Ducks, Baseballs, and Good News

Greetings from Boston!

We made it up here on Sunday afternoon, and are finding our way again at our home away from home.  We spent the remainder of Sunday getting settled in, and getting some groceries.  This is the first time we have stayed at the Devon Nicole House, one of the smaller patient and family housing sites for Boston Children's.  While we love the Yawkey Inn, we are finding the DNH very comfortable, and actually a bit closer to the hospital, so very convenient.

We had a last minute change of one of our appointments, which was moved from Monday to Tuesday.  So we found ourselves with the whole day Monday to do whatever we wanted.  Jacob wanted to go to the science museum, which is his favorite.  The hospital also gave us tickets for a duck tour, one of the land and water vehicle tours.  We did this first, and had a great time.  It's a fun way to see the city, and Jacob was very excited as he even got to drive the boat a bit!

After the duck tour, we went into the Science Museum, which is one of Jacob's favorite places in the city. 

 They had a new exhibit, a mirror maze, which Jacob loved.  It was really cool, and he found his way through it twice.  He was laughing the whole time, because there were "so many Jacob's." 

 

We spent the rest of the afternoon playing at the museum until it closed.  We headed back to the house, exhausted, and ready for an early night, since we had a full day of appointments scheduled for Tuesday.

The first one was at 9am, with a new orthopedic physician, who specializes in the spine.  After getting a new round of x-rays, we met with him.  He was actually fairly pleased with Jacob's spine, being at only a 16 degree curve (albeit also with rotation), vs. the 14 degree curve he had last March.  So it is relatively stable.  He also felt that in regards to the lesion's relation to Jacob's spinal cord, that there was still room between the two, that should allow sufficient space for the spinal cord, and that it is not currently being compressed by the lesions.  He did see an area of questionable invasion of the lesion into the spinal canal, which he said if they see that today during fluoro, then he will want us to proceed with an MRI to further evaluate.  He was pleased with Jacob's exam, that Jake showed no weakness in his legs or feet, and had good sensation and reflexes as well.  This supported his opinion that his spine is still, though curved and rotated, fully protecting his spinal cord.  He reiterated that decisions on surgical excision of the lesion, will need to be made based on Jacob's symptoms, which we all agree that currently do not warrant such a drastic move.  So bottom line, though we are not, and likely will not ever be out of the woods in regards to Jacob's spine, we get a pass for today!  As much as I would love reassurances of being able to cross this worry off the list, I will take what I can get.  With this wildly unpredictable condition, we will keep hoping and praying for "Today's Miracle"  and are thankful to have gotten it today.

We spent the next few hours in the pre-op clinic, and David even took a "break" and went and gave platelets (which they announced overhead that they are in dire need of) here at the blood donor center.  I'm also thankful for my brother Mitch, for stopping by our local Blood Assurance in Chattanooga, and giving yesterday in honor of Jake.

We got out of preop early, and grabbed a bite to eat, and found they could see us early for our last appointment, with our Interventional Radiologist, who is our main treating doctor here.  He is amazing and has done all of the Sclero procedures on Jacob here in Boston.  I was very anxious about this appointment, as they had prepared us for the possibility that he would have to cancel the procedure, if there was too much scar tissue, and not enough open channels of lesion to treat.  This would have put the surgical option quickly back on the table.

He ultrasounded Jacob himself, and though he could see extensive areas of scarring, he did see open areas that he can treat, so we were a GO for the procedure Wednesday.  He also incidently saw a spot on Jacob's spine x-ray, and from our reports of Jacob's intermittent leg pain, ultrasounded his leg and found a new cluster of lesions in his right thigh.  The spot that was visible on the x-ray was actually a calcified blood clot, likely causing a lot of the pain.  He is going to sclero this area as well today.

After our appointments, we went back and took a nap, and then got a call from our friends at the hospital that they had Red Sox/Yankees tickets that had been donated that they wanted to give us.  We were so excited!  We headed to Fenway, and found we had great seats, just up the 3rd base line.  It was a little chilly, but hot chocolate kept us going, and it was a fun game.  We explored the stadium a bit, even went on the Green Monster.  The Sox played great, even had a 9 run inning with a grand slam, so it was very exiting.  Best of all, right before we were about to leave, David caught a foul ball for Jacob!  They both were so excited, and it was really fun, all the fans around us cheering for and high fiving Jake.  It was a great experience that I think we will all always remember.

So now, we are in the waiting area, as Jacob went in a little after 8am this morning.  Overall, we are happy about how things are going so far, but will not take a breath until Jacob is out of surgery today, and hopefully, we get a good report.  Thank you to all who are praying for him and for us.  I'm not feeling too articulate right now, as my mind is very scattered with Jacob under, but hope this quick update makes sense, as at least it provided a distraction for me.  I will update again as I am able to.  Again, thank you all for your prayers and support.