This is a post that is long overdue. (aka will be long)
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| Lovin on Great Grandma Sue |
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| Snugglin with Great Grandpa Hank |
First things first, our trip to the Ranch,
Eagle Ranch that is, went great!! We got to see lots of family, Grandmas and Grandpas, Aunties, Cousins, etc. Maggie had a great time with everyone. She even worked diligently and rolled over twice while we were there (stomach to back). One of the times was while we were playing cards. Maggie was working hard at it, and then we all got distracted by Daddy trying to cheat. We looked back, and there she was on her back.
Unfortunately it rained on Saturday for the ride and was a little chilly. But, everyone was still in good spirits, and that just meant more time for everyone to hang out. On Saturday night we had an auction that went really well. Little did we know that Uncle Tyler was such a good auctioneer and Great Aunt Nancy's hot pepper jelly would be such a big hit. Between the ride and the auction we raised $4,100! Awesome!
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| Nappin with Grandma Cheryl |
But, the best part of the weekend, was Sunday morning. We had a chance to share our story. Mom, Jerry, Brooke, and Tyler have just been getting Cowboy Church up and in the works. Without a music component completely in place yet, Shawn was excited to be leading worship again. Before the auction, I was able to share a bit of Maggie's medical history and we planned for me to share a bit of our testimony at Cowboy Church. Sunday morning, the pastor that usually comes out had to bail because he was sick. Initially Jerry was a little bummed when he told us Cowboy Church would be a flop. I was excited because it meant I didn't need to condense so much. I was able to share, without concern for time, what God has taught us along this journey. (Even at that, it was still just a minute sprinkling of what we have been learning). There were a few tears shed, but it was such an honor to have that platform. There is no doubt in my mind that God is using our situation. The gift of boldness is something He has definitely blessed me with through this journey. It is my prayer that God was able to use those words for His glory and that lives were changed by our story.
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| Ranger Ride at the Ranch |
While we were in Missouri, my sister lined up an appointment for something called Zyto scan. A non-invasive electronic energy way of bio-communication, it was able to assess her body for where was most stressed, food stressors and foods that would be good for her. This was something that I was a little skeptical of but thought it could hold some validity. Interestingly enough, it assessed her kidneys as highly stressed, just like Piotr had earlier that week. The food that would be most beneficial (by a long shot) was rabbit. Kinda crazy, but I tracked some down and we are getting some. (Not literally bunny tracking :)...Earth Fare has a supplier) We are taking all this feedback into account as we introduce foods. The scan also recommended some supplements that would be beneficial for her to take, one of which she is already on, just up the dose a bit. We are continuing to research and explore the other ones.
My thoughts on the whole Zyto scan is that it is only as good as the creator/programmer. After doing it, I think it is a valuable tool to help us, but nothing we do will be able to fully encompass the capacity for which The Creator has created our bodies. There will be flaws in any avenue we pursue. It just means finding the best information we can and trying to get Mags as optimal as possible, all the while submitting to her (our) Creator's direction.
Since that trip...
Maggie has continued to work on her rolling over skills. It takes so much effort, but she can do it, and that's what's important. By repetition, eventually it'll become natural for her. Sleep schedule has been a little goofy. She's also been eating up really well lately and desperately working on holding her head up. She starting drinking from a cup this week and has been doing really well with it. Mommy is surprised we don't end up with more down her front! Being on the brink of her first birthday next week, she is truly becoming a toddler.
Regrettably, we are still seeing the spasms. GRR... However, I emailed the neurologist with my reccomendation. It's a little goofy request, weaning her completely off the Clonazepam and upping her Zonisamide (This is one that some kids with IS have had success with, she is already on it and it has tested well for her) Surprisely, the doctor responded that he "agreed and the plan was very sound". I consider that a win, that my gut instinct and the doctor were in agreement! So, this week we started weaning the Clonazepam the rest of the way, and she's already started to regain some of her spunk! I saw true smiles twice today...first time since probably February. Love this!!!
We have really been pondering the next piece to our puzzle. Our therapy with Piotr and up in Connecticut has been awesome structurally and for restoring the integrity of her systems. I think it is still a critical component, but we are at a point where we also need more functional tools. A while back, I cam across the website of a place called the Family Hope Center. It's located in Philadelphia. Just recently, in one of the Infantile Spasm groups, a mom mentioned this center as a critical tool in advancing their son developmentally and the best bang for their buck. After talking with her on the phone asking lots of questions, and further delving into their website, today I realized, with a lot of confidence that this is the next piece for us. So much so that as I was looking into the websites, I began to tear up at various times. Tears saying, "this is what's next!" The first thing is to attend an interactive 3 day conference where we are taught all about the brain, what part is responsible for what and where has been affected, how it changes and grows and what is needed to foster that. After that, we make a 2 day appointment. The first day they assess where she is at, medically, neurologically, developmentally, etc. The second day, they roll out her personalized plan. The plan will include an education/sensory/social program, nutritional program, physical program, and phyisiological/repiration program. Then we will have the tools to implement what we need to at home. I am very excited to see what will come from this. I can tell she is a smart cookie, but I often feel she is trapped and her brain is not so sure what to do with that body of hers. I have been researching the neuroplasticy of the brain a lot, and there is so much hope for the opportunity for change. The mother I spoke with was talking about her sons brain becoming more organized. An organized brain allows less opportunity for seizures to creep in. From the chaos her sons brain was in, it is now MORE organized than typical for his peers. With that being said, this may not be the end all be all, but I know it is a piece of the puzzle for now.
Side note about the choas/organization of the brain. In small group, we were just talking about chaos as related to allowing Satan free reign and how we can have victory over the chaos through intimacy with God. Going along the same lines of thinking with toxicity and sin, limiting the toxicity in her body will also help limit the chaos (avoiding sin limits chaos) I think I need to better gather all my thoughts about this to communicate it. Just thought I'd give you a little insight into my mind...Shawn always says I am an external processor! Lucky for you all reading this just wanting to know a bit about how Maggie is :)
Things to come...
Sweet Baby Girl turns one on Wednesday, May 15th! The Wednesday night meal at church is for little bug! This is a day we didn't know if we would ever be able to celebrate. Wear purple on Wednesday to celebrate and show your support. Take a picture in your purple and post it on the new Miracle 4 Maggie FB page we created!
Trip to Iowa for Aunt Nikki's high school graduation on Memorial Day weekend.
Grandma and Grandpa Leyen have also organized a benefit bike ride/birthday party/cruise party/just stop in to say hi party for Maggie and Uncle Steve. May 25 in Cedar Falls.
We registered Maggie as a consignor at the Just Consign It consignment sale the first weekend in June. If you are local and have treasures to part with, let us know when you can drop your stuff by our place. Shawn's putting a trailer in the shop for us to load everything directly on to. We will get it tagged and take it to the sale. Win-win....you can de-clutter while donating to Little Bug.
Big day at Vandy on June 5th...appointments with neurology, GI, and a new one for us, a metabolic specialist.
We will be headed to the Family Hope Center training conference in Philadelphia June 18-20.
