Wow! I can hardly believe it's been so long since I've written...things have been so busy and Maddy has been doing so well, I just haven't had a moment to write!
We had Saturday and Sunday off this past weekend, with no FMT or other treatments. Maddy did amazingly well. She was full of energy both days. We spent all day Saturday exploring the Portland zoo and all day Sunday exploring the Oregon Museum of Science and Industry. Maddy was in heaven!!
Now, normally we would not attempt to do two days of heavy walking and activity back to back but we have a new child on our hands who is full of energy. You can see it in her face, the way she talks, the energy with which she moves. It really is quite remarkable. When Maddy isn't well, she uses reading as a coping mechanism. She escapes into a book. She's been doing it ever since she learned to read. (I know, I know-there's far worse coping mechanisms right?) It is something that I've used to gauge her pain levels for a long time though. The more she buries her nose in a book, the more pain she is in. On this trip, she has read only in the car and when she has nothing better to do. She hasn't read through meals, conversations or other more interesting activities like she usually does when she is unwell. She has spent her idle time swimming, playing, walking and eating. Lots and lots of eating.
My first indication that her inflammation had to be way down, was from a simple loaf of bread. If you've never heard of Dave's killer bread, you've gotta get some. It's killer. :) I often buy different bread for us than I buy for Maddy. She grew up on grainy, seedy, nutty dense breads, which we both loved! When she started showing signs of GI illness, fibrous breads were one of the first things to go for her. She started to "not like" things like seeded bread, nuts, berries and other things she'd always enjoyed. If she suddenly "doesn't like" a food that she's always enjoyed, it's a clear sign of a flare to me.
In any case, after a few successful days of the FMT treatment, I bought a loaf of this awesome seedy and nutty bread and she has been eating it like crazy!! With no pain and no problems! It really is unbelievable. Not only that, she's been eating strawberries, raspberries, mangoes, RAW snap peas, peppers and even broccoli!! (all things she used to eat but hasn't enjoyed for quite a few years)
These all may seem like simple things to some but to us, it's a miracle.
Maddy has also continued to maintain her pattern of 1 bowel movement per day with formed and semi formed stools. No blood, no mucous, no pain. She did have two bowel movements yesterday and retained the fecal infusion for just under 4 hours which was much less than her usual 20-24 hours but seems to be back on track today, having retained the FMT since 1pm today and a continually voracious appetite! My guess is that the weekend busyness, heat and a few too many foodcart snacks likely threw off her schedule a bit. Her energy level was slightly down on Saturday but I'm guessing that was due to waking around the zoo for 5 hours in the unexpectedly HOT May heat wave in Portland! She seemed to go right back to normal on Sunday and had the energy for another long day of running around the OMSI.
And yes, we made it through both the zoo and the OMSI, without EVER finding our where the bathrooms are! Another milestone for sure.
All in all, Maddy is doing phenomenal. Her doctor of Chinese Medicine says her pulses have improved dramatically too. Everyone can detect a significant change in her mood and her energy but nobody notices the changes more than Scott and I. We really are trying not to get ahead of ourselves. We don't know how long this will last. But we do know without a doubt that this is working. We will continue the fecal infusions weekly at home for 8 weeks and reassess from there. Like I said before, I will keep doing them as long as I have to. And it feels awesome to finally be doing something that works. Having hope is a wonderful thing.
As I was eavesdropping on Maddy's Skype conversation with her best buddy tonight, I heard her say: "Ya, for real. He comes with a bottle of poo every day and squirts it into my bum. " To which her friend replied: "Gross. But it's working! Cool!"
I couldn't agree more. A little gross. But it's working. Cool. :)
Now, normally we would not attempt to do two days of heavy walking and activity back to back but we have a new child on our hands who is full of energy. You can see it in her face, the way she talks, the energy with which she moves. It really is quite remarkable. When Maddy isn't well, she uses reading as a coping mechanism. She escapes into a book. She's been doing it ever since she learned to read. (I know, I know-there's far worse coping mechanisms right?) It is something that I've used to gauge her pain levels for a long time though. The more she buries her nose in a book, the more pain she is in. On this trip, she has read only in the car and when she has nothing better to do. She hasn't read through meals, conversations or other more interesting activities like she usually does when she is unwell. She has spent her idle time swimming, playing, walking and eating. Lots and lots of eating.
My first indication that her inflammation had to be way down, was from a simple loaf of bread. If you've never heard of Dave's killer bread, you've gotta get some. It's killer. :) I often buy different bread for us than I buy for Maddy. She grew up on grainy, seedy, nutty dense breads, which we both loved! When she started showing signs of GI illness, fibrous breads were one of the first things to go for her. She started to "not like" things like seeded bread, nuts, berries and other things she'd always enjoyed. If she suddenly "doesn't like" a food that she's always enjoyed, it's a clear sign of a flare to me.
In any case, after a few successful days of the FMT treatment, I bought a loaf of this awesome seedy and nutty bread and she has been eating it like crazy!! With no pain and no problems! It really is unbelievable. Not only that, she's been eating strawberries, raspberries, mangoes, RAW snap peas, peppers and even broccoli!! (all things she used to eat but hasn't enjoyed for quite a few years)
These all may seem like simple things to some but to us, it's a miracle.
Maddy has also continued to maintain her pattern of 1 bowel movement per day with formed and semi formed stools. No blood, no mucous, no pain. She did have two bowel movements yesterday and retained the fecal infusion for just under 4 hours which was much less than her usual 20-24 hours but seems to be back on track today, having retained the FMT since 1pm today and a continually voracious appetite! My guess is that the weekend busyness, heat and a few too many foodcart snacks likely threw off her schedule a bit. Her energy level was slightly down on Saturday but I'm guessing that was due to waking around the zoo for 5 hours in the unexpectedly HOT May heat wave in Portland! She seemed to go right back to normal on Sunday and had the energy for another long day of running around the OMSI.
And yes, we made it through both the zoo and the OMSI, without EVER finding our where the bathrooms are! Another milestone for sure.
All in all, Maddy is doing phenomenal. Her doctor of Chinese Medicine says her pulses have improved dramatically too. Everyone can detect a significant change in her mood and her energy but nobody notices the changes more than Scott and I. We really are trying not to get ahead of ourselves. We don't know how long this will last. But we do know without a doubt that this is working. We will continue the fecal infusions weekly at home for 8 weeks and reassess from there. Like I said before, I will keep doing them as long as I have to. And it feels awesome to finally be doing something that works. Having hope is a wonderful thing.
As I was eavesdropping on Maddy's Skype conversation with her best buddy tonight, I heard her say: "Ya, for real. He comes with a bottle of poo every day and squirts it into my bum. " To which her friend replied: "Gross. But it's working! Cool!"
I couldn't agree more. A little gross. But it's working. Cool. :)
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