Tuesday, December 28, 2010

Cole had a good Christmas. He enjoyed giving presents to his Mema and Granddaddy Thomas.
He hugged everyone from Granny to Nana to Papaw.

He has made so much progress over the last few months. His vocabulary has increase ten fold and he talks in short sentences. He is learning everyday.

He plays with his little brother like any other little boy. They are quite a lively pair. His older sister, Erin, is constantly playing the little mother telling them what they can and can't do. She should mind as well as she expects Cole and Cale too.

His Nana and Papaw left early Christmas afternoon to visit Kirk's parents in North Carolina.
Cole and Cale wave bye-bye as Barbara and Kirk walked to their car. Cole continued to tell them bye, calling their names until they pulled out on to the road.

The children received many toys but seemed to want to play with the $2.00 ball. Cole was throwing the ball with quite good coordination. Hitting the outstretched arms of his Mema and Granddaddy Thomas with amazing accuracy and just the right amount of speed. He would then stretch out his arms and catch the ball. Catching the ball is something he did not do consistently just a few weeks ago. It is a marked improvement in his hand-eye coordination.

I know that every grandparent thinks they have the most special grandchildren, Marcia and I are no different. All ours are special, but you have to meet Cole, even if you do not know about his disorder you will find his smile infects you will hope and lifts your spirits.

Cole's future looks brighter, but we continue to support FRAXA in their attempt to meet the Doris Buffet Challenge. Ms. Buffet will match $500,000.00 if FRAXA can raise another $500,000.00 by Jan. 31, 2011.

Consider FRAXA.0rg or Easter Seals as you make your year end donations.

Tuesday, December 14, 2010

Cole came spend Saturday night with Granny and Pappy. Erin had stalyed last week. Maybe Cale will come next weekend.

He has come such a long way in just a short time. He is using more words and making sentences.
He seems to be able to make connections between things he did not a few weeks ago.

We went to visit Mamma, Gramma to Cole. He finally petted Mamma's dog, Scooter with a little encouragement. That was a minor miracle in itself. Only 2 weeks ago he ran and screamed at the site of Scooter. What is more encouraging, the next day while telling his Daddy what we had done, I ask Cole if he petted Gramma's dog. He nodded and said yep! I then ask what was Gramma's dog's name. He promptly said "Scooter".

These might seem like little things compare to another 4 year old, but it a great leap forward for Cole.

He played on the hill in front of the Cabin, riding a toy jeep down the hill and then pushing it back up.

I have fallen behind in my reading on Fragile X. Reconstruction of the house has seen to that.
So I don't have anything to report on that front today. Just wanted to let everyone that Cole is making progress. Our prayers and yours have most certainly help.

Please remember children's charities in your end of year donations and gifts.


Wednesday, December 8, 2010

I have to say that I have missed Cole and Cale. Since our housefire they have not been able to sleep over. Cole is coming this weekend to give it a try at Larry and Sharon's pondhouse.

Brandi and Barbara, Cole's Nana took Cole to Waycross to see a geneticist, I think is what you call him. He pretty much gave Brandi the same information she already had. But Brandi reported that she like the doctor.

Cole's vocabulary is increasing and he is still just a happy little boy, with an occasional flare up of his little temper. He and Cale play well together and seem to enjoy each others company.

I hope to have more to say next week. Thanks to everyone who has responded to the FRAXA
Doris Buffet Challenge.


Sunday, November 21, 2010

Cole was his usual self yesterday. Full of energy and thought Pappy was too. He was standing at the deck gate with Cale when I drove up and they both began to wave. Cole calling "Pappy, Pappy".

Boy if that want lift your day I don't know what will.

They both immediately led me to the swing set. "Swing Pappy, swing". They both swang and we sang the number songs. Cole did pretty good. Cale just smiled.

Cole, Cale and Erin have a puppy. Chris found a small puppy in the ditch and took it home. Cole told me the dog was "harley". He called, "come here, harley". Told me, "pet her, Pappy".
So I did. Cole seems to really like the puppy, Cale not so much.

We then went inside where their fatigued Granny was washing our clothes for the coming week.

It was not long before Cale pulled me to the door and said "outside". I ask if he wanted to go for a ride. He nodded and said, "yeah". Cole ran to the door saying "wanna drive, Pappy". Enough said and we headed to the truck.

