Fragile X-Traordinary

can't keep up

2011-02-10T16:42:00.000-08:00

I'm a lousy blogger. I'm not even going to try to catch up. I'll just start today. Unfortunately, that's what I always say. But, there's no day like today to start being a good blogger.

I've been dealing with horrible tantrums on Pup's part. He's started hitting himself in the head. We've started receiving parent education for behavior once a week and some of the techniques we're learning have been helping a little, but I can tell this will be a long road.

AJ is doing well in kindergarten. It's amazing how much he's learning. He's really starting to read and seems to be a whiz at math. Nothing is hard for him at this point. It may take some practice, but once he gets it he gets it! I got to go on his first field trip a couple of weeks ago to see the Chinese Acrobat show. He loved it, and it was so much fun seeing him with his friends. It was his first school bus ride. He made it clear that he wanted to sit with his friends and not me!

On another good note, Pup had his first speech therapy session without any need for bouncing or swinging. He was attentive the whole hour!

The Law of Attraction is not a law

2011-01-04T21:36:00.000-08:00

When encouraging AJ, now 5 years old to use the power of positive thinking to attract a good parking spot he said, "MOM, just because you imagine something doesn't mean it'll come true." Me: Yes it will, if you believe hard enough. Him: No it won't. If I imagine I'm climbing Mt. Everest doesn't mean it'll come true. ME: If you believe it, then maybe one day with the right tools you can do it! HIM: There's snowstorms and blizzards up there, Mom. It's the highest Mt. in the world! ME: So, people can still climb it. HIM: Mom, I'm never climbing Mt. Everest OR jumping from an airplane with or without an army parachute. I'll only jump off the couch!

Party Time!

2010-12-19T07:38:00.000-08:00

We had our annual Christmas party last night. Not as many people as usual as many family members were sick, but this was a blessing in disguise as there was more seating for people! It was still fun. Poor nephew Hank the Tank was sick, as was my sister and step-father. We had our usual white elephant gift exchange, and AJ even played piano- for tips.

ABA

2010-11-29T21:00:00.000-08:00

Started ABA today for Pup AND a second hour of speech therapy until he's 3. The behaviorist just observed his behavior for the hour. I'm hoping she will be an asset to our family.

Funny Things

2010-11-28T00:06:00.000-08:00

Today-
AJ- "tantrum, tantrum, whine...."
Me: " Stop whining."
AJ: "It's your fault."
Me: "Don't blame me for your whining."
AJ: "My parents always make me mad."

Later tonight-
AJ was doing his homework. I asked him to correct something.
His reply, "I can control my own life."

Yowza!

2010-11-27T23:59:00.000-08:00

My sister brought it to my attention that it has been a year since I blogged. I can't at this time catch up on the entire past year....at least not today, but I promise myself that I'm going to start again. Too much has happened in the past year for me to write everything, but at some point I will probably highlight some good stuff. I can only do what I can do, right?

Work has kept me very busy as well as my kids. Pup is doing well and will start ABA next week. AJ is in kindergarten now and is doing well. So, to get myself started I told my husband I would at least write something to get myself going....here it is. I was dreading having to start again as I felt so much time has past, but I really don't need to record every detail of the past year and can just start from today.

BUT, now that I'm sitting and typing, I feel compelled to write some stuff down. Pup is finally starting to try to communicate. I say try because I feel that I as his mother am probably the only one who'd understand him. I worry about when he starts preschool in a few months. How will they know what he wants? He will start a second hour of speech this next week. Thank goodness for Regional Center.

Ok, this has wiped me out. More tomorrow. Promise.

Long Update-Post Thanksgiving

2009-12-02T18:01:00.000-08:00

Thanksgiving at Grandma and Grandpa's

I realize I haven't posted in a long while. We've been quite busy this past month. One thing I'm grateful to my husband for is his sense of family and adventure. He loves to do things as a family so we often go to many places- even just to drive and walk around. Sometimes I think that if it wasn't for him we wouldn't go anywhere. Here's a pic from the Griffith Park Carousel, train, and pony rides. Pup had his first pony ride ever (which he loved) and AJ rode his first horse in the non-traditional pony ride sense.

