Saturday, July 19, 2014

Boston Round 3...and a good report so far!

Greetings from Boston! Sorry I am just now updating, but I am finding it harder than ever as my hands are full with my whole brood up here!  We flew up on Thursday, thanks to our friends at Miracle Flights for Kids.  We had a great flight, this time flying nonstop from Nashville.  




Asa and Elena were so excited, Elena having never flown before, and Asa practically so, as he doesn't remember the one time he flew as a baby.  Jacob was an "old pro," determined to show them how it's done. 




But by the time we took off, Jacob handled the flight in his usual fashion...


Luke slept most of it as well, and before we knew it, we were in Boston!  The kids were so excited to see the city, and I was anxious to see where we were staying.  As some of you know, we could not stay at the Yawkey Family Inn this time, as they can only have 4 people, and we have 6.  It was a challenge to find reasonable lodging.  I was delighted to arrive at our rental apartment.  We had the 2nd floor apartment of this charming row house.  It is an old house, with tons of character, but remodeled with modern finishes.


It also has a lovely yard/garden for the kids to play in...


And the best part of it, was the view! Right across the street form the harbor, with beautiful views of downtown Boston.  Here is the view from the master bedroom...


And at night...


In addition, 100 feet from our front porch is the East Boston Piers Park.  Huge expansive grassy field to play in, and 4 play structures, and a fountain to play in!  We immediately decided to give it a test run and burn off some energy.





Also, off the pier, they rent sailboats, which makes for a great view of the boats.



We got settled in Thursday night, and found a grocery store, and got some food.  Friday morning we woke up ready to explore.  First stop, the subway! Asa and Elena were so excited to ride the T.  


We rode first to Copley Square.  We decided to give the kids a little culture and visit Trinity Church, one of my favorite places in Boston.




They were somewhat impressed, but not as much as they were by the Tortoise and the Hare statue out front in the square!




It was a great outing though, and after a quick lunch, it was time to head to the hospital for Jacob's first appointment.  After a few mishaps, involving a wrong train, and a left backpack at a train station, we finally arrived at the hospital, only a few minutes late.


Our appointment was at the Vascular Anomalies Center with our Interventional Radiologist who has done all of Jacob's procedures on the vascular lesion in his back and chest.  There, he did an ultrasound on Jacob's back and was very pleased with what he saw.  He showed us comparison between the first treatment pictures and the current ones.  There is very little lesion left!  He found only a small sliver within Jacob's chest, and a few small areas on his back.  You can see the glue where the lesions previously were, but they have done exactly as he had hoped.  The channels he worked on closed, shutting off the blood flow to the lesions causing them to shrink and disappear.  This is so exciting for us, as we did not expect (nor did he), such a quick and total improvement.  He wants to move forward with this treatment to completely eradicate the lesions, but it will likely be the last he will need for hopefully a long time, if not ever.  He did say, and we need to remember, that because Jacob's are Blue Rubber Bleb Nevus lesions, they could come back, likely adjacent to the original site, but they may not.  If they do, hopefully it won't be for a long time.  But our doctor said he expects Jacob to do very well.  He is also expecting for this treatment to be the easiest one yet for Jacob.  Obviously, the larger the area being treated, the more difficult and painful it is for Jake.  Which is why the first one was so rough.  This time since the treatment area is so small, I am hoping it will be a relatively easy recovery for him.  Jacob was ready to leave the hospital after that good report!


After that good news, we headed back to our apartment for dinner.  After we ate, we headed back out to go to the Boston Children's Museum.  On Friday nights, admission is only $1, which we were happy to take advantage of.  It was a little more crowded, understandably, but we had a great time!






It was great fun, even the bathroom break, with its lovely display of animal poops!


We had a wonderful first day in Boston, and are looking forward to another great one today.  Thank you all so much for continuing to keep us in thought and prayer.  Already great things are happening for our Jake and I am so thankful for the opportunity to be here with the amazing people of Boston and Boston Children's Hospital.  Love to all of you from the Casteel's in Boston, and keep praying and believing in "Today's Miracle!"



No comments:

Post a Comment