The Griffin Adventures: Happy Easter!

Tuesday, March 29, 2016

Happy Easter!

We absolutely had the best Easter ever! We started out the day headed to the flea market at Mountain Top but it was raining. We headed on over to Piedmont to The Learning Tree to meet up with Brody and his caregiver Dalton. There are three boys and their caregivers on Saturday and Sunday during the day at the group home. They work 15 hour shifts and are great to the boys. Denzel is about 7 feet tall with dreads and we asked him to dunk the basketball for Atlee and she was so excited. He is the caregiver for Camen and he is awesome. Teno was chasing Hunter(with a cast/book on) all over the place. He is a great guy with a mouth full of metal and always a great smile.

We took Brody and Dalton to a sweet church just down the road called New Hopewell Baptist. Ian and Atlee loved Dalton and I loved Dalton with Brody. They had an amazing chemistry. He was very attentive and had m&m's, orange juice and an extra iPad if needed. We made it through the the church service like a champ and everyone was so kind to us. They invited us back to visit again.

We went to a Mexican restaurant for lunch and it was delicious. Brody used his iPad to tell Dalton what he wanted. That was way cool. He was slow and steady and did not overeat. Because he was perfect, he was awarded his iPad after lunch. We drove on back and Brody hopped in bed and waved us by. It really doesn't get any better than that. They ALL love him!

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The Top Ten Things You Should Know About Fragile X Syndrome

By Mary Beth Langan and Sally Nantais

1. It’s genetic.
2. If a woman is a carrier, she has a 50/50 chance of passing it on to her son(s) or daughter(s). 1 in 100 to 200 women are carriers **.
3. If a man is a carrier he will pass it only to his daughter(s), and they will only be carriers. 1 in 800 men are carriers.
4. Fragile X Syndrome does not discriminate; it doesn’t care which ethnic group you belong to.
5. Fragile X Syndrome is a spectrum disorder. Symptoms may vary from mild learning disabilities (including shyness and social anxiety) to severe cognitive impairment (mental retardation).
6. Premature Ovarian Failure, more commonly known as early menopause, is a condition that affects 20-28% of the female FXS carrier population.
7. Fragile X-associated Tremor/Ataxia Syndrome (FXTAS), discovered in 2001, is a neurological disorder that can involve tremors, balance irregularities, difficulty walking and dementia which sadly is often misdiagnosed as Parkinson's and/or Alzheimer’s. This condition is present in some older FXS carriers (typically after the age of fifty), usually in males but FXTAS can also affect female carriers.
8. There are minor physical traits noted in many persons with Fragile X Syndrome, but not in all. These are traits which may also be present within the typical population, nothing unique which would necessarily indicate FXS testing is necessary for your child.
9. When testing for Fragile X Syndrome (FXS), it is critical that the correct tests are ordered – the Fragile X DNA (Southern Blot) and PCR analysis. Inaccurate results occur far too often with the generic chromosomal panel. Test for FXS to obtain a diagnosis or to rule it out. If you don’t have what may be the correct diagnosis of FXS, then you will never be aware of improved treatments or the cure when it’s found.
10. Where to go for the most accurate and up-to-date information on fragile X syndrome:http://www.fragilex.org/, the National Fragile X Foundationhttp://www.fraxa.org/, Fraxa Research Foundationhttp://www.conquerfragilex.org/, Conquer Fragile X Foundation** American Academy of Family Physicians, News and Publications, Vol. 72/No. 1 (July 1, 2005) http://www.aafp.org/afp/20050701/111.html
Mary Beth Langan and Sally Nantais are both Fragile X Syndrome carriers; each has a son with Fragile X Syndrome. They can be contacted at mblangan@hotmail.com and sally_nada@juno.com