Precerpt from Raising God's Rainbow Makers: Doah's Blood Pressure
When Doah got to be a buig boy, as in his 30s (an achievement for CHARGE Syndrome; children were still struggling to make it past age 5 at that time), his blood pressure went kaflooey. That is the only way to describe it.
Most, it shot up at unexpected times, way up. Sometimes 200+/100+. At least, those were the figures that would prompt me to chase him into the car and drive him off to the local ER. These figures, mind you, were occurring in spite of two daily doses of clonidine and an additional morning does of losartan.
Doah always knows when something is wrong. He lies on the couch and says he is dizzy. Or, if he is in the car, he says he is dizzy and wants to stop and throw up. He knows. When I take his BP, he is right -- it is always very elevated at those times.
Getting it under control was not easy, even in the ER. One time, the doctor gave him 5 times the normal dosage of clonidine and after eight hours sent us home with still elevated pressure and told me to give Doah another clonidine if it was still elevated when we got home.
Then his doctor gave me a bottle of high-powered pills. They were to be given only when Doah's BP exceeded 200/100.
No, no, no. This was not a livable routine, regime, or life, or anything else. It had to stop. And it did, finally.
Doah lost 20 pounds, with the help of a dietitian at Stanford University Hospital and a gym in Hollister. Doah did not look obese. Robust is what most people, including doctors, called him. But he was obese, and he loved foods rich in sodium. As his weight and sodium int intake decreased, so did his BP and his cholesterol. The latter dropped to normal. The former stayed even-keeled normal with the meds. I never did have to use those high-powered pills.
One interesting outcome: Doah now occasionally has low blood pressure. The same dizzy spells but for a different reason. But those are easy to control. A snack of saltine crackers and ham does the trick nearly within minutes.
Yep, Doah is very sensitive to sodium. That can work against him or for him. We make it work for him.
Book Description:
Raising God's Rainbow Makers
A Family Memoir of Grace, Grit, and Growing Up Different
What happens when a military family welcomes four children—each with wildly different needs—into a world not always built to support them?
In Raising God’s Rainbow Makers, one mother shares the remarkable journey of raising two children with complex disabilities—one with spina bifida, one with CHARGE Syndrome—and two intellectually gifted children, all born in different states during years of military life. Through medical crises, educational challenges, and societal roadblocks (both intentional and unintentional), this honest and inspiring memoir tells the story of how one family built a life of strength, compassion, and resilience.
With warmth and unflinching honesty, the author reflects on emergency surgeries, IEP battles, unexpected victories, and the fierce sibling bonds that formed in the face of it all. The children—now grown—bear witness to the power of support, faith, and never giving up.
This is not just a story of survival. It is a celebration of difference, a chronicle of hope, and a powerful testament to what love and determination can build when the world says "impossible."
Keywords:
Parenting memoir; Special needs parenting; Raising children with disabilities; Military family life; Family resilience; Inspirational family story; Faith-based memoir; Coping with medical challenges; Sibling support stories; Gifted children; Spina bifida; CHARGE Syndrome; Hydrocephalus; Congenital disabilities; Complex medical needs; Pediatric neurosurgery; IEP and special education; Gifted education; Educational advocacy; Inclusive education; Hope and healing; Courage and strength; Love and perseverance; Raising different children; Disability acceptance; Parenting through adversity; Overcoming barriers; Finding joy in hardship; Special needs journey; Family unity and support; For parents of disabled children; For parents of gifted children; For educators and therapists; Christian parenting memoir; For families facing rare diagnoses; Real-life parenting stories; Memoirs about raising children; Stories of medical miracles
For more posts about Elizabeth and her books, click HERE.
Read more stories -- and photos -- about the Mahlou family in the blog (no longer maintained), Clan of Mahlou.
has gained mass recognition for releasing highly acclaimed books of varying genres
that are distributed internationally. Check us out on Wikitia.
To purchase copies of any MSI Press book at 25% discount,
use code FF25 at MSI Press webstore.
Want to read an MSI Press book and not have to pay for it?
(1) Ask your local library to purchase and shelve it.
(2) Ask us for a review copy; we love to have our books reviewed.
VISIT OUR WEBSITE TO LEARN MORE ABOUT ALL OUR AUTHORS AND TITLES.
Sign up for the MSI Press LLC monthly newsletter: get inside information before others see it and access to additional book content(recent releases, sales/discounts, awards, reviews, Amazon top 100 list, links to precerpts/excerpts, author advice, and more)Check out recent issues.
Turned away by other publishers because you are a first-time author and/or do not have a strong platform yet? If you have a strong manuscript, San Juan Books, our hybrid publishing division, may be able to help. Ask us. Check out more information at www.msipress.com.
Planning on self-publishing and don't know where to start? Our author au pair services will mentor you through the process. See what we can do for your at www.msipress.com.
Interested in receiving a free copy of this or any MSI Press LLC book in exchange for reviewing a current or forthcoming MSI Press LLC book? Contact editor@msipress.com.
Want an author-signed copy of this book? Purchase the book at 25% discount (use coupon code FF25) and concurrently send a written request to orders@msipress.com.Julia Aziz, signing her book, Lessons of Labor, at an event at Book People in Austin, Texas.
Want to communicate with one of our authors? You can! Find their contact information on our Authors' Pages.Steven Greenebaum, author of award-winning books, An Afternoon's Discussion and One Family: Indivisible, talking to a reader at Barnes & Noble in Gilroy, California.MSI Press is ranked among the top publishers in California.
Check out our rankings -- and more -- HERE.
Comments
Post a Comment