Boston or bust!

I just went to pick up Connor, and as I hoisted this 7.5 month old that wears 12-18 month clothing, it struck me. As his body weight succumbed to gravity and my hands pushed up into his armpits, I realized how much more tightly his arms were clamped down over my hands, that his shoulders and arms weren’t doing that slight slide upward that used to force me to clamp down a little tighter. His doctors and physical therapist have mentioned his improvement in tone, but today’s realization makes me realize how far he has come with surgery. His tone was not so low that he was diagnosed with floppy baby syndrome or anything, but neurological issues can cause somewhat low tone which means it takes him a little longer to master some physical activities. He has to build more strength first when doing something new. While his degree of low tone wasn’t expected to be  problematic long term, I love to see these little improvements.

He’s also loving his feet these days!

Naked baby loves his toes!

I also spoke with the people doing the study in Boston and it looks like we will be traveling in early January for our first visit. We ended up not qualifying for the initial study we thought we would take part in because his brain surgery disqualified him. Instead they referred us to another TSC study that didn’t have that as a disqualifier, but has similar goals. We have the option to extend our stay in Boston and have a  little mini-vacay as long as we pay for any additional hotel nights. But something tells me we may bypass that in the frigid month of January and wait until our next trip at 12 months old.

Connor will go to Boston at

9 months

12 months

18 months

24 months

36 months

I have a hard time not getting violent with TSA when I fly alone. This oughtta be good with a baby. If I end up in prison, tell Connor I love him.

2 thoughts on “Boston or bust!”

  1. We took Bethany to Neurology at Boston Children’s Hospital in 2004. We stayed at Ronald McDonald House in Brookline, MA. There was a little boy with Tuberous Sclerosis staying there at the same time so I’m sure you would medically qualify to stay there. It would save you lots of money and sometimes they have free passes to area entertainment. There is a really cool aquarium, children’s museum and science museum there! I sure do hope that you get some help from this study.

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