As most are probably aware, our story has had some media exposure. Maggie and I did a simple little interview at my Grandma's house last week. Little did we know how broadly that would spread. TOP STORY and nearly 4 minutes of air time on the Eastern Iowa news station. I think they did a fabulous job with the piece. Her it is: KWWL news segment
It made sense when I my cousin told me she saw Maggie on the news in Des Moines, but I was a little shocked when a friend in Orlando told me she had just seen Maggie on the TV there. Since the initial airing and printing of Maggie on the front page of the Courier, there have been Maggie sightings in the following places: Minnesota, Wisconsin, Arkansas, Massachusetts, Florida, California, Colorado that I know of for sure. How cool is that?! As one friend pointed out...google "Maggie Selmeski". She's swept the nation!
As the news has moved a little further down the line, I've noticed a few more things have become a little skewed as well. Kinda like the game of telephone. I want to take a minute to clarify, just to not be misleading in anything.
1) Maggie is not from Janesville. She is actually not from Iowa. Shawn and I have been in Tennessee the last couple of years. That is where we are actually moving from. Daddy is still there finishing some projects up and will be meeting us in Colorado next week. Maggie and I are visiting all our family and friends, as all of Mommy's roots are in Iowa. Until laws change we won't be able to come back, so we are getting all our loving in while we still can.
When Shawn and I moved to TN, one of the stipulations was that I could jump in the car to come back to Iowa whenever I wanted. We have taken full advantage of that! I realized that in Maggie's year and a half, she has been back to the Midwest to visit family at least 6 times. That will come to a screeching halt next week. Thus, my motivation to advocate not only in TN, but also IA!
2) I did the interview at my grandma's house, Maggie's great grandparents, not my mom's (she's in MO). We are actually staying with my sister while visiting too. Oh well!!
3) Most articles said she failed 4 meds, which she has actually been on 6 meds plus the IV boluses. She was on 4 meds at the same time!
At least the important stuff was accurate. Maggie needs this new treatment option and we want laws to change!!!
In other news, I was able to speak with Senator Grassley on the phone. He is so good about listening to his constituents. I was glad that he took the time to listen and even become more educated on the issue of medical marijuana, as he has been a big opponent of the legalization of it. Maybe, if nothing else, our story planted a seed. And, he is open to us keeping him updated on Maggie's progress! Overall, I consider it positive that I had his ear for a bit. Just wish he could have met Maggie.
We have had a great time in Iowa. The treasured time spent with friends and family is awesome! I also got to share our story with a group of about 50 women at a Bible study last week. As I was telling Shawn, it is SO exciting to be able to be used as God's vessel and hear back about how our story is influencing others. I feel so honored that God is using us and our story, or more so, HIS story.
We've loved staying with my sister and nieces and running all around with them. We've seen my grandma's lots. We were able to get to Iowa City and visit all our friends down there. It's funny because it's basically a tour of my past: One day last week, we were on UNI campus, where Momma went to college, and had lunch with Aunt Nikki, went to Chuck E. Cheese's, where Momma worked in high school and college, hung out at Heritage Christian school where Momma taught Pre-K, and swung by the childcare center Momma piloted opening up.
This morning when Maggie and I were getting ready to leave, Ava, my niece asked where we were going. When I told her we were going to meet up with friends, her response was, "why do you you keep doing that?"
Pictures will be posted sometime soon!!
About Us
- Shawn and Rachael
- Shawn, originally New Yorker, transported to Tennessee for a few years, chased the love of his life in Iowa, only to move her back to Tennessee. Rachael, small town Iowa girl that traveled the globe to find her love in Tennessee. Little did we know how much our lives would change when Little Miss Magdalyn Joy entered the world. Join our journey through the unknown of Maggie's medical issues, known truths of God, and the nuts and bolts of life.
10.30.2013
10.07.2013
A big day for us!
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
Time: 10:30-1:00
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.
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
Time: 10:30-1:00
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.
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