Here are Daddy and AJ on the train, but unfortunately you can't see the train part.

That same weekend we went to the Town Center for "Toys for Big Boys." This 3 day event was part of the California Lifestyles Expo where tractors, RVs, Limos, Race Cars, Funny Cars, tires, and home improvement projects were displayed for all to see. We specifically went to this event to support my step-dad Randy who was representing his company that makes torque converters.

Here are some pictures of AJ and his Grandpa from that day. They are standing in front of a race car that is sponsored by Randy's workplace and is still racing today. Randy was once a member of its crew and responsible for many of its parts. AJ was so excited that he actually got to sit in a car- something many people will never get to do.

The next event of the month was the annual Christmas tree lighting we also attend at the Town Center. This year we went with Danny's mom, sister, and the Worfords. Pup was very engaged by the lights and the music as well as the man on stilts.

AJ loves the juggler.

This month we also went out to dinner for Granny Mimi's and Uncle Ryan's birthday. The whole fam went to a Mexican restaurant for dinner.

The 3 amigos at dinner. (Pup, Baby Worf, and Hank the Tank)

Last but not least we had Thanksgiving. We enjoyed two nice dinners- one at my grandmother's and one at Danny's mom's house. Unfortunately our Thanksgiving was accompanied by ear infection and pink eye. Poor Pup. He was not well. I had taken him to urgent care on Tues. and he was put on antibiotics for the ear infections. On Friday I took him back because his eyes did not look right. Sure enough he had pink eye too. Not fun. Fortunately, everyone else seemed to escape it except for Hank the Tank. Guess we should have stayed home. Anyhow, it was nice visiting with family- on both sides. Danny's tia Irma is in treatment for cancer so it was good to see her doing well. On my side it was great to see my aunt and sister who we don't see much due to distance.

I am looking forward to Christmas and the rest of the family festivities. Danny sat down last night and filled the calendar with all the holiday things that we need to do before Christmas. This includes driving down Candy Cane Lane, watching various Christmas movies, and taking pics with Santa. His goal is to fill our house with everything Christmas. There are a lot of decorations up and at first it was annoying, but I'm starting to embrace it. It is fun for the kids afterall- and that's who it's about anyway.

In AJ news, 2 of Pup's therapists this past week told me how smart they thought AJ was and how good his vocabulary is for only a 4 year old. I was quite pleased, and although I'm really not one to brag, I feel like it's because of all the books we've read to him and the experiences we try to give him. Anyway, it made me feel good. That's all.

2009-11-25T23:03:00.001-08:00

2009-11-15T08:15:00.001-08:00

Last night was a fantastic night. We went to a Mexican restaurant to celebrate two family birthdays. Pup, Hank the Tank, and Baby Worf all sat near each other in their highchairs. Pup was soooo well behaved. He ate everything put in front of him, played, laughed, walked around the table....More importantly, I didn't feel last night that he was any different. The Tank had food all over the floor....Baby Worf had to be taken out of the restaurant because he had hit his breaking point during the meal. . . Not Pup, though. He was so great- no tantrums, no crying....nothing but smiles and eating. I felt, just for a while, that he was just a normal kid, and the dinner last night made me realize that in many ways he is a very normal kid.

After dinner we had to go to Danny's favorite hot spot- Target. He loves all the Christmas stuff so we had to spend money we don't really have to further decorate our home. It is Danny's goal to fill our home every holiday season with any piece of Christmas decor he can find. Although I love his spirit, he doesn't see the price tags on anything. We usually end in some argument, but since I was so happy about Pup I let it go. And in the store, Pup was even better! He played with toys appropriately in the cart, flipped through pages of a book (never before seen!), and at one point we could tell he wanted to get out so we let him walk around and he proceeded to help me push the cart. Again, I just felt like he was like everyone else.

To top that, for 3 nights in a row he has slept all the way through the night without waking up once!!!! I hope that is a trend that continues. And for two of those nights, I put him in his crib awake, and he fell asleep without crying for me. Yeah Pup!

Last Sundy, we went to "Toys for Big Boys" at the Town Center. This 3 day event was part of the California Lifestyles Expo where tractors, RVs, Limos, Race Cars, Funny Cars, tires, and home improvement projects were displayed for all to see. We specifically went to this event to support my step-dad Randy who was representing his company that makes torque converters. On display was a race car he helped to build. I wish I knew more about cars so I could appreciate this more. AJ got to sit in the actual car which, I imagine, is not an experience many people get to have.

News!

2009-11-02T23:58:00.000-08:00

I'm so thrilled. Pup starts and early intervention group class on Thurs. Since I'm working Danny will be going with him. It's 2 hours once a week. I LOVE my service coordinator. With all the budget problems here in CA I'm VERY concerned as our insurance is now going to be accessed. I'm not sure what that mean, however. All I know is that I'll be paying out of pocket for things I didn't have to before. Pups IFSP meeting is on Wed. I'm really concerned about his fine motor development at this point. Still working on waving, clapping....yada yada yada

The Drs. Mc Dreamy and Mc Steamy are in.

2009-11-01T12:27:00.001-08:00

Last night was Halloween and in traditional fashion we took the kids trick-or-treating. AJ and Pup were Drs. Mc Dreamy and Mc Steamy. It was fun this year because Uncle Bret and Auntie Kiki (my sister Karyn) came with us unlike last year. Before venturing off to the houses, we stopped by my mom's to show her the kids' costumes. Hank the Tank was also there with my sister and brother-in-law in his pirate costume donned with mustache and pirate goatee.

Then it was off to Pop Pops where we were joined by Grandma Bebon and Aunt Kelly for trick or treating. They painted their faces and The Tank was not too happy. Of course Pup was oblivious and wasn't scared a bit.

Funeral

2009-10-31T15:49:00.000-07:00

We had to drive down to San Diego for the funeral of Danny's step-father of about 20 years (well, former step dad). It was a small, very beautiful service in a Jewish cemetary. Myron was Jewish and as we're not the boys were given yamakas to wear. It was a graveside service so everything you'd expect to happen did. We saw the coffin being lowered and we participated in shoveling dirt into the grave. It was solemn but happy at the same time. We let it all happen and felt that if AJ had any questions we'd just answer them. After all, death is a part of life. We didn't really say much figuring he'd ask and we'd tell him. On the way home we asked him if he had any questions about anything he saw. We figured he'd ask about the "box" or the shoveling. He said no but understood that Zaide went to live with great-grandma in Heaven. Earlier this year he went to the funeral of Danny's grandmother. About 10 minutes later he announced, "I do have a question." I braced myself for something big.

"Why did I have to wear that little hat?"

Fall Family Picnic

2009-10-26T19:27:00.000-07:00

AJ's preschool had their annual Fall Family Picnic tonight. Grandma Yvonne, Aunt Kelly, and Granny Mimi were all in attendance. It's nice to be able to see AJ's friends and see him "in his element." We just got Subway sandwiches and played on the playground. They also had activities set up on the patio like pumpkin painting, pumpkin hammering, and other things.

Aunt Kelly and AJ in the sandbox on the school playground.

Pup and AJ in the playhouse.

It's very therapeutic to hammer golf tees into pumpkins. You wouldn't think so, but it was!

Granny Mimi and AJ

Pup did some walking while we were there too! He just needs to learn to get up by himself.

Let's Go Yankees!

2009-10-25T21:11:00.001-07:00

Here are the boys celebrating the big win! The Yankees are off the World Series- their first since 2003! Go Jorge #20!

Today was also Pop Pop's 60th b-day celebration. Al, as always, enjoyed helping to blow out the candles on the cake and being the boss of all play. It was so nice to see all the kids finally playing together as they are old enough. It is now noticeable, though, that Pup is not quite there with the other kids- even Danny (who NEVER ever says anything) said something today about it. It's a bit painful to hear my sister and friend Tracy talk about the boys (who are all born 3 months apart- Worf [20 months], then Pup [17 months], then Bubs [14 months]) growing up driving, playing ball together, because I know there's a big possibility Pup won't be able to. I don't want to, however, spend his life wishing he were like the other kids. I just want to accept him for who he is, but it's hard. AJ is like the other kids so I guess I have the best of both worlds, right?

Here's Pop Pop opening some gifts.

I am watching him right now and he's FINALLY able to push the ball popper toy on. He gets that if he pushes on the lever the music will start. It's the first toy he's "gotten." Yeah Pup!

Walking, Sleeping, Pumpkins and Other Fun

2009-10-24T22:43:00.000-07:00

Ok, I know I haven't posted the video of him walking yet, so I'll do that now as promised.....Weeks later he is FINALLY (as of today!) starting to walk across the room ON HIS OWN! So first steps at 16 months.....he just turned 17 months, but I'm calling it at 16 months. Woo Hoo! I have a walker.

So this video is of his VERY first steps and was taken about 3 weeks ago during his EI session. I've also bitten the bullet and am on day 3 of putting Pup in his crib (awake) to go to sleep. The first night was bad. Lot's of crying. I would go in there to hug him or rub his back but never picked him up. The second night was a little better. Still crying, but there definitely wasn't as much. Tonight he cried very briefly and fell asleep. Now- if only he stayed asleep all night! I for sure thought he wasn't going to bed because of a sensory problem or fragile x or something like that. I realize, however, it's simply because I wasn't making him go in his own room. I sometimes forget that he really is JUST a baby, too, but it's getting easier. Now that he's walking more, and I see him bouncing in the bounce house at the pumpkin patch I realize he is just a happy kid.

We've had a busy past two months. Lots of trips to the local pumpkin patch and a trip to the Apple Festival in Oak Glenn. We also took Pup for his very first haircut today. He slept right through it. Here are some pics.

Pumpkin Patch

We've made quite a few trips to our local pumpkin patch this month. Here are some pics of the trip with my sisters, nephew, brother, and mom. We've also gone with Danny's mom and sister as well as our good friends the Worfords.

The cutest in the patch! Pup, Bubs, and AJ!
Uncle Gennaro and AJ- I was completely shocked he wanted to go on this ride. He went by himself twice and then once with my brother. I remember when he was afraid to go on anything. He wouldn't even go in the bounce house by himself. He's so grown up now.

At the Apple Festival at Oak Glen. We went with Grandma Bebon and Aunt Kelly, but I realize I didn't get any pics with them!

Our local pumpkin patch has a bounce house/maze thing that Pup LOVES. He loves to bounce and go down the slide. He shows no fear at all. Here's Danny with Pup in said house. The pic below is of Pup and Baby Worf.
I remember when AJ was little, he would NEVER get into one of these by himself. Pup is so different, and as my brother said.....at least we know he's advanced in the "having fun" department.

In other fall events......

AJ, Danny, and Pop went to the Dodger game.
I love this pic of Danny and AJ.

We went to our town's carnival. AJ wanted to go on every ride.
We found this great children's museum in Irvine called Pretend City. It's literally a pretend city, and there are many areas for dramatic play. There's a grocery store, a bank, a fire station, a fake beach, and even fake ATM machines that spit out play money.

Here's AJ in Pretend City pretending to be the cashier at a grocery store (It's actually a miniature Ralphs), and being a construction worker
.

Here, he is acting as waiter in a pretend Thai restaurant. Very exotic for a children's museum.

