Posted by: Sarah Trost in Uncategorized No Comments »

Taken by angel mommy in Puerta Valarta

Thank you!!!

Be happy and whole, dear Jacob

Posted by: Sarah Trost in Uncategorized No Comments »

A friend of mine recently lost her little boy, Jacob, to a tumor on his brain stem.  Please join me in praying for his family, as it is those who are left behind who feel the pain and sting of death.  Those with Jesus are eternally glorified and I’m sure he’s excited to get to know his “big” sister.

TAYLOR, Jacob Matthew age 9 of Deer Park, Ohio passed peacefully Sunday morning, March 21, 2010 at home with his family by his side. Born August 17, 2000 in Cincinnati, Ohio, Jacob was the son of Ryan and Tiffany (Taylor) Hering and a 4th grade student at Amity Elementary School in Deer Park. Jacob was a loving son, brother and grandson who enjoyed playing football (an avid New England Patriots fan) and playing video games. In May of 2009, Jacob was diagnosed with an inoperable brain tumor called a brain stem glioma or a Diffuse Intrinsic Pontine Glioma. In the months to follow his diagnosis, Jacob made several exciting trips – his Make A Wish Trip to Disney World, a trip to Alaska, a trip to the Sugar Bowl and to a New England Patriots Play-Off Game where he sat 5 rows back from Tom Brady. Jacob was a member of the U.S. Skydiving Team and U.S. Parachute Association. Preceded in death by his baby sister Abigail; Jacob leaves behind his loving and caring parents – Ryan and Tiffany (Taylor) Hering, brothers – Nathan and Sam and sister Molly all of Deer Park, Ohio; maternal grandmother Kathy Taylor of Loveland, Ohio, maternal grandfather Russ (Joanne) Taylor; maternal great grandparents Bill and Cheri Jones; uncle Jeffrey Taylor and many other family members, classmates, friends and neighbors. Friends may call on the family Tuesday evening, March 23, 2010 from 4:30pm until 6:30pm at the Fellowship Baptist Church in Maineville, Ohio. Funeral services will be held at 7:00pm at the church with Pastors Ron Corbin and Barbara Schnecker officiating. The family has requested memorial donations be directed to The Cure Starts Now, 10280 Chester Road, Cincinnati, Ohio 45215. www.thecurestartsnow.org The family also wishes to thank the doctors and staff of Childrens Medical Center, Cincinnati for their compassionate care and the Fast Trax Skydiving Team for their special friendship with Jacob. Arrangements have been entrusted to STINE Kilburn Funeral Home, 801 Monroe Road, Lebanon, Ohio 45036. More information about Jacob`s story may be found by visiting jacobmatthewtaylor.com.

Happy Heavenly Birthday

Posted by: Sarah Trost in stillbirth/pregnancy loss No Comments »

a new addition to the song

Posted by: Sarah Trost in Being Mommy, Family No Comments »

My girls have added a few verses to the song Old McDonald you probably haven’t heard before, and I blogged about them previously.  Well, here’s a new one! Background on it- one of the chemo side effects is diarrhea and gas, so consider yourself forewarned!

Old McDonld had a farm E I E I O.  And on his farm he had a Daddy.  E I E I O.  With a fart fart here and a fart fart there, here a fart, there a fart, everywhere a fart fart.  Old McDonald had a farm E I E I O.

why it’s not the same thing

Posted by: Sarah Trost in autism/asperger's, Family, health, Today in the News No Comments »

A good friend of mine suggested that it’s a good thing for AS/ASD to be not so widely diagnosed because the extremely wide spread diagnosis of ADD/ADHD and other disorders and over medication has become an overwhelming concern and problem to many (I have read that most children in foster care are taking at least three psychiatric medications for PRIMARILY ADD.)

I completely agree that this is a problem that needs to be addressed and a solution found. However, AS/ASD is more likely to be under-diagnosed, and typically unmediated. Here is the reply I sent to her.

AS and ASD have no common medications prescribed because there is nothing recommended specifically for AS/ASD. Children and adults on the autism spectrum may be given something for anxiety, OCD, PTSD, insomnia, ect but those are independent of the autism diagnosis, considered to be comorbid syndromes. Medical insurance does not typically pay for anything related to AS/ASD such as speech therapy, occupational therapy, or behavioral therapy because it’s not considered a curable disorder. However, with a diagnosis, children and adults may qualify for special services through the schools and colleges (such as speech and OT, ABA or other therapies) and accommodations (like a quiet place to test with extra time, a special aid, ect.) They may also qualify for Medicaid and SSI, which helps the parents as well as the children with therapies and medical bills. Most on the spectrum are unable to support themselves, so SSI is very helpful for that. ASDs come with all kinds of health issues as it is strongly linked to auto immune disorders. The body begins to attack itself. Candida, food sensitivities ect can be very costly. As it is a neurological disorder, epilepsy and other disorders may also affect the person. A child or adult with autism who gets SSI will get also Medicaid. There’s also respite care for parents to get a babysitter to help care for their child with special needs while they get a much needed break.

There are DAN! doctors (Defeat Autism Now) who understand nutrition and all the ins and outs of ASDs and while there aren’t very many of them, there are a lot of people helped by them. Early intervention and nutritional help ect is out there for those who get a diagnosis. Also, without a diagnosis those on the autism spectrum are very badly treated because they are just ‘difficult’ or ‘morons’ or ‘lazy’ instead of people with a disability who may need extra help. Imagine if a child is never diagnosed as deaf. What would his parents think of him? How would others around him treat him? How would he feel? He would certainly never be taught sign language, so he would be unable to express himself. It also leaves parents helpless to know what to do with their child. In the course of ASDs, a diagnosis is definitely very helpful. In fact, if we didn’t know that Kailey and I have AS our lives would be much worse now. I wouldn’t even have them on a gluten free diet and it’s very possible that Bethany and Taryn wouldn’t be talking. I may have continued vaccinating Kaitlyn, and who knows what she would be like now. But with the new diagnostic criteria, I don’t think we’d be diagnosed. We don’t actually have the official diagnoses as although we could have received it easily enough I chose not to because I thought that could come later if need be. Now, with the new diagnostic criteria, that might not be possible.

An excellent blog on a child with AS that was not diagnosed until later is here (if you can view it through mamapedia, if not let me know and I can copy it.) http://www.mamapedia.com/voices/bright-child-with-asperger-tick-s I’m sure there are plenty of responses of similar stories there.