I realized there are a handful of things for me to post about today.
The first thing is something I have been looking forward to a while now. Today we get to celebrate one year of not being in the hospital. Within the first 4 1/2 months of Maggie's life, she spent 26 days in a hospital. Granted the first 3 were when she was born and would be considered "normal" (If we can say that about our journey :) ) One year ago we left the hospital with a still vomiting baby. She had vomited for a week before I took her in, she vomited the entire week we were in the hospital, and one week after we left the hospital, she was still vomiting. It was that stay when I realized that even everyone at the hospital can't always help us. Another "special" mom shared that our kids have seizures and that's part of our life. They have resolved to only go to the ER when they think their daughter is truly dying. I decided to adopt this philosophy as well. Granted, that doesn't mean this past year has been all rainbows and roses. And, it clearly does not mean that we threw our hands up and did nothing. If anything, I realized that I couldn't sit back and wait for doctors to provide me with the answer, that I had to become a student of my own daughter. I needed to figure out what she needed and then fight for whatever that might be. There is no doubt in my mind, that without the manual therapy, we would not have been able to avoid the hospital. When days would be questionable, I would often tell Maggie..."just hang in there till tomorrow so we can go see Piotr" and every time, we would be fine. Piotr and the team would be able to "listen" to her body and help alleviate whatever may be acting up. What a blessing staying out of the hospital has proven to be?!?!
Second thing...We got the ok from our neuro to begin a slow wean from one of her meds. This will help minimize the amount of meds in her system when we begin the cannabis oil next month. So tonight we began the process! And, the harvest is underway, so the entire process is set into motion...we're doing this! (Let me take a moment to clarify a little bit of this process....things will most likely get uglier before they will get better. As much as we would like to hope that the cannabis oil will be a miracle magic bullet, we are fully prepared for the journey to become more difficult for a while. The cannabis oil could magnify the side effects of the pharmaceuticals that she is currently on. Over the coming months, we will begin weaning the pharmaceuticals, but with any wean comes the battle of detoxing. At the same time as weaning, we will also be slowing increasing her dosing on cannabis oil. I know many will be anxious to know how it's working, but I anticipate it will take 4-6 months for us to really hit our stride. Not that Maggie hasn't already taught me patience!)
Today was also our interview with WCYB Channel 5. Julie Newman, a evening anchor came out today and spent some time hearing our journey and learning about our story. It was a pleasure spending time with her and the cameraman. What we did learn was that Momma would be an awful Miss America competitor. Julie would ask a question and I would go off on a 5 minute tangent and be so far from the original question! The few things Daddy contributed were probably much more important than all the talking I did! It should be airing some time this week. We will be sure to post a link (unless Mommy comes across crazy!!)
Finally, there are a few events coming up:
Our friends at Greene Valley Developmental Facility (where Maggie and I go swimming daily) are having a fundraiser for Maggie.
For $5 you can get 2 hotdogs, chips, and a beverage!
When: Thursday, October 10th
Location: in front of the gym (located at the back of the campus)
Come on out and pick up lunch!
We have been extremely blessed by their generosity to allow us to use the pool and when they told me they were planning this for Maggie, we were beyond grateful!
There is a Bon "Voyage" Fire planned this coming Saturday. We will also be sharing our testimony from this journey and coming together for a time of worship, with Daddy playing :). Feel free to contact me for more information about this.