IBD-A MOM's guide to survival
It's been an amazing, life changing two weeks in so many ways. We will be leaving Portland tomorrow with a happy healthy child who has a new hope for a healthier future. From the unbelievably awesome team of naturopathic doctors we have worked with, to the changes we've seen in Maddy's health and the fantastic friendships we have formed, this experience has changed all of us in countless ways.
I can't thank Mark Davis, Sharon Woodard and Karin Parramore enough. These are three of the most kind, compassionate and dedicated healers I have ever had the pleasure of working with. They were available to us every step of the way and they were as committed to this journey as we were. I will be forever grateful to them for not only the healing groundwork they have provided for Maddy but for the warmth and friendship they shared with all of us along the way. This truly was a remarkable experience for all of us.
The road ahead may be long and it may be bumpy but it might just as easily be smooth, only time will tell. We are now transitioning into the slightly scary (and a little icky) phase of doing weekly transplants at home. Weekly infusions for the next 8 weeks and then we will reassess from there. I must admit that I'm a little freaked out to be doing this alone without the preparation and administration done by Mark. In typical Mark fashion though, he has promised to be there for us by phone, by email, by Skype. So, at least I won't really be doing it alone, I will be doing it under Mark's watchful eye. At least at first. Although, I suppose that just as this process seemed totally crazy at first, it all seems so normal now. Eventually, this will all seem normal. It's hard to believe really, that fecal infusions can become a normal part of your routine. But they can, and they have.
I Skyped for an hour and a half last night with another mom who is researching FMT for her 7 year old daughter. As we chatted about doctors, medications and yes, the power of poo-I realized that for us-this IS normal. Mark and I take pictures of poo and email them or casually look at them and discuss their esthetics. Mark even jumps up excitedly when Maddy invites him in to the bathroom to check out her latest bowel movement. Now that is a dedicated doctor!!
Today during our last infusion as Karin, Mark, Scott, Maddy, Echo the dog and I all sat around the 200 sq. ft. hotel living room that Scott, Maddy and I have called home for 2 weeks, I was preparing to cook Maddy breakfast. I invited Karin & Mark to join us. Knowing that it was not out of politeness, but genuine friendship, they naturally accepted. We all sat around eating and chatting (you guessed it-more poo talk) and naturally being that Maddy, Mark and Scott all play guitar and sing, the guitar made it's way out. An impromptu jam session broke out and as I sat drinking my coffee and listening to the laughter and music that filled the room, I was struck by how lucky and grateful I felt. It really was quite overwhelming. I'm not sure quite how it happened but something that could have been really scary and upsetting for a sick 10 year old had turned into an incredibly empowering healing experience. Who knew fecal transplants could be so much fun!! Since the moment she met Mark and his team, her fear dissolved. They made her feel comfortable, they made her feel important. And above all, they made her feel safe. I don't know about you, but I haven't had an experience on this level with many other doctors, in pediatrics or otherwise. I wish it were not the case, but this is rare. This is not to put down other doctors but more to commend this team for their incredible ability to put their patients in a relaxed and trusting state in order to really receive their treatment. On every level. This trio of pros have no idea how well they do this, not because it isn't important to them but because it just comes so naturally. It is just who they are. For Maddy, there is no more fear. Only trust. And only healing.
So, off we go into the sunset. Onwards to complete this journey on our own...it's going to be scary but we can handle it. And this won't be the last we see of our new friends in Portland. They are forever a part of us and we will be back to visit them again soon...these are the kind of friendships you keep for life.


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