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).
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!
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