A busy week

We spent July 4^th doing plenty of nothing and capped off our day by finding a petting zoo for Ellie to explore in Natick. We are still unsure about Ellie and cleanliness of animals but decided to give it a shot and watch her very carefully.

I can just imagine the conversation:

‘Um, Dr. Jennings? Yeah…… Ellie has goat flu…..'

‘Really? Hmmmm.. How did that happen.’

Yeah, that is the conversation we want to avoid.

So with a huge wad of antimicrobial clean wipes on hand we made the trip and introduced Gut Girl to some livestock.

From her initial reactions, I think that she thought that they were very cool:

She particularly liked the goat that was very friendly:

AFter playing very hard and walking all over the zoo, Ellie didn’t make it to see any fireworks and didn’t even stir when the booms from the Esplanade made it to Wellesley. Abby spent last year’s 4^th at Children’s watching the Boston fireworks in the reflection of another building across the way from Children’s. This year we watched the action from our couch with a bowl of ice cream, really glad that we weren’t in Boston- on the rainy Esplanade or in the Longwood B&B.

Earlier in the week Abby surprised me this week by suggesting that we add yet another trip to our summer schedule this week and come to Maine to see my family this weekend. It will be the last trip for a while since we have a bunch of things scheduled for July and August in Massachusetts and probably won’t get up here again until Labor Day. Naturally I jumped at the chance to come up, see my family, and go for a trip on the boat with Gus and Abby:

We packed up a trunkful of Ellie gear Friday afternoon and we here for dinner. Ellie is becoming quite a road warrior and sleeps just as well here as she does in any other pack and play.

This morning started very early for me- 4:15 when I got up, checked on Ellie, changed emptied an ostomy bag and met my brother in his driveway to go fishing. We picked up my Dad down the street and were on the water by 5. The last time that the three of us got on the water together was October of 2005 and it was great to get out and catch some fish.

In other times of my life I would have gone crazy going this long between fishing trips, but with the events of the last 15 months, it really hasn’t seemed like that long. That doesn’t mean that grabbing the lip of the first striped bass of the morning was especially satisfying, but having those same fingers in an ostomy bag to start off a day just seems to put things in perspective.

The dad’s special stealth fishing trip was back on shore by 7 and we were home in time to meet our respective kids as they woke up, almost as if we had carved time out of thin air. It was sleep time that we all missed later in the day but definitely worth the trip.

One of the benefits of being near Boston instead of Connecticut is that it is great to be only two hours from my family. Connecticut was a solid four hours and I don’t think that we would have been here as much this summer if we were making the longer trip up. This gives everyone a lot of time with Ellie, even though she still isn’t 100% sure about what to make of her grandfather. She is appreciating the songs though.

Abby and I left Ellie this afternoon with her aunts and grandmother and went for a boat ride with Gus:

Since we had the possibility of being delayed on the boat (sunk, sinking, aground, run out of gas, run out of tide, etc) my sister the lawyer suggested that I write out a letter giving them permission have Ellie treated in our absence. Every time I have to do something official like this it reminds me of croaking to the receptionist at Yale for the first time ‘My name is Gib Brogan, I think you have my infant daughter Eleanor……’ Better safe than sorry, I guess. Fortunately I know Ellie's paient ID number by heart and didn't have to look any thing up.

Tonight Ellie entertained her cousins and grandmother: She also showed off her budding love of eating by sitting down and eating a whole lot of food with us at dinner.

We will be up here until at least Sunday but may go down very early Monday morning to avoid the traffic on the Maine and New Hampshire Turnpikes. We forgot a tiny but vital piece of Ellie’s IV set up and need to call the IV company in the morning to see if we can pick one up from their Maine office. If we can get a ‘vented spike’ we will likely stay through Monday. Tonight is on her night off of TPN and she doesn’t know the difference.

We always forget something, it is just a question of what we forget and whether we can make do without it.If we can't get a spike we will head home and get one from the bin in the closet where there are probably 10.

We had a very good week. I think Ellie liked it as well: