Three day weekend!

Dear friends and family,
I never get a day off much less three in a row. What a glorious weekend spending time with my husband and children. We started off on Saturday sleeping late and then going to Marcy Jo's restaurant to eat breakfast. Brody, Ian and Atlee were excellent and I was by myself. Bubba had set his jewelry up at Nolensville's women's show.
We then went to see Bubba at the show and Kroger, Baby's R Us, and a couple of other places. Everyone with a child with FX knows this is unheard of. Brody was amazing and we had the best time. We went to church on Sunday and then packed a picnic and rode around looking at our hometown on every road possible. It was very interesting with all the flooding we have.
Today we decided to celebrate Mother's Day and go to the Mexican restaurant and Brody was excellent again. What an amazing weekend we had.
Bubba, Ian, Atlee, Brody and Millo are the best.

Sign language...

Dear friends,
This week we had beautiful weather and we went to the walking trail with the kids. It was 82 degrees here. They absolutely loved it and so did Millo. We did not tether Brody to Millo and took him on a leash. Brody walked independently about a half of a mile. WOW! We were so pleased. Tethered to Millo I am sure that he would have gone farther, but we were tickled. He doesn't have the physical endurance yet to take him the whole way. He actually got excited and ran a little.
Afterwards we went to a friends' restaurant that is about to open. When he turned on the music in surround sound, Brody looked at me and signed "music" for the first time. Later he turned on a huge TV projector and Brody signed "happy" for the first time. It was awesome. They are teaching him pecs in school, but I think sign language is best. He gets confused on pec cards, but we are still doing total communication.
We just did an assessment at school for Brody and determined tentatively that he was multi-handicapped because he has FX, Autism, ADHD, hearing and vision loss and several other small things. They just need a place to put him and just FX cannot fall under "other health impaired" anymore. We will have an IEP within 40 days to decide on next year, determine his placement, summer school options, and curriculum for next year.
His party is well on the way with several more sponsors and silent auction items. Thank you to everyone. Vanderbilt has called and we may do a voice only interview with them about research and development of new medicines. Either us or a new friend of ours will do it. I will keep you posted. Until then ......bless you.

www.mammothjack.com

Dear friends and family,
Mammoth Jack has a new website. Please check them out as they will be playing for Brody's Benefit. His Birthday Bash is May 31st. Please save the date and invite your friends to come as we raise awareness of Fragile X Syndrome. Our sponsor list is growing and if you have anything to donate for the Silent Auction please let us know. We are expecting over 400 guests. The "cake lady" donated a 100 serving sheet cake today for his party and her time to do the cupcakes. WOW! What a blessing we have in friends.

Let it snow!

Well, we live in Tennessee and we have snow on the ground! It doesn't happen that often for us. Millo(Brody's service dog) woke me up at 5 this morning to go out in the snow. It is absolutely beautiful now and won't be when I have to go scrape it off the sidewalks at the hair salon. We have no hot water at the salon and no upstairs heat at home. None of this is related to the snow, just makes for a crazy day. This is an old photo of the salon but is the same amount of snow. We have a new sign now that you can see on www.saloncwcuts.blogspot.com.

Brody is doing great. His class have been split and life is good for him. He has 9 in his class and one teacher and two assistants. Bubba is a teacher's assistant at the same school so that is helpful too. He is petting Millo now and has accepted a sippy cup for toddlers that you have to push a button to use. Two new things this week that are awesome.

The Fragile X Association of Tennessee got declined the grant for a water park that we wanted to build in our community, so we will move forward on our own. Where there is a will, there is a way.

Sleepless in Tennessee

Well tonight we are up watching WALL E. Brody went to bed at his usual time of 7:30 and now we are awake. Instead of crying, we are up watching TV. Everyone except me and Brody are asleep. The kids and Bubba are all out of school tomorrow for the Thanksgiving holiday. Only I have to work and I am the one still wide awake. I may go to bed on the couch tonight if Brody is happier watching TV than sleeping. I am off this weekend to find some Melatonin as some of you suggested. The only way I have success with medicine for Brody is with a suppository though. Does anyone know if this medication is made in that form?
We have met online another child with FX that has a service dog. We are so excited to get to know the family. They are moving to Tennessee next year and we can't wait. We go back to our trainer in January to be re-certified. Millo is an awesome dog and they may do a story on us in the FX Quarterly.
Brody is non-verbal, in diapers, will be six in May, cute as a bug, and very happy. Is anyone older than Brody and still not talking? or in diapers? Brody is very social and loves to hug and kiss.

Camping at Henry Horton Park

Dear friends and family,
This weekend we celebrated my brother's birthday at Henry Horton Park. We took our camper down and enjoyed the weekend. Brody takes about 5 hours to adjust to a hotel room as it is not his environment. At that point, we decided to purchase a camper. Now we can travel and no problem for Brody. Millo is also very welcome at any campground and everyone is interested in a service dog. We met some wonderful people, Michael and Lara Jones and their children. They are called to New Zealand to do missionary work and I would ask that you include them in your prayers. Fragile X is something that we are called to advocate for and that is our mission. We are so grateful to have Brody and his brother and sister. We often get to share our story about adoption and we are so truly blessed by it with Ian and Atlee.

October 19, 2008 Brody Cesar Griffin

When we got our diagnosis of Fragile X Syndrome in March of 2006, we fastly became experts and teachers to help our son Brody. We have three soon to be six year olds in kindergarten all adopted from Guatemala. Brody has a service dog, Millo, who is a rescued golden retriever from Wilderwood Service Dogs in Maryville, Tn. Today I start his story.....