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!