at the point when i withdrew the boys from public school for homeschool i had many people thinking i was crazy, i was one of them. mikey had ocupational therapy 2 times a week that i was dragging him out of school for, plus any out of town appointments he, chance or zach had, so i reasoned with myself that he was missing to much school as well, and he was. zach had therapy coming out to the house 4-5 times a week, plus his doctor appointments, the boys had their psychologist and developmentalist they were seeing plus the normal appointments. life was crazy, and here i was adding fuel to the fire. sigh.
its been a few months since homeschooling has started, and things still get a bit scattered about but were making it. mikey has sence been diagnosed with high functioning autism/asperger's, in addition to the SPD, ADHD, and sleep disturbances, chance had his iq tested at 4 and scored for a 5 year old at the 98%, i was told by the psychologist he was VERY advanced and was genius-like. he is also being tested for being somewhere on the spectrum of autism, or a mood disorder, he is being treated for ADHD in addition to his sleep problems, we still battle with his asthma and him getting croup each season. Zach has remained well and is doing better each day. in june 2009 just a couple months before he turned 2 he sat up on his own! in july he was crawling, and saying mama!! we were sooo happy. he was hitting milestones. he is still fed thru his gtube, he has recently been taken off many of his medications, only taking previcid, pulmicort, viagra, and diuril now. thats a small handful compared to his 13ish when he first came home. he is trying to pull up and walking small steps in a gait trainer. his diagnosis' are chronic lung disease, restrictive airway disease, pulmonary hypertension, pulmonary hypoplasia, repaired congenital diaphragmatic hernia, repaired subdural hematoma, gtube fed, scoliosis, 33 week preemie, hypotonic, brain atrophy, microcephaly, severe global developmental delay. compared to where he was a year ago he has come so far and will continue to thrive!
with all the changes life has thrown our way in the last 10 years my outlook has changed and my opinion on life has changed. i have new stressors that replace what i use to think of as stress. but i have new rewards in my life that make me glad each day i have with them.
with all the issues zach has with his lungs we dont use chemical cleaners in the house anymore, mainly vinegar and baking soda, for everything. its much healthier for us all. were trying to eat healthier, im even learning recipes for making things from scratch. were trying to eliminate our processed foods, rid ourself of those toxins and be more mindful of the enviorment. zach still recieves his RSV shots for the seasons sept thru april due to his fragile lungs but we have decided other than that and his hep shots due to the frequent blood transfusions he has had in the past and may need in the future the boys and us will no longer be immunized with anything. after finally doing our own research on the chemicals in the shots we have decided we dont feel comfortable injecting the posions to our kids. im not sure if any of the shots may have helped to contribute to the autism spectrum disorders or not, but i know now that its not right for us.
so in all after all the rambling, thank you for being so patient, our journey has led me to this path, one where i want to protect our family from everything i can. i want to make our own food, school our children, not vacinate them, keep them away from as many chemicals as possible, some say im trying to live in a bubble... and i will agree. but its my bubble, im not insisting anyone join us, so dont pop my bubble:)
ive become more outspoken, i know more about medical mumbo jumbo than i ever thought was possible, im learning how to stand up for what we feel, without worring is everyone going to be okay with our decisions, im learning how to be more self sufficient, trying to grow our container garden, stock up on food items we can use in case of an emergency, im addicted to couponing, i love sale shopping and thrift shopping, i enjoy making food from scratch now. i enjoy homeschooling the boys...this is the new me. i think i have found my calling with my boys and all their medical mumbo jumbo....................
1 comment:
What an amazing, amazing story and a testament to your strength and courage and commitment as a mother. I am a mom to a CDH survivor/premie but she is my only child right now and I can only imagine everything you have been through. Yet you have three amazing, beautiful, unique boys ... how lucky! Many prayers for good days and good progress!
Hugs,
Jennifer
Mom to Dakota 12-25-2008
RCDH survivor
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