1 Year in Boston

I feel like Gib and I have a bunch of dates coming up that were big milestones last year. But today is probably one of the biggest. Not only is it my nephew's 17th birthday but, it was one year ago today that Gib and I followed Ellie's ambulance up the highway to Boston. If I had known then that in one year Ellie would be doing this well, I would not have been so scared. Below is a picture of my two favorite people, it's scary how much they look alike.
We chose to move Ellie's care to Children's Hospital Boston because they have a short bowel clinic. The idea of going somewhere that truly understood what we were dealing with was very comforting.

We also made the decision to come to Boston because my sister had offered us a place to stay. By this time we had spent over 2 weeks in the Ronald McDonald house, and were just about to loose our minds. The RMH gave us a room within walking distance of the Yale Medical, and that was great. But it was had to live there. It is hard enough to deal with you own emotions and confusion, but it is also very hard to watch other families do the same thing but in VERY different ways. We were really looking forward to staying with family, and enjoying their company and support

The move to Boston had the biggest impact on Ellie's health, because Boston equaled Omegaven. We know short gut children Ellie's age who have required multi-organ transplants to save their lives because they did not have access to Omegaven until it was too late. We came to Children's for the short bowel clinic, but now we will never leave because of Omegaven.

Sometimes I feel like Fresenius should hire me to sell their drug. I would like to stand outside every children's hospital with a banner and a bull horn to let all the parents know about Omegaven and what it can do. I would like to travel back in time to one year ago today to all those parents that we left in the NICU at Yale and convince them to come to Boston with us. It breaks my heart to think about where some of those kids must be today. We have said it time and time again, we credit Omegaven for saving our daughter's life. Thank you Kathy and thank you Dr. Puder.

So, now we have a beautiful healthy little girl. She doesn't eat as much as she should, but she doing well anyway. She is walking fully on her own now, and if I try to help she usually pushes my hand away. As much as we try to keep her clean her favorite place is still the dirty dog bed. She sneaks in there as frequently as she can, past almost any barrier that we erect. We know that she has managed to get in the bed by hearing her giggles and squeals. I found her in there the other day and had to take a picture before I yanked her out.

We are very happy here in Boston and are puzzled by what our life could have been like if Ellie was born with everything intact. We would have continued on as normal and we would have taken everything for granted. We never would have known how great it is to raise a child close to family. We never would have the chance to see how great our friends and families are in a time of crisis. We never would have gotten the chance to build new relationships and grow much closer with many members of our families. We never would have known how great a city Boston is and how much fun it is to explore Wellesley with a jogging stroller or baby backpack. And even though I miss my job, I never would have known how great it is to be able to spend everyday watching your child discover her world, the dog bed or the one kitchen cabinet that is filled with baby friendly Tupperware.

I can't help but think that maybe this was just meant to be.