The Griffin Adventures: FRIDAY......

Friday, June 14, 2013

FRIDAY......

Dear friends and family,
I want to encourage you to spend more time with your children and family. We are never guaranteed tomorrow. Life is what you make of it and living it to the fullest. We like to affectionately call our "The Griffin Adventures". Today Brody came to work with us so the babysitter could take the other children to the movies and to Civitan Park. I want this to be the best summer ever for them and so far it has been. We are enjoying the camper to the fullest.
Brody has had a great summer and is doing well with very little routine. We function best during the school year with routine, but during the summer it is all about Ian and Atlee and shooting from the hip. They have had opportunities that are hard to plan for and we want them to be able to do it. We are definitely making memories.
Bubba is making jewelry 24/7 in order to keep up with orders. We have two BIG shows left this year and several small ones. Keep us in your prayers that we can maintain our health.
Blessings,
Wendy

1 comment:

Aging Ophelia said...: Blog-hopping, I happened upon your page here.

Your story moves me, and I hope Brody continues to grow in his ability to communicate-- if he can express feelings, thoughts, desires, what else is there, really? Those are the essentials.

Peace, Mari; June 16, 2013 at 11:27 AM

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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