Day 2-Parades, squirrels, and treats.

We headed out early again Wednesday, but for a much more fun reason...The Red Sox World Series Champions Parade!  I was really excited about this, knowing it would be a unique experience for all of us.  We adopted the Sox as our MLB team the first year we came up here, thinking it was the least we could do in gratitude to the city that has done so much for us.  So we enjoy rooting for the Sox, and have seen first hand the amazing following that the Boston sports teams have.  I knew it would be crowded and crazy, but it was so worth it.  They estimated 1 million people would be downtown for the event, and with it being on Halloween, they figured it would be even crazier.  If we were going to go though, I wanted us to be able to see so it would be worth it.  We left early so to be able to get a spot on the rail.   I chose Boyleston street just off Copley square, a spot pretty much in the middle of the parade route.  We got there just in time to get a front row spot and sat down, holding our spot and keeping entertained by playing uno, as the crowd closed in around us.

After a couple of hours of waiting, amidst a growing crowd of revelers, we caught sight of the parade coming our way.  They made it to us, and it was so awesome!  Music and everyone screaming, confetti flying everywhere, it was amazing.

  Duck boat after duck boat, carrying all the players and their families and even the office and medical staff for the team, came down the street, lined with Sox fans going wild.   Jacob even caught a Red Sox bracelet tossed from one of the duck boats.  It was so much fun, and a truly amazing experience.  This city is unique in its pride.  This wasn't just a Red Sox parade, it was a celebration of the city of Boston.   I'm so grateful we were able to be there.

After that we slipped into the library to warm up and settle down.  We hung out in there for a bit and let the crowd disperse, before setting out for lunch.  We headed just a couple of blocks over to Eataly, which was a place someone told us about that we thought we'd try.  Attached to the Prudential Center, Eataly is an Italian marketplace, selling fresh pastas, breads, meat, fruits, vegetables, and wine.  It also had a multitude of different places you could buy already prepared Italian food of any kind you could want.  We ate lunch and of course had some gelato.  We wandered into the attached Prudential Center mall, and found a bathroom and changed the boys into their halloween costumes.

 We then set out for the Boston Public Garden and Commons, my favorite place in the city, and seeing it was a beautiful day, figured it was a good place to kill a couple of hours.

Mom and I thoroughly enjoyed the park as well.  It's a beautiful time of year here, with the trees changing colors, and the weather was gorgeous.

 Asa and Jacob had a great time running around in their costumes for a while.  We of course paid a visit to the ducklings statues, and we also stopped by the Robin Williams bench (from the iconic scene in Good Will Hunting), and met a man there feeding the squirrels.  We sat with him and talked awhile, as he was eager to share his treats and his love of squirrels with anyone who approached.  He said he comes there to that same spot 3 times a week and feeds the squirrels, and it showed!  They clearly trusted him and were all but swarming him for his almonds he had with him.  My boys sat by him and before long were in by association.  The squirrels were jumping and crawling all over them looking for treats.  One even got up close and personal with me,  to investigate my phone.  The boys loved it, so much so that they both later said it was their favorite part of the day.  Amazing how sometimes it's the small things, the little moments that become the most memorable.

After that it was time to start trick or treating!  We started on a quieter street in the Back Bay, well known for its trick or treating, which was great.  But we had heard that the adjacent Beacon Hill was the best place in Massachusetts to go trick or treating (outside of Salem).  So we went on to there, which was just one street over from the Garden and Commons.  Everyone was right and this apparently was a well known fact, as there were a ton of people there!  Everyone was dressed up, all the beautiful brownstones were decorated so cool.  The city closed the streets off to traffic, making navigating easy, and with them being row homes, it was so easy going from one to the next, with never a dull moment.  It was a very festive atmosphere that was also a unique Halloween experience.  The boys got a ridiculous ton of candy, and once they were worn out, we headed back to the house.

Every trip we do so many fun things and have so many great days, but this one was one for the books.  It was a true Boston experience, which I loved.  This city and its people are amazing, and I am thankful to call it our second home.