AJ has been taking piano lesson since January and is getting really good. Pup LOVES to be at the piano with him.

My good friend Tracy took this picture when we went to the mall. I think Pup looks so sweet in it. He showed no hesitation in wanting to crawl through the tunnel.

And in big news...we got Pup his first pair of shoes.

BIG NEWS

2009-10-03T11:20:00.000-07:00

I will post a video later once I get it uploaded, but yesterday was a HUGE day! Pup took his first REAL steps! I actually got it on video!!! It was during his early intervention session. Pup is balancing pretty well on his own if he's "placed into position" and using my car keys as motivation, his EI dangled them in front of her slowing scooting back. He took one step, then another. I think there were about 5 or 6 total before falling! So....I'm calling it at 16 months. I have or will soon have a walker!!!

In AJ news: He had his first picture day at school on Thursday. I was so excited and hope they turn out well. I really want a class picture. I'm also trying to get him to try t-ball or soccer, but at the moment he's not showing any interest. He does want to do gymnastics, however, so I will put him in that. I told him he's not allowed to say no until he tries it. He then decided he would try other sports. He definitely is stubborn.

For those of you who don't know...AJ has "worked" at many places and has a boss named "Tim" who seems to follow him to all of his pretend jobs. He has been a dentist, a waiter at Don Cuco's, a plumber, and his longest job was working at Macy's. If you ask him what he does he says, "I make money so we can eat." He has currently switched jobs. This week he has become a firefighter.

Some progress for Pup....

2009-09-25T19:13:00.001-07:00

-Almost walking....
-Can lift the lid of his toy box
-Can drink from a straw
-Is starting to have more purposeful play
-Understands what I'm saying when I ask him where his bottle is!

What to do...

2009-09-08T22:24:00.000-07:00

Ok...so I'm trying to get Pup to fall asleep on his own- in his own crib. He's screaming. Now, if this were AJ I wouldn't be so worried, but Pup "cognitively" is not there yet. Do I let him cry it out? Any advice out there, moms????

Also....I'm back to work now, but I will try to keep up the blogging. My goal is once a week.

This Week's Happenings

2009-08-18T21:25:00.000-07:00

I am LOVING the Hanen class I'm taking. This week the focus was on keeping routines for playing, going to bed, etc. very consistent so the kids can participate. Also important was the language used when performing these activities. Because Pup is often watched by grandparents and is home with Daddy during the day, I want the language they use with him to be consistent. Since Danny isn't able to come to the class with me and is at work for a lot of the therapies, I started making a book to illustrate how to play with his toys. I figure I can take this book with me to whomever is watching them so their play can be meaningful to him. Is this too anal?
Here is a sample of what a page might look like. There is a pic of the toy, it's purpose, vocabulary to use when playing it, and the routine for playing it. Must be the teacher in me.

Wow...so much to say. We've been busy. Nephew Hank the Tank celebrated his year birthday. I can't believe my sister's son is already a year. I remember how excited I was when I learned we were pregnant at the same time- that our two babies would grow up together. Henry is the cutest baby (besides mine of course) and is so smart. Here's a shot of him with Pup in his birthday regalia.

This pic was taken at my mom's house where in her traditional fashion we had a pre birthday birthday party- complete with picnic lunch, kiddie pool, bubbles, and ice cream. The next day was a swim party at Pop Pop and Mimi's house.
Juliana wanted Hank to have a "doctor's office toy" so we got her one. She commonly sees these toys in doctor's offices (I see them in banks) so that's what we call them.

Here's Jules with a painting AJ made for Henry. He wrote Henry's name at the top with prompting by me of course, but I am quite pleased with how many letters he can write. He called this "Patio With Tree."