When we got to the end of the drive, I began to turn left toward the dirt road to Ochlawilla Church. Cole spoke up immediately, "not that way". I said if you want to drive we have to go this way. He replied, "wanna drive". I turned on to the paved road and toward the dirt road.
As I made the left turn on the dirt road Cole was unbuckling his seatbelt and climbing over Cale.

"Drive, I wanna do it" he hollered. So I put him on my knee behind the wheel. He began to play with the turn signal and every other button on the dash with one hand, holding onto the steering wheel with the other. I told him to watch where you are going. He shot back, "watch the road".

We travel down the road to the forks and beyond to a turnaround point. I told Cole it was Cale's turn. Cale had been sitting calmly, sort of, waiting for a chance at the wheel. So Cole helped me turn the wheel as we backed up. "Backing up", "Cale's turn, Cale's turn" Cole repeated after me.

By this time Cale was jumping up and down wanting out of the seatbelt. Cole reluctantly but without much coaxing sat down in the seat and pulled out the seatbelt and I helped him buckle it.
Got Cale loose and put him behind the wheel. Cole said, "Cale, watch road".

We repeated this exchange a few times on the way back. When we got to the paved road I buckled them both back up. Then pulled toward their driveway. As I began to turn Cole said emphatically, "NO, NO, go to Granny's house". He missed his swing on the carport, it goes "higher, Pappy, higher" than the one in their yard. Cole loves to go high and fast.

Back in the house they brought me the throw pillows from the sofa, then Cole told me to "lay down" pointing to the floor. They both love to wrestle around on the floor and use me for a trampoline of sorts. Cole would tell everyone when it was their turn. "Erin's turn, Cale's turn", then "my turn" he would proclaim climbing up on my belly and saying "watch Pappy" as he stood up on my abdomen and bounced to the ground.

You can tell when something confuses him but his memory is good. I point to the trees along side the road and ask him what they were. He knew they were trees, but when I ask him what color the trees were he said red. I told him they were green. I ask the same question as we came back and he responded "green".

It was a great time with Cole and Cale.

Here is a link sent to me by June Lawson. It explains Fragile X and provides other information on promising research.

June's son is a Fragile X child, she has been very helpful and encouraging.

June is a supporter of Easter Seals and I am going to research their support of Fragile X.
Easter Seals has been around a long time supporting research and helping children with disabilities. Please consider Easter Seals as you make your holiday gifts this year.

See y'all next time.

Monday, November 15, 2010

I don't have much to report this week on Cole. Marcia went to their house to wash our clothes.
I had to run the QGMA final golf tournament. That along with the hassle as the consequence of our house fire, have really messed up our time with Cole, Cale and Erin.

Marcia did bring back a good report of Cole's talking and word associations. She said he greeted her with 'hi Granny, where's Pappy?" He told her he had "been sweet boy" and told her "I'm green" referring to pre-k. He had not been in trouble. Marcia said he talked constantly and wanted her to read his books to him. He and Cale are tough pair to handle. Marcia was worn out when she got back to the cabin.

I will have more to report on Cole next week for sure. Hope everyone will give it a look and keep him and all fragile X children in your thoughts and prayers. We are fortunate that Cole seems to have mild Fragile X syndrome. Some parents and families face much more dire circumstances.
A cure for Fragile X is possible and treatments are improving. Fragile X is a leading cause of Autism and between the two millions of children are affected.

There are no warning signs for Fragile X which is a genetic disorder or for Autism. It can happen to anyone's child.

There are many childhood disorders and diseases and all need our support through charities to fund research and treatments. The Sunshine Lady Challenge by the Doris Buffet Foundation will match funds up to $500,000.00 for all funds FRAX raises between now and January 31, 2011. In some way this will help my grandson, Cole Baker. It will help thousands of other families even more as they deal with a lifetime of supporting and caring for children debilitated by Fragile X Syndrome.

Please consider FRAXA.org as you make holiday gifts this year. Why give a tie or sweater when you can offer a the gift of a helping hand? If not FRAXA.org then one of the many children's charities such as St. Jude's hospital.

More about Cole and his progress next time.

Thanks for your time and we hope that everyone has a great holiday season.

