The Griffin Adventures: The Griffin Adventures......August

Saturday, August 11, 2012

The Griffin Adventures......August

Dear friends and family,

We are ecstatic about the new school year starting as Brody will be at the age appropriate school with Ian and Atlee. They will all be fourth graders this year. We are so excited because children with Fragile X learn incidentally and imitatively. It will help for him to be with his peers and learn from them. It also fulfills our commitment to "keep Brody from being invisible." We have always said the Brody was a child first then a child with a disability. It is so encouraging to us to be out in the community and for someone to say, "oh, that is Brody or Hi Brody".

Ian is Brody's caregiver now and Atlee wants Brody to live with her when they are older. The other night when I had reached my maximum patience, Ian took over and asked if there was anything he could do for Brody. I asked him to tuck him in and say his prayers. It was so sweet. It sort of fills up your love tank.

We went fishing this week on a friends boat and Brody loved it when we were running BUT not when we stopped. Our friend learned to gradually slow the boat down and then Brody did great when it stopped. It was an amazing time with the kids as Atlee caught most of the fish. We cleaned them and cooked them that night. I think Ian likes store bought "fish sticks" better. LOL

Atlee is taking guitar lessons and is singing all of her free time away! She is really good and we are so proud of her. Ian is still into LEGOS and loving it. He wants to be an engineer for LEGO. Atlee has already told us when she gets famous that she will buy us a big house again. Sweet girl. I hope she does become famous but I want to be with her on the famous trail so I guess we will settle for a great RV!
Happy Anniversary to Bubba on September 8th! It has been an amazing 11 years!

This is Rick Guidotti who took Brody's pictures at the International Fragile X Conference in Miami.

Guitar string earrings that Bubba makes.

Family fun day with Brody watching from the side.

Sabrina's two beautiful children Madison and Emerson.

Ian's cool do for school.

Brody and his first love.....the Ipad.

Atlee and her Nanny on the way to cowboy church.

Brody's first time to ride the escalators.

Mom and Jim are well and I ask you to keep them in your prayers for continued good health. Ma Baker and Betty hold a special place in our hearts and we have been so blessed to have them a part of our adventures. Fred and Sabrina are doing great and making us so proud. Madison, Emerson and Logan are growing so fast. We love them so much. Jacob is an ALL STAR and going to be the next "Bubba" baseball hero. Good job Jacob. We love our family and miss everyone. Life is good here in Alabama. I would love to say to everyone, SLOW DOWN and go fishing once in a while.

Blessings,
Wendy

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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