OK - so I'm thinking I need to speed this along or this is going to turn into a novel. Brei is 3 1/2 and we venture to Oklahoma during Christmas/New years. My wonderful aunt Beverly and I have this amazing chat while there about health, eating healthy, organic etc etc whole foods, etc etc, supplements etc. She has chron's disease and has battled intestinal health issues for much of her life. She has experience and a wealth of ideas for me. All of which I'm very open to by now. I have this little support group, I'm meeting people walking a similar path and I'm renewed in Christ and have let him have Brei's health. So I'm just his instrument now and It's so much better being his instrument and letting him control my life than me trying to control my own life and Brei's. I can't really keep up on my own and it's about time I finally faced it. So, I've given it all to God and my burden seems much lighter. I came back to Ohio refreshed and ready to go to battle. I prayed all the time. I prayed before, but not like now. I mean, I was praying like a warrior mother who used every ounce of energy in my prayers. I prayed that God heal her sickness and help her grow. I read 2 books that started my holistic treatment journey.....
1. Jordan Rubin's - The Maker's Diet
2. Sally Fallon's - Nourishing Traditions
So we started slow....we bought all organic food for Brei's diet - it was still baby food but it was organic and we added coconut oil and took out the formula - I had researched all of the ingredients on the back of her formula can and realized I couldn't pronounce half of it so we tried to use less of it. We were still needing night feeds so we used it only for night feeds. The boluses during the day consisted of high fat/calorie organic baby foods that we bought in bulk at Whole Foods. We blended them down, added butter and coconut oil and she started to grow. That was exciting because we hadn't seen much growth as far is that stinking growth chart was concerned. We continued on that path nutritionally until 2008.
Medically we were kind of at a stand still. We had all of these diagnosis that we were sorting out, we were in OT, PT and SPT weekly. Our SPT was working on oral motor along with the speech and language. All of a sudden we were out of Help Me Grow and right into IEP's and preschool. What??????????? Didn't I just get to where I was navigating the system pretty well, I knew all the lingo the docs were throwing at me and I was confident to challenge docs and nurses to get the testing I wanted, I was learning the lingo of the organic and holistic world, I could talk supplements, probiotics and intestinal health with the best of them...but IEP's...What? That was just more than I could take. But I'm not a quitter and I just don't sit back, I want in the game. So my hubby and I dove in head first researching IEP's and learning to write them. When I look back at her first IEP, it was bad, we weren't confident enough at the time to really advocate for her needs, we kind of let the school write it for us. Good news is, we are in a good school district who takes special needs/special education very seriously. So, though it wasn't written that great and her goals were so so....It was a start. And now we are in school.....Full force! This was so different than when Davis went to school. I mean, he can come home and tell me who his friends are, what he learned, if he was treated nice by the kids etc. She can't. Oh man! This was hard on me. I mean really hard. I became a regular face in the classroom. Not because I didn't trust the teachers/aides to do their job, but because in order for me to navigate her educational system I had to be there looking at everything, seeing what would work best for her, what needed changed etc. So I volunteered for a lot of things that year. Thank goodness for my amazing neighbor who traded babysitting time back and forth so we could both volunteer at school. Thank you Evelina, you are Godsend. I will never be able to give you half of what you have given me in a friend. You are a blessing. And your children, they love Brei unconditionally and she knows that. Your family is a gift to us.
So - earlier I mentioned autism....yes, I'm saying it again. When Brei got into her 2nd year of preschool at Clinton Massie I started seeing some Autism....I didn't want to but I had to face reality and if I wanted her to reach her fullest potential I had to say Autism out loud and deal with the consequences. By now, I have amazing warrior mommy friends in our support group where I could go and say it out loud and they would tell me it's gonna be ok. Thank you Jenifer, Jessie, Holly, Deb, Tonya and Niki. So, being the mom that I am, and Barry being the dad that he is...we knew we just couldn't throw the word autism around and not dive in and do our research and get going on interventions. Some people said....aren't you doing enough interventions? Well, yes, I mean we were...but when you have a child with that many deficits and now she's banging her head and licking floors and having social troubles....you have no choice but to go the distance and DO MORE! So, thanks to friends with kids with autism who were already going to an autism specialist in Columbus the road had kind of been paved. We would all go on this new journey together.
And what a journey...at the first appointment we came home with 9 kits for home medical testing and directions for how to send them overnight to Doctor's Data. These tests were looking for toxic metals, yeast, and whether or not she's absorbing any of the nutrition in her body. Oh man, this is what I had been waiting for, answers to how her body was really working. I wasn't prepared for some of the results. Mercury, high levels, I mean, off the page and lead and other heavy metals and toxins. We were in for a whole new world now. We had to get her yeast under control, completely detox her off of gluten and casein, chelate to get rid of the Mercury that was taking over her body and get her intestines back on track. Needless to say, we were on a whole new nutritional ride......................(see part 5 for recipe)
So after all of that....it's 2011 - we've been with Dr. Demio for 2 years, we have a kid that's growing and she's actually starting to say some words, she's eating a few things by mouth (99% of her nutrition is the g-tube) and we have a whole new lease on life. Brei is in 1st grade at Clinton Massie and she has a full time aide, she's in the multi-handicapped unit where she has some amazing friends. She's very popular at her school because she's friendly, adorable and has this smile that will make the grumpiest of folks in a better mood. She is the happiest person I've ever met. Nothing gets her down, I mean nothing. After all of the surgeries and tests and hard work to get where she is today she's not down about it. She's a tough cookie. She teaches me everyday how to be the best version of myself that I can. She inspires me to focus on what's good in people and the world. She's in OT, PT and SPT at Mason and Liberty TWP and also has services through the school. She's also serviced by autism intervention at Hopewell that comes to the school weekly to help with interventions with social, sensory, educational etc. We've learned to navigate the educational system and speak that lingo too. We followup with her specialists every 6 months and go through a new pair of glasses an average of once every 6 weeks :) Thank you for letting me share Brei's story with you. I appreciate all of the support and encouragement I've received.
Our support group is off the ground and will celebrate the 5th anniversary of Little Hearts Big Smiles in August. You can check us out at http://www.littleheartsbigsmiles.org/
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