Boston

Hull, MA has been our go-to vacation spot for the past few years. It’s right by the ocean, the city and isn’t too terrible of a drive. This year, I decided that along with our vacation, I wanted to see if we could get Colleen in for a second opinion at Boston Children’s Hospital. This started with a phone call. I was actually surprised how relatively easy it was to get her seen there. We gave all of our info, sent her records (where they determined if we would see the Neurology department or the epilepsy department) then scheduled our appointment. 

I asked about an appointment during or scheduled vacation, and they were able to fit is in! 

I swear we pack half the house to take our vacation. We took Colleen’s bed since it’s portable and brought our inflatable mattrice. Learned the hard way last year that Colleen was too tall for her pack-and-play, and she got way too much enjoyment in jumping in the just barely taller loaner crib. After that, it was clothes and some toys for her. 

The drive down itself wasn’t too bad. The biggest issue last year was Colleen eating and drinking before and during the trip and not being able to burp, which meant a very angry baby. She was considerably better this year.

We left Monday. Our appointment with Boston was Tuesday. I had initially looked up to see if we could take the ferry from Hull to the hospital, but the hassle of lugging a stroller and everything required then trying or get on trains afterward just seemed like too much of a hassle, so we just drove.

The actual appointment itself went very well. With so much uncertainly around her progress and all that is happening with her increased amount of seizures, it was incredibly relieving to walk in to a place and have a solid plan. We have some small steps (bumping up her keppra) and possibly changing her med if that doesn’t do the trick. They had a cancelation on Thursday for an EEG, so we took that. The tech asked us if they always looked that way (the amount of spikes) and I said yes, unfortunately. I keep hoping they’ll decrease, but since she’s had so many breakthrough seizures in the past few months, I knew it was unlikely. 

For now, we have another trip planned in November. 

I think in terms of vacation, we’ll definitely have to stay longer. Between traveling to the city and just travel to and from home, we didn’t get to do as much as hoped. There was some beach time, but I really wanted to take Colleen to the hotel pool. It’s a tad warmer than the ocean! We did also get to take her to the aquarium, which she loved. Favorite spot for sure. 


We’ll definitely do more in the city in a future trip. 

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