I spoke with Mark Davis yesterday to confirm what I already knew. This just wasn't working. I already knew that our next course of action would be to switch up the donor.
It is definitely disappointing to do this every day for 17 days only to find out it hasn't been helping. I'm a silver lining kinda girl though and I am so grateful for that little boy in Portland and Dr. Davis because I know beyond any doubt that this works for her. If there is one donor out there who is the right match, then there has to be another. With any luck, that donor will be in our family or close circle of friends. So, we are testing the next in the line of potential donors..who will it be you ask? I will keep you in suspense....
Under the heading of things you never thought you'd ask your family and friends: "So, uh...Dad? You doing anything with your poop? No? Great! Pass the salt, will ya? We don't yet know if our potential donors will make suitable donors until the testing is complete and even then, we won't know if their samples will work any better than mine. The science of this is so new and so much of it is unknown to even the experts, that it really is a giant guessing game.
In the meantime, we are in a holding pattern. It is really hard to watch Maddy get sicker again. And it's even harder knowing that my poop isn't her medicine. Not only would it have been logistically WAY easier, it is also a little upsetting knowing that my poop ISN'T her medicine. I CAN'T cure her. At least not alone. That, and my HUGE ego would have loved the thought of having super healing poop powers. ;)
In the meantime while we are testing our next donor, I will take a bit of a break from poop running my schedule, my social calendar, my life. I'd rather be continuing with a healthier child but sometimes you've got to look at the bright side, however dim it may be. I'm not going the lie, it was kind of awesome to poop today and not have any "prep" before or after.
Our daily routine has consisted of waking, me pounding coffee if I didn't have to "go" right away, prepping for FMT, collecting the sample, processing it, administering it to Maddy, followed by abdominal massage and acupressure for her. Then I make her a healthy homemade breakfast and serve it to her while she lies still to absorb the treatment. Unlike in Portland, she has had a lot more trouble retaining the treatments and has often needed to lie still for an hour or more each time and most recently for several hours.
By this time, I have cleaned up from breakfast, FMT and managed to get myself showered before heading out to get her to school for the last few hours of the day. I'm able to squeak in a few hours work before picking her up again at 3pm. Then more work, Maddy's activities, walk the dog, dinner, cleanup, bedtime, laundry and more work before Scottie gets home at 10:45. The poor man gets the worst of me by then and never complains. For that I am grateful too, I have more support than I could ever hope for. Thank god I am self employed! I have no idea how anyone with a real job could pull this off!!
Needless to say, a few days off from this schedule will be a welcome change but I know that Maddy's health will continue to decline with each passing day so I am eager to start again with a new donor as soon as we possibly can.
Now, one might think that the prospect of a third donor's poop might wig her out a little. Oddly, no. I pitched her the idea today and you know what she said to me? "Well ya mom, good idea. No offence but your poop is well...kinda the shits!" Then she smiled that coy 10 year old smirk that says "I know I'm going to get away with being totally inappropriate because I'm so damn cute and funny. "
And she did get away with it. Not because it was cute or funny (which it totally was) but because it was brave. Just like her.