The next day we ventured into Westlake for a family drive and impromptu picnic at The Landing. I believe my next big purchase will be a pontoon boat! haha

On Monday AJ had a playdate with his preschool girlfriend Ysa. She is adorable, and I just love her mother who happens to be a doctor who sees a lot of kids with developmental issues. It's amazing to know someone like that especially with fragile x in your life. I kept Pup in his stroller at first, but then realized that he will only be as independent as I let him. He does love the swing so we did that first. I let him play in the sand (which he tried to eat), and he crawled through the tunnel on the playground. Ysa's sister is 16 months and the gap is astounding to me, but my little guy had fun in his own way, and I need to just realize that he is who he is, and I need to just let him be. I think it'll be a little easier when he is walking. God, I hope that day comes quick! He laughed and giggled at the girls climbing all over the gym equipment. I'm so glad I took him out of the stroller. I think I do it to protect him as I don't want others wondering what's "wrong." I know at some point people will stare or ask. And although I know that's not a big deal, I just never thought I'd ever have to do that.

And the BEST day lately has been AJ's first day back at preschool. He's one of the "big boys" now as it his 2nd and final year before kindergarten. I'm so proud. Although at the end of the day, when all the other kids were in circle time singing songs, I witnessed him being told to stop fooling around! Danny was horrified that he wasn't paying attention! And although I don't want him being "that kid," I was happy he was being social as last year he was soooo shy.

First day last year

First day this year

Playing Catch Up!

2009-08-09T23:24:00.001-07:00

For the longest time I couldn't find the other camera we had that had pictures on it from various summer activities. Well, I found it. Of course it was in the closet- where I keep it. Funny how that works. Anyway, in organizing the photos on my computer I realize a lot has taken place this summer- Pup's first swim, his first birthday, AJ's 4th birthday. . .Since I've been off from work this summer I've been blogging quite a bit and didn't write anything down from March until a few weeks ago. I'll try to fill in here- and this is for my own benefit of course as I'm trying to use this blog as a way to document our activities. I'm thinking I want to eventually print out the pages and place them in a book so it serves as a very detailed photo album.

Play date with cousin Henry (11 months)

For Pup's first birthday, we just had some people over to the house. He got lots of toys and had his first bite of cake ever. Of course the experience wouldn't be the same without Cheerios.

And here at the party were Pup's cousin to the left and friend Baby Worf to the right. This picture makes me happy and sad at the same time as one day it won't be so easy for Pup to play with them. But I digress from the joy- excuse me.

AJ had his fourth birthday party at the local park- complete with pinata and bouncer. It was his first party with real friends from school.
Shortly after, to celebrate Daddy's birthday we took advantage of the free admission on your birthday deal at Disneyland.
Fourth of July was spent at Pop Pop and Mimi's (the in-laws) where Henry and Pup had their first swim together! It was the first time in the pool for both of them.

Shortly after, Danny's brother Michael and niece Darcy came for a visit. We went to the local farm for some agritainment. The kids rode ponies, fed animals, and later we picked fresh raspberries, zucchini, cucumbers, lettuce, eggplant, and tomatoes. Dinner was from the farm that night.

And this pic is just too cute not to post- Mommy's little helper:

Party On!

2009-08-09T01:47:00.000-07:00

Tonight was Ryan and Carly's housewarming party. Lots of food and drink. Cute apartment. Wood floors. Nice carpet. AJ and his cousin danced the night away to the music in their heads.

Happy B-Day, Grandpa!

2009-08-07T20:02:00.000-07:00

Today is my grandfather's 82nd birthday! We went to their house and swam. Forgot the camera. Came home, made dinner, went to the park to practice on the bike. AJ's becoming more adventurous.

Sing us a song, you're the piano man......

2009-08-06T21:48:00.001-07:00

AJ has been taking piano lessons since January and although I sometimes have to push him, he is learning a lot. Danny and I always talked about getting our kids music lessons and Mr. Brisley his teacher (school custodian by day.....musician by night!) is so patient with him despite his sometimes tantrum behaviors. Here he is in a jam session with his teacher. You can see Mr. Brisley on the drums telling AJ which notes to play. The objective was to keep in rhythm.