Day 1-A Good Report. Playing with science...and ghosts.

We made it to Boston in uneventful fashion...which is always a good thing.  Good flights, no delays or issues.  Our flight left dark and early, which did allow us to see did see a beautiful sunrise.  We had a layover in New York City, so the kids also enjoyed a glimpse of the Big Apple from the air. 

We arrived in Boston, made our way to the Devon Nicole House, one of the 3 family lodging sites of Boston Children's Hospital.  We got settled in, and then headed out for groceries.  We spent the evening at the house, tired from traveling, and went to bed early. 

We got up early and headed to Jacob's first appointment with the orthopedic specialist.  For this appointment, they specifically wanted us to see this specific physician, who was only at one of BCH's satellite campuses this week, so we made our way there, which was unfamiliar territory for me.  But I was happy to do it, as this particular ortho specializes in the care of kids with vascular anomalies which effect the skeletal system.  With the Jacob's lesions' proximity to his spine, this makes her expertise very valuable.  She is the orthopedic specialist that works in the Vascular Anomalies center and collaborates with the other subspecialists on the care of kids with venous malformations and related syndromes.  We have seen her before, but not for a couple of years, as his spine has just gotten bad in the past year or 2, and she was on maternity leave on our last visit.  So we were anxious to see her opinion on how he was doing.  We were very pleased to get a good report! The degree of curvature of Jacob's spine is improving.  It has gone from 18 degrees, to 14, then 11, and now 7, which is mild.  This tells us that what we are doing is working!  We were so discouraged when it got so bad, but the improvement we are seeing shows that the treatments are working, keeping lesion growth at bay, and keeping pressure off his spine.  We just lost a lot of ground when we went 2 years without treating.  But our consistent treatments these past 2 years (every 6 months), have gotten it back to an acceptable level, and greatly improved his spine.  She said his gait looks good, and she said, "Tell Dr. *** (our interventional radiologist who has been doing all of Jacob's sclero) to keep doing what he's doing, because it's working!"  I was so happy to hear this.  I know that this will remain an ongoing battle to keep his spine safe, but for today, I take a sigh of relief, and also lay down my guilt, which was an unexpected gift.  I had a lot of guilt the past couple of years that I had made the wrong decision in letting Jacob go so long between treatments, telling them he was doing fine.  I didn't realize how much damage was being done to his spine.  But to hear that the damage was essentially reversed, as when he was first diagnosed and we made our first trip up here, I believe his curve was 7-8 degrees or so.  So to be back where we started is a grace I never dreamed to hope for.  But I am beyond thankful to He that is able to do exceeding abundantly above all that we ask or think.  Jacob was excited to see that this satellite campus had one of the contraptions with the balls that go all different directions, striking different objects and following a sort of maze (I don't know what you call them), that the main campus does.  We spent a few minutes there, and then left this appointment in good spirits, and had the rest of the day in front of us to do with as we pleased. 

 We headed downtown from the suburbs, and went to the science museum.  It has become one of Jacob's favorite outings in Boston, and I had a feeling it would be for Asa as well.  He loves science so I figured it would be right up his alley.  It certainly was, and both of the boys had a great time.  WE started at one of Jacob's favorite spots, one of the ball maze thingy's like what's at the hospital, but on a much larger scale. From animals to space,  lightning to dinosaurs, we explored every corner of the museum, not leaving until closing time. 

From animals to space,  lightning to dinosaurs, we explored every corner of the museum, not leaving until closing time. The boys even got to dissect an owl pellet (not poop if you're thinking what I thought, but it's still gross). 

 Afterwards, we parted ways, with mom taking Jacob back to the house, and me and Asa staying out on the town.  I wanted to have some quality time with Asa, and thought the night before Halloween, a Ghost and Gravestones tour would be fun, especially in arguably one of the oldest and most historical cities in the country.  We had a great time.  The tour was a lot of fun, and our tour guide was very funny.  I thoroughly enjoyed it, but more so, seeing Asa have such a good time.  It's a tough age, and to have an evening just talking and laughing together, is something I will hold onto for a while I imagine. 

So we had a very successful first day in Boston, many thanks to all who prayed for safe travels and good reports...please keep it up!

On our way...

I'm sorry I've been bad about updating.  I put FB updates out as Jacob recovered last April, but never got around to a blog update from our trip.  It went very well, and we got a positive report from his procedure.  The lesion growth was relatively stable between that one and the previous treatment for the first time ever.  From all the research they have done on Jacob's condition, for many patients, their lesion growth plateaus in later childhood.  The lesions grow in response to growth of the child, and to hormones, and children's growth typically level out from ages 5-10 or so.  For Jacob, we had not seen any stabilization of his lesion growth yet, and as he is now 7, this is a concern.  He still has had rapid growth and no signs of slowing down or respite...until this last one.  With the last one showing more stability of the lesions, I am hopeful that perhaps we have hit the quiet phase of this condition.  I am anxious to see how it looks this time, as they were still hesitant to get my hopes up that he is plateauing, having only seen 6 months of relatively little lesion growth.  I am hoping that if we get a good report this time, that perhaps that is where we are, and maybe even they might feel comfortable going longer than 6 months between treatments.  I will not push for this, as we have experienced going too long between and the impact that had on him, but if they are feeling more comfortable, I will not argue.

Here are some belated pictures of him on the last trip on procedure day...in preop, rolling into the OR suite, and leaving the hospital...he was so brave. 

In the meantime he has been thriving, as has our whole family.  The end of April started our birthday season, with Elena turning 11, followed by Asa turning 13 in June.  July brought Luke's 5th birthday, and Jacob's 7th birthday within a week of each other.

The summer brought baseball for the little boys, where they got to play on the same team for the first time which was really fun.  We spent the rest of our summer swimming and playing outside. We vacationed in July with the family.

And gained a new member of the family when we got back.  Little Via joined our crazy crew, and has settled in well.

 Speaking of new family members, after a tragic loss of her flock to a weasel in May, Elena committed to rebuilding and raised a new flock of baby chicks over the summer.  To help her ensure their safety as well as accommodate the larger number of birds, we expanded her chicken run and built a brand new coop.  David and his dad did it themselves, and did an amazing job!

She now has 1 rooster, 14 hens, and 3 guinea fowl.  It has been a ton of work, but she has done a great job, and now is seeing the fruits of her labor as the hens have began laying.

Back to business, We left early early this morning, and are currently on a layover at LaGuardia, but should be in Boston a little past noon.  We have appointments scheduled Tuesday and Thursday, and his procedure is Friday November 2.  I am hoping we can find some fun activities for Halloween and packed costumes with us.  I figure Boston is a good city to celebrate such a holiday, and am excited to see what we can find to do.  David is not able to go with us this time, but my mom is going, and we decided to take Asa as well.  So the 4 of us are on our way. 

So far I think I'm doing pretty well, compared to my usual.  Honestly I haven't had the time to think about it, nor have I really allowed myself to do so.  I am trying to view it in a routine sense, that we aren't expecting anything out of the ordinary, he is having routine (for him) treatment for his chronic (albeit rare) medical condition...only thing is we have to travel 1,000 miles to do so.  But I am keeping my feelings in check, and taking things a day at a time.  Another aspect that has become routine as well, is the lack of insurance approval for the procedure. They sent me a denial letter last Monday, and I spent another hour and 40 minutes on the phone with them Friday...so that battle ensues, as per our usual.

Please pray for all the logistical details of the trip to work out quickly and in the least stressful way possible.  Please pray for our safety as we go and navigate the city without David.  Please pray for my heart and mind as we walk this road again.  Please pray for every hand that touches my child, that they move with surety, compassion, and utmost care; and may they have wisdom and clarity of mind.  More than anything, please pray for my baby.