Saturday, June 4, 2011

Cleansing Breath

What a wonderful weekend it has been. The heat wave has broken, and we are finally getting some of the low-seventies spring weather that we thought was going to be skipped.

Medical update: all's good in this 'hood. That's it. Seriously. We were seen at the vascular anomalies clinic in Boston on Friday. The doctors were all pleasantly surprised at how great Addy is going - totally on track developmentally, and responded to the lasers so well! One doctor commented she couldn't believe Addy was the same baby as the one they saw back in August, because she looks so different without the red. And, it turns out, being so on-track actually changes our plans a bit.
Normally, they would do sclerotherapy soon, to keep the VMs from getting any bigger and for cosmetic reasons. They are almost positive she has sinus pericranii, because they can now feel a little "ridge" below the VM on her forehead. This throws a slight monkey wrench in the plans, because it is important to do an angiogram before sclerotherapy when there is SP to make sure we understand the blood flow first.
An angiogram is not without risks, and the larger a child is when it is done, the easier, so we are going to wait. As long as nothing else changes, we will plan to do the angiogram and sclerotherapy sometime prior to kindergarten.
We felt an amazing shift after this appointment - it seems that what we are dealing with is cosmetic. They said the brain VMs are what they are, and aren't going to change. And without the facial birthmark, we wouldn't have ever done an MRI, and probably wouldn't have ever known they were there. As we were walking (strutting, parading) out of the hospital, for the first time since Addy was born, I mentally took a "cleansing breath." We got this.

Emily, one of my friends from Penn, came to visit with her fiance, Troy. We haven't seen each other in a year and a half, and I was thrilled to get to introduce them to Addy. We spent Friday night strolling around North End (Italian food and Mike's Pastry!!), and Saturday morning strolling around the harbor (Yankee Lobster!!). We were really surprised by the influx of large jellyfish in the harbor. I have no idea of it's normal or not, but I always think of jellyfish as being in warm water (like the water in Punta Cana, where Em & Troy are getting married in October!) and given the temp of the breeze coming off the water, the harbor is anything but warm right now!
 Don't worry, she didn't actually manage to get even a sip of either.
 Emily reminds me to lighten up, get silly, and smile. 

Today was also Town Day in Winchester. We just made it for the last few minutes, but it's will be a must-do for next year. Chloe and Pete just got back from watching the fireworks, so now it's time to tuck all the tired legs into bed. More great weekend on tap for tomorrow.

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