Sunday, November 7, 2010

Spent Saturday morning with Cole, Cale and Erin at their home.

Cole saw me drive up from the patio door and I could hear him calling "pappy, pappy" as I reach the back door. I don't know who was smiling bigger him or me.

Marcia spent the entire day. We can't have them over at the house because of the fire so Marcia looked after the kids while Brandi went to work.

Cole has 9 stitches above his eye where he ran into the swing, he is just like his dad. He is accident prone. The fragile X may play some part in that but this is his second time getting stitches to his head from running into something. He goes 90 miles and hour all the time until he collapses.

He and Cale are now climbers, they climb on everything. Cale climbed on the kitchen table last week while she was in the den, she could hear Cole saying "get down, Cale". They both love to get in the chairs and jump down to the floor. I think Cole realizes that the kitchen table is a little to far from the floor. Which is good. Not sure how Cale would have got down without Marcia taking him off the table.

Marcia discovered Cole had a new book when he brought it to her for her to read to him. It is a Dr. Suess, One fish two fish, I think is the title. Marcia said Cole brought to her and said "read Granny". Then he said "one fish, two fish. When she open the book to read, Cole said one fish, two fish, red fish, blue fish point to the page.

He makes more and more associations between words and pictures everyday. I know that I am hopeful, but I try not to over read anything into things. But it seems that he is just waking up to words and putting them into place.

I will leave it at that and hope for more progress.

I write this as therapy for myself and in hopes it may someone else to help them find reason to have greater hope. I also write this in hope one person will see it and find it reason to make a small donation to FRAXA.org.

Thanks for your time and thoughts for Cole and his fellow Fragile X children.

Thursday, November 4, 2010

Haven't had a chance to post for several days. We had a house fire which has displaced us.

Cole is going to therapy twice a week. He is making progress. His word association seems to be better. This week when I had him in the swing and we were counting. He did something he had not done before. I have counted and he would repeat the numbers. Then I one say the numbers two at a time to get him to repeat two at a time. I said one, two and he said shoe, then 3,4 and he said "close the door", then 5,6 he said "sticks", then 7,8, he said "shut gate", then 9,10, he said, "do it gin".

I think this is a great sign. He is associating words with others.

He is still just a cute little boy and a real boy at that. Fell of the swing and went to ER for 9 stitches

As always please considered making a donation to FRAXA as gift or memorial to a freind


Friday, October 22, 2010

As you can see by the photos, Cole-man may well find the cure himself. The little fellow has been to the doctor's office so much he knows the routines. Funniest thing is to see him blow on that stethoscope before he puts it on your chest. Just like a good doctor does.

He is spending the week with his Nana and Papaw this week. So we want get to see him.

He has a cat now. Brandi can't keep the cat out of the house for Cole hauling him in. He calls his kitty. Which is a new word and a good association. Those are all good signs.

His motor skills are good and he certainly can work the DVD player. Wears me out picking him up to change those THOMAS dvds.

Got an email from Fraxa today. They have three drugs that are already licensed for other uses that are showing promising signs in tests. Several large pharma companies are working on new drugs as well.

Things are going well on the drive to raise the $500,000 for the DORIS BUFFETT SUNSHINE LADY CHALLENGE in which Ms. Buffett will match with another $500,000.

Doris Buffett is the sister of Warren Buffett the multi-billionaire. She give grants and funding to many charities and research projects.

Check it out if you get a chance.

Sunday, October 17, 2010

Cole and Cale Spent Saturday with Marcia and me. Cole is learning how to pout when he doesn't get his way, which is not very often. You can tell who is teaching him that tactic. His big sister.
His newest word is "corner". I am guessing he is spending some time in the "corner" for time out.
They played outside in the swings until I took the swings down so they, Cole and Cale, would do something different. They played in the sand pile and rode in their little cars.
Cole and I rode to the golf course. He was really upset by the dogs and jumped into my arms and just screamed. I don't know if this is because of the FX or if a dog has scared him. It has been almost two years since our dog Cocoa died. But Cole loved to pet and play with Cocoa. I will have to ask Barbara and Brandi about dogs.
Barbara is Cole's Nana. Cole loves Nana very much as well as his Papaw, Kirk.
Cole's Vocabulary is really expanding and his sentences are becoming longer. His pronunciations are better. He now pronounces "Thomas" clearly instead of "omas". He is repeating his ABC and counts to 10 with a little prompting. Cole seems to flap his arms less but he still tugs at his lip and ear when he is tired and ready for a nap or nitey-nite.
A newletter came from FRAXA that tests on a drug had shown promise in helping improve cognition in trials. That is a promising and hopeful development.
That is all for now. Thanks to all.

