Sunday, February 27, 2011

Well it is the morning after. Cole and Cale came for the day yesterday and they were two balls of energy.

Marcia made breakfast for them and the scoffed it down and then wanted to take a bath of all things. So they splished and splashed in the tub for about thirty minutes. Both attempting to dog paddle in the 3 inch deep water. Cole loves to put his head underwater. Which is a bit scary but he always pops up after 10 or 15 seconds. Of course Marcia and I both got a good shower in the process.

Let the water out and got them both out. While in the process of drying Cole off I looked around to find Cale had climbed back and was turning on the water. That one loves to climb everything.

We moved outside as it was becoming a beautiful Saturday morning. Cole got into his little push car and made a few trips up and down the drive before he remembered the swings. I had hung two swings on the carport and had took the swings down after the fire but had bundled the chains around the hooks to get them out of the way.

Cole pulled his car up under the chains and pointed upward. "Swing, Pappy, swing. So our morning activity was set. I gathered up the swings and re-hung them. Cole jumped in and buckled himself in like it was just yesterday he had his last swinging session. Cale did as well. Both yelled "yeah...." as the pushed the locks in on the straps, clapping and bouncing up and down.

Cole told me to "push, Pappy" I did and then he said, "higher pappy". At that point he told me, "down, Pappy, I want down." I was a little perplexed that he was tired of swinging so quickly. I took him out and he went over to Cale's swing. "Cale out, Cale out". Cale just like me not knowing what was going on but wanting to do what ever his big brother was going to do said "yep, I 'ont down".

Well as soon as Cale was out of the swing Cole jumped in and began to lock himself in. Then I knew. Cole loves to kick at the ceiling fan on the carport and he couldn't do it from the other swing. So after the exchange of swings we spent the next hour swinging and aggravating Granny(Marcia) everytime he would go high enough to hit the fan blade with his foot. But even she fell victim to his infectious laugh every time would do it.

Cale on he other hand was content to just go back and forth and sing his little songs in that "alien" language.

We made it to lunch and then went on a ride to T'ville. They both laughed and carried on. Cale sang "paddycake" and Cole talked about his favorite thing, "Thomas and Friends". Back home about an hour later and back into the swings for another hour or so. Both are learning to propel themselves but I think they are holding back because they had rather their "Pappy" push them.

Once back inside for hopefully a nap Cale brought a pillow to the center of the den floor and signaled for me to once again become the human trampoline. For the next 30 minutes the jump, roll over and ride on me as I lie on the floor. Cole calls out between each attack on my anatomy, "Cale's turn, me turn". Amazingly they wait for the other to make their dive bomb attack before making their own run.

Cole and Cale show now jealousy. After the session on the floor I climbed bruised and battered into my recliner. Cole soon climbs in too with his Thomas book. "Read Thomas, Pappy". Then he calls, "Cale, Pappy lap" and Cale climbs in as well. Cole turns the pages and we read. Cale loses interest and climbs down to play with his blocks. Cole continues to turn the pages and point out and name all the characters and animals.

They are both making progress with their speech and communications. Cale talks constantly and he is more understandble. Cole is using more and more short sentences to ask for things and to tell you what he wants. Cole is a long ways from where he was just a year ago. Cale is catching up in a hurry as well.

Oh, we got a small tv with a built in DVD player. Cole was rough on the little DVD players. Taking the DVDs in and out all the time he would break the tray. We thought that the hidden slot for the DVDs would be just the cure for this. Well, I made the mistake of putting the DVD in the slot with him sitting in front of the TV.
Low and behold I come back in the den and he has the the DVD out trying to put another one in the slot. So what the heck, I showed him how to do it, he had alread figured out which button to push so the cat was out of the bag anyway.

It was a great day with our two grandsons and could have only been better if Andrew was there as well.

On another note, I just discovered this week that I can see how many times this blog is veiwed. Over a 1000 veiws, thank each of you for your interest in Cole and in Fragile X. I hope that my little reports will remain interesting as I try to tell about Cole's progress and how he much he adds to our lives.

Fragile X is a genetic disorder that can become a part of your life. Like so many other things that affect our health and the health of our loved ones there is seldom a warning. It is here and we must deal with it. Some will have a bigger burden than others but each will find the need to make sacrifices to provide the support their child or grandchild will need. No matter what the malady may be, they all need support from those who have not been touched, yet. It is easy to gravitate toward support of deseases and disorders that affect children and especially those that are crippling or terminal.

Fragile X Syndrome is not necessarily crippling nor is it terminal in the normal terms. Fragile X can be seriously dibilitating and it is terminal in the fact that the child will become an adult and will have the disorder till death. The fact is this disorder will allow that the child will outlive his parents but still be in need of support, not only finacial but physical and emotional support. This is another plea to those touched, untouched or removed from Fragile X syndrome to consider supporting National Fragile X Foundation which offers support to families, FRAX which funds research into treatments and cures or Easter Seals which offers therapies and services. These are their websites.

Thanks Again.

Saturday, February 19, 2011

Hi! Been a few weeks since I have posted anything about Cole. We have finally began to live in our home again. Erin spent the night with us Thursday and Friday nights and Cole and Cale came over Saturday morning. They stayed until we took them home for Cole's birthday party.

His Nana and Papaw, Aunt Dana, Mema and Grandaddy Thomas were there as well as Brandi and Chris and their friends the Skinners.

The Skinners have two small children, Alyssa and Caleb. When they arrive Cole began to holler Caleb, Caleb. Caleb must be around 2. Alyssa 3 or 4. They all played well together on the swings. Cole fell out of the swing a couple of times, but jumped right up. Cale ran into the swing a couple of times.

Cole and Cale both seem to interact well with other children. They were both tired from playing hard all morning and no nap. I wondered how well they would do. They were pretty good. After the cake cutting and eating the kids began to play again.

Cole brought me two balloon that were tied together. He said "apart, Pappy, apart". It took me a second to realize what he was saying, then he separated them at the knot and handed them to me. Upon untying them I gave back to him. He immediately turned and gave one to Alyssa. Saying, " here lyssa, here". He really amazes me sometimes with his willingness to share things when he has more than one. With only one though he does become a little selfish.

After opening his presents, he showed his Nana, Papaw and me his new "Thomas DVDs" and the for Thomas books. Then he gave each of us a book. Sharing again.

He then sat for several minutes and identified all the trains in the books for Nana and me. Then he read for me, in jibberish, each page in the little books before pronouncing the end.

Cole's vocabulary continues to grow. He still does not readily name colors and has to be prompted to do any counting. But he recognizes more animals by name and sound. He uses more and more words in sentences.

I got tickled at him when he was showing me his DVDs and books. Their was one box with DVDs and 4 little books about 3x5. He did something just like I would do. He could not hold all of them at one time and show them to me. So he put the DVD box between his knees then attempted to hold up the 4 books. The DVDs fell to the ground from between his knees each of the 3 times he tried it. Then he picked up the DVD box and slammed on the coffee table and proceded to show me the books. Just seemed like something my impatience would have me do.

Backing up to the morning. When Cale and Cole arrived Cole's first request was for "COKE". Followed immediately by Cale saying "COKE". So I guess I have addicted both of them for life to Co-Cola for breakfast. I know that Brandi could shoot me.

Cole did get upset when I tried to get him to use his fork at breakfast. He told me "I don't want it". Then handed it to me. I put back on the table and he immediately handed back saying " I don't want it". Didn't force the issue. He was doing so well with everything else. He can display a little temper at times and I could see it coming.

Then I heard the backdoor open and then Cole gave out a holler, GamMa(not sure about the spelling). It was my Mom. Cole has not mastered Grandma yet, but Mama melts at the sound of Cole saying GamMa. Both he and Cale ran to her and gave her hugs and kisses. These are such loving children. Erin held back because she is so grown up at almost 7, but she finally gave hugs and kisses.

We went back outside and I got Cole to pedal the "big wheel" a little, but he still ends up pushing it along with his feet on the ground. I do think he was getting the idea of how it works though. Cale is so short he can't touch the pedals yet.

Then the sweetest momemt of the morning came. Marcia was sitting on the edge of the cedar chest, which is the only peice of furniture not to make it off the carport and into the house. It contains all the things that belong and remind us of our son Jay.
It is to heavy for us to move without unpacking. I don't think either Marcia or I want to go down that emotional road just yet. But to the moment.

As Marcia was sitting on the cedar chest Cole climbed on to it and then stood behind Marica and hugged her kneck from behind. The he said, "Granny, scatch your back". Marcia said " Please do". Cole sat with his legs stradle the chest and scratch Marcia's back for a minute or so. Then he said, "feel good, Granny" and hugged her again.

Moments like these might be taken for granted in a five year old if not for Cole's FX. The FX chromosone limits production of a protien which allows connections between sections of the brain to grow. Literally parts of his brain cannot communicate to other parts. So every little word or act of cognition and recognition are little triumphs.

Cole's FX is mild and he continues to learn. He is a great little problem solver. He does not let anything slow him down for sure. We are so greatful for that.

I am the member of Fragile X group on Facebook. Very seldom do I post anything there, but I read the posts of other Fragile X moms and dads and I assume a few grandparents like myself. Sometimes it makes me sad as I read of the struggles of some families, but then some one posts a minor or major moment of progress and hope springs eternal again. I appreciate the honesty that all those in that group have in putting out their failings, successes, tragedies and triumphs.

For anyone reading this I hope you will at least remember these families and children in your prayers and if you can please support FRAXA at as they search for treatments and cures for Fragile X Syndrome.

Thanks again.