In Pup news....
He is mastering the sippy cup! Goodbye bottle! (Maybe)

Reflections

2009-08-05T22:44:00.001-07:00

I read the most wonderful thing tonight in Sarah's fragile x blog. I will cut and paste it here and should probably ask her first, but I'll take my chances. Sarah is the mother of almost 3 and adorable Quinn, and is the author of the blog "Love and Survival with Fragile X."

"Quinn's diagnosis has opened up unexpected opportunities. To love, unconditionally, an adorable, happy little person. To see the delight on his face when he uses his hard-earned pointing abilities to ask for things and to show us doggies and trucks. To appreciate the miracle of human development. To meet (in real life and online) strong, smart, funny, wise, patient, inspiring people. To revisit high school genetics and biology lessons. To learn a new vocabulary. To reflect on our values. To experience deep gratitude for the people who have supported us. To join the movement for increased access to resources and opportunities for people with fragile x and other disabilities. To feel strong as a family, as a couple, and as individuals. We are probably not done grieving, but it's good to remember that we're still here, laughing, crying, loving, and being."

I just love this and cried when I read it tonight. It is very true that as terrible as it is to learn your child will not develop normally, there has been great joy in watching him grow and develop- no matter how slow it's been. I giggled at the part when she wrote that it is thrilling to watch her son's hard earned pointing abilities. It is skills like these that most parents have no idea are such big deals....but to us, they are everything. I'm yearning for the day when Pup can clap and bang two toys together. Every milestone Pup has met has been cause for great celebration in my home. I've enjoyed Pup's infancy much more than with AJ simply because I just took for granted that he would do everything on time and simply expected it. So when it happened I of course was happy, but I didn't feel like it was so exhilerating. Waiting for Pup's next big milestone has been exhausting but exciting at the same time. I, too, have deep gratitude for the people who devote their lives to helping kids like Pup and feel like my life has real purpose- to raise two beautiful boys and help them to reach their full potentials. I thank Sarah for writing the above as it reminded me that "life in Holland" is really beautiful. I am finally starting to notice the tulips.

With that, here are some pics I've taken in the past day or two.
I found the boys like this on the couch last night. They truly do love each other. Pup likes to chase AJ around the living room. He can't stop giggling as he crawls around after his big brother.

Here's Pup with his Ear Band-It on. It's to protect the tubes in his ears from getting wet when he's bathing or in the pool. The boys have started taking baths together.
The boys spent the day at my mom's today. When they go over to her house they usually play in the front yard with the kiddie pool or have a picnic on the front lawn. When I came to pick them up today, this is how I found Pup- taking a nap in the pool.
It's a little hard to see AJ here, but there he is with his swimming teacher, Katie, who he has had for the past 3 summers. This year she even emailed us to tell us she'd be back. Al has taken swimming lessons every day this summer for the whole summer. He is really growing confident in the water- despite the sometimes ridiculous whining. I don't fear him falling into a pool as he's been trained in water survival.

Sink Update

2009-08-04T13:33:00.000-07:00

I will be washing dishes in the bathtub today. Danny seems to think that just because you want to replace the broken faucet that a whole new sink needs to go in. God forbid they don't match.

New Car Smell

2009-08-03T23:28:00.000-07:00

It's amazing how differently you can communicate with your children when you have the appropriate strategies and tools. So quickly do I want to dictate play, take a passive role, or try to speak for my kids. At tonight's Hanen class (which I'm loving) we evaluated how to play with our kids to maximize their communication. The SLPs running the class are so great and are teaching me quite a bit. It's sometimes hard to sit and wait for your kid to initiate communication, but when you learn how to get it from them it is so rewarding. I'm almost positive he tried to say "milk." There was mmmmm coming from him as I approached him with the bottle. I knew not to give it to him right away to promote him asking for it. It worked. He really reached for it, saying "muh muh." In learning how to play appropriately with Pup, I am seeