Aww... So Cute!

FALL = FUN!

We have been having some good times down here in GBC. We went to our second FX function. A Fall Festival. Here we are with the best picture we could get: Cale's cousin's, Morgan and Shelby came down from Oklahoma. I don't think Cale likes pumpkins very much or maybe it's being forced to sit on them and take pictures. Here is the best of all the pictures we took:

I did a little comparison. Last year pretty much looks the same as this year. Chris said he looks like Benjamin Button in the Fall 09 picture. Oh, did we get a chuckle out of that one. And it's true:

Cale's second trip to the Fair. Last year I remember it was so hot and he had his helmet so it made it even hotter. He rode his first ride:

Petting Zoo at the Fair. He wasn't too keen on the bigger animals:

New Jammies:

Cale LOVES the "Elmo Song". So when he hears the tune.......he cracks up!

This is Cale's version of a flip:

17 Months!

Yikes, it has been a while since I posted. We have been super busy with all of Cale's therapy. He is now in speech twice a week. They are trying to teach him to communicate using words, sign and pictures. For example....if he wants a drink, I have him go to his picture board, pull off the picture of the drink and hand it to me while I say and sign "drink". It is called total communication. We start off doing that to see whether he prefers sign or pictures all the while always saying the word and trying to get him to say it. Also, a lot of face massaging since he has low muscle tone in his jaw and lips. Pretty much I wish I would have majored in speech therapy or special ed instead of dumb computers. But, who knew? Anyway, the Zoloft is awesome. I would like to up the dose so I will probably be asking the doctor about that. He is just not as clingy and is sooo much better in new situations. What a difference.

He has had lots of "boo boos" since starting to walk. He also got attacked by mosquitoes so his forehead looked like the elephant man for a couple of days.

He is loving Little Gym and starting to leave me and go explore. He actually climbed up a few stairs (with my urging). He loves the balls and bubbles. He is picking stuff up without actually going down on his hands. He is starting to point with one finger, but not at stuff that he can't touch. He can point to his toes, tummy, head, ears and your nose. Occasionally he will stick his tongue out if you ask him. He understands so much more than he can communicate. He actually lifted his hand up toward the fan the other night. Like he wanted us to look at the fan, but he didn't quite know how his arms and hands worked? But, he is starting to discover his hands, opening and closing them. His flapping is getting less except when he is really excited, like when he sees the dogs.

Basically, everything is going smoothly right now. I am just really focusing on his communication which, I think, will be the thing that gives him and us the most trouble.

And lastly, we are back on the IVF train. Our retrieval of the eggs is this weekend and then 5 days after that they will hopefully be able to transfer 2 embryos. I will then take a pregnancy test 2 weeks after that probably around October 24th ish. I am so nervous! Wish us luck and please pray for a pregnancy!!

A couple of weekends ago we attended our first Fragile X function. Texas has a Fragile X organization based in Irving. So it was nice to get to meet other parents dealing with the same things. Cale's friend Kolton and his family came all the way from San Antonio! It was really nice talking to Kolton's mom, Deanna, and getting some great advice and pretty much just venting to someone who knows exactly what you are going through. I wish they lived closer!

Another football game. I thought it was cute that Beau and Cale were watching the players warm up. I guess they will be out there in about 15 years?
Our family from Michigan came in town and Cale loved hanging out with his cousin Annie!He loves to pick up sticks.
Nene's 80th birthday party. Pretty much Cale pulls all my shirts down and stretches them out. Even the one time a year I try to wear something nice.
Cale hanging with Grandma.
And......he is ready to go.
He LOVES the vacuum. I can't even vacuum at all if he is in the room because he wants to lay on top of it. I can't figure out if he likes the noise or the vibration.
I got this lawn mower for Cale way before he started walking thinking it would help him because he could push it. Well, I didn't realize that the handle was floppy and didn't support him so he never used it. Yesterday I was in the living room and he just walked right in the playroom and got his mower and started mowing around the house! Yes! Excuse the bad lighting and the horrible mess of a living room. I call that the Calenado. Like tornado, but caused by Cale. No? Ok, bad. Here's the footage.

Back from Cali!

The trip was awesome! We learned so much. I am so excited. Cale did great. They did an IQ test, developmental test and blood draw. I was so glad to have Aunt Misty and Nanny come with me to help with Cale. Thanks so much!! They took him to the zoo and park and everywhere else while I was in doing my testing stuff. They did some tests on me because they are doing a lot of research on "carriers" of Fragile X. Anyway, back to Cale.

Right now his IQ is 69, which is in the "mild retardation" range. I am not too phased by this because I know it can improve. Also, he scored lower because his speech and language are really delayed right now. He starts speech therapy twice a week this week! His fine and gross motor skills along with his visual perception were at the 14 month level, which was good, and then his expressive and receptive language were at the 9 and 10 month level, which was not good. But, again, he will be starting speech, so I expect that to come up in the next few months once he learns how to communicate better. He did test negative for Autism, but they said that could still develop before he turns 3. Right now, because he has high anxiety, the doctor put him on Zoloft. Just a teeny, tiny bit each day. This is going to ease his anxiety, boost his language and hopefully prevent Autism from developing because if his anxiety is eased he will be more social! I can't wait to see the results.

The blood draw is going to test his methylation status which is basically how much FMR1 protein his gene is producing. The high percentage being produced the higher functioning he will be. But, I am not even going to concern myself with the number because I finally accepted that Cale has Fragile X and that is a part of who he is. It doesn't define him, it is just something he has. Like a large mole. Ok, not like that, but you know what I mean. This past week I realized that I love him the way he is and I wouldn't change him one bit, Fragile X and all. Fragile X kids have a lot of common characteristics. They are really sweet, people pleasers, honest, easy to forgive, and have a great sense of humor. So........if I had to choose, would I rather have a really smart kid that has a high IQ or a kid with all of those great qualities?? Exactly.

They also talked about a new drug that has been tested on mice with Fragile X. The drug has actually repaired the synopsis in the brain that have been damaged or not working from Fragile X. They are starting the human trials for it and when Cale is 3 1/2 he will be old enough to engage in that study! It is so exciting to be involved in this research that will one day hold a cure for Fragile X. I mean, it tears me up just thinking about it and all the great kids out there that will benefit!

And..........................................it's official. He is a walker. I am calling it at 16 months. He did not crawl one time this weekend!!

Monday morning when Cale woke up he threw up about 6 times! I guess he got the stomach bug that had been going around. So this was him in the car on the way to the airport. Good thing I did this because he threw up again in the car, but after that he was fine. He did really well on the flight.

Aunt Misty and Cale at the Sacramento Zoo:

Just looking cute in his converse:

This is where all the "magic" happened:

We went down to Old Sacramento on Thursday night and walked around looking at the trains:
G-Paw and Cale taking a stroll after church:

Scout and Brooke came to play with Cale today. Brooke and Cale already know how to share:

16 Months!

I just can't believe my little Cale Bale is 16 months old. He is really getting to where he is curious about everything and wants to move, move, move! He finally opens up and pulls stuff out of the kitchen cabinets, he is starting to play with his toys like putting stuff in and out of containers, pushing buttons (with one finger!!), and getting his blocks out. Walking is not here yet, but he is so close. He wants to walk and tries all the time. He is still falling....a lot! Right now, the little pooper is sick. He has croup, two ear infections and conjunctivitis in his eyes. Hopefully he will be good to go on Monday because we are leaving for the MIND Institute in Sacramento. I am so excited to have him seen by people who specialize in Fragile X. I have a TON of questions!

This month our goal is to make walking his number one mode of transportation. I think he can achieve that one! We are also working on clapping, picking things up with his pincer grasp, pointing with one finger (he still uses four) and stacking blocks. Also, tomorrow will be his first football game. I am a little nervous because I don't know how he will react to the loud noises of the crowd and band. And it doesn't help that the game starts at 7:30. But, I am going to remain positive and hope for the best.

Letter From Dada.....

Chris gave me permission to post this letter he wrote. To no one in particular, just getting his thoughts out on paper:

My name is Chris and this is where I stand mentally a few months after finding out my son was diagnosed with Fragile X Syndrome. When I first heard of Fragile X, I was scared to death. I could not get over the fact that the words "mentally retarded" were tagged to the syndrome. The more study I did the more I began to realize this is not the case in all children with Fragile X. I am very sad to say that this is the point when I became much closer to God because I began asking him for assistance in making sure Cale was not touched by this in a severe way. I ask forgiveness each day for the fact that it took this event to get me talking to God like I should on a daily basis. Anyway, day after day I could not get out of my mind that Cale may never play sports, he may never have a girlfriend, hang out with other kids, go to college. In a general way, he may never have the same experiences I had. Those thoughts made me cry a lot when I would be driving by myself. I have since transformed my way of thinking. When I began looking at my experiences, I ask myself what impact did I really have on this world? What have I done that has helped people and made a difference? I regret to say that I could not think of any answer other than a standard generic answer. I begin to realize that Cale has a chance to make much more of an impact on this world than I ever could. Christy and I, well right now, Christy, is giving him the best chance possible to be a normal kid. Even with that, he may not accomplish those goals I had in mind for him, but he could do much more. As a coach, I don't have a quit attitude. I will not quit on Cale. I assure you that he will defy the odds associated with this syndrome. Christy and I have searched thousands of sites, papers, etc. looking for success stories. They are hard to come by. My goal now for Cale is for him to grown up and be a success story. 15-20 years from now when parents of Fragile X children are desperate and confused looking for answers, Cale will be the answer they can turn to. The odds can be defied! A child can overcome the symptoms and can do great things. When Cale accomplishes this, I would say that he will have had a greater impact on this world than I could have ever imagined. If you really think about the impact Cale could have on other people and what he can offer this world, well, I would say he has by far exceeded those goals I had for him the first day I laid eyes on him.

Welcome to Holland

This is a poem that is around the Fragile X community. I like it. It hits the nail on the head.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…… When you’re going to have a baby, it’s like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.” “Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss. But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

I am still trying to accept "Holland". Not completely there yet, but I'm getting close. And I still cry when I read the poem. Especially at the end.

I don't want to toot his horn, but that is what this blog is for, so I will. Cale stood up....on his own.....in the middle of the floor. 3 times! It started out him squatting and playing with his Mozart Cube (this is the toy we have to take to daycare and church because it calms him), anyway it is about 6 inches tall. While he is playing with it I tell him to stand up and it is so funny watching him want to stand, but not quite knowing how. But, he kept trying and was straight legged, but hands on cube. Then he kind of swayed back and forth and let his hands go and stood up! So, we did that about 4 times. Then, I took him to the middle of the living room with nothing and told him to stand up and he had one knee on the floor and one knee up and was trying to hoist himself up by swinging his arms. It was pretty funny. He finally realized he had to get in the squat position and then all fours. And he balanced and stood up then walked about 5 steps. I was pumped!!! I will have to get it on video this weekend.