had a bath and an early bedtime for Emma to start school the next day.  It was a relaxing, low stress kind of birthday but yet very exciting for the birthday girl.  She had a great day!

 

Balloons that escaped Anna's bedroom floor

 

 

Her cheesy smile that I get ALL. THE.  TIME.  It ruins millions of pictures but I secretly love it every time.  She is so silly.

 

 

 

 

Anna got her very own Bitty Baby and pajamas to match Emma. Girls loved all matching!  "Wook mom, we're twins!"

 

On Anna's actual birthday we celebrated by taking her out to lunch at her favorite restaurant Jason's Deli. We also went to the library because she loves to pick out books and DVD's.  We also saved one last present for her - a Tinkerbell dress with light up wings and wand.  She loved it!

Loving her new Barbie and Unicorn

Anna and Grandma

Mommy and her three year old!

Jay and I are so very proud of Anna and how smart she is despite all of life's obstacles facing her at three years old!  Her speech has really taken off over the past couple months and she can really communicate and interact well.  She has also gotten better at not having major, massive, uncontrollable meltdowns when she gets angry.  The more she talks, the more she uses her communication instead of throwing tantrums (Hip hip hooray for that one!)

At three years old Anna really just wants to be like her big sister!  Everything I hear is "Wook mom, I have ......... just wike Emma!"  This can be anything from a purple cup at dinner to a new Barbie to a birthday card that Nannie and Papa gave her that was like Emma's.  She loves her big sister and has really been missing her since she has started school. 

She loves to play with Barbies, dress up like a princess, pretend to do homework in Emma's workbook ("just wike Emma":), play outside, and absolutely loves swimming.  She gets so excited when we ask her if she wants to swim.  "YAY swim in pool, swim in pool!!" she will scream as she runs around the house.  Despite having many bathing suits she wants to wear her princess one every single time. 

Here are a few of her favorite things:
Color: pink
Food: chicken nuggets, mac and cheese
Drink: milk or juice when we let her
Princess: Cinderella
Cartoon:  Mickey Mouse clubhouse, Dora, Scooby Doo
Movie:  This changes weekly but right now loves Madagascar and is always singing and dancing "She wikes to move it, move it!"
Hairdo:  Asks every single day for a "front braid" where I french braid the front part.  I have to argue with her on any day that I don't want to do it!  Forget a normal ponytail, this girl likes to be fancy!

She continues to be in the 90th percentile for weight and is in the 67th percentile for height for her age.  Like Emma, she has really grown in height between the ages of two and three and slimmed down and I predict this will happen even more in the next year.  She grew three inches in the past year!  I have many more posts to catch up on in the next week or two so stay tuned!!