Thursday, October 14, 2010

This is my grandson, Cole. Cole is a Fragile X child. If you don't know what Fragile X disorder is you are not alone. A few weeks ago neither did I. Now I am trying to bring attention to the Fragile X Syndrome. Hopefully to help Cole as well as the thousands of other children and adults who have this disorder. To begin Cole's story I must tell part of mine.

I have seen my share of life's ups and downs and know that everyone has their share of bad times and personal tragedies as well.

In 1981 two events occurred in my family's life, my father died at age 53 under tragic circumstances. Five weeks later my youngest son was born and was a source of joy and healing to my wife, my other two sons and to myself. But the time to share his joy was short, he suddenly died seventeen months later. Life was dealing out tough cards for my family and me.

We regrouped and moved on, then in 1988 I was diagnosed with colon cancer at age 36. I had surgery and they remove section of my colon, a softball size tumor and 8 lymph glands. The cancer was present in 6 of the 8 lymph glands.

The oncologist gave me a grave prognosis. My chances of 5 year survival was 20% at best. Therapies and treatments at that time were mostly experimental. I chose to forgo the treatments.

My son Ben was one and a half years from graduation from high school and Chris was three and half from doing the same. I did not know if I would live a year much less three and half. At that point I ask God to give me the time to get them both through high school and into college and I would ask for nothing more.

Then my wife's mother was diagnosed with lung cancer and within a few months she was gone. She had been the rock I had pegged my families future on if and when I died. She was an incredibly strong woman mentally and spiritually. I could not tell my wife but I was devastated as she had been dealing with both of us for a year and a half. Who would take care of my family? It was then I recognized that my Wife was as strong as her mother and had been the rock for both of us.

I was now a year and half from diagnosis and surgery. I questioned why would such a good person be taken and yet I continued to survive.

Then came Chris's graduation and Ben was doing well in college and my cancer was still at bay and had not shown up elsewhere. I was doing well.

Now to what all this has to do with Cole, Fragile X and me. I am getting there. Marica and I have four precious grandchildren. Our oldest, Andrew, is Ben's son and he looks just like his daddy and will always be special because his was the first grandchild. Our second grandchild was Erin and the little girl Marcia always wanted. Then came Cole and Cale. Cale is a precious little boy with the biggest grin, but Cole was a carbon copy of his Uncle Jay that died so many years ago right down to the blond hair and sheepish grin..

Cole was special from first sight in a way you cannot explain with words, but everyone who met him could feel it. For me he filled a big portion of the void in my heart. We knew he was a little different and he was not progressing as he should. But then came the diagnosis and then the long range outlook. Through all our travails, I had always seen a way forward and a way I could resolve the problems. Now for the first time I felt at a loss. Here was a beautiful child who would face challenges in his life far after the time I leave this earth. I cannot express the despair I felt.

Now for almost 20 years I had wondered why I am still here. I had only ask for a few years to complete a task. The task was completed and yet the years continued to roll by and relatively uneventful. Early in the morning after a few days of being a little more than depressed over Cole's diagnosis and prognosis a voice from inside me said, "this is why". I rolled over and woke Marcia, who as always was the rock I lean on. I told her I know why now. God knew that Cole would need me.

I am still here so I can help Cole. To help Cole I must help the Fragile X Foundation. There is a lack of funding for Fragile X research because it is relatively rare and it is not a fatal disorder although it can be seriously debilitating. I will not try to explain Fragile X syndrome here. Below is a link to the website that will do that if you wish to learn about it. But more importantly it will allow you to offer support to research and trials to find treatments and hopefully a cure.

You will find the FRAXA is trying to raise $250,000 to recieve matching funds from Doris Buffet's Sunshine Lady Foundation. No donation is to small and it will be doubled when the goal is met.

I don't know how I will help Cole in the future, but this is how I am helping today.
I hope you will find it in your heart to help Cole as well.

Thank you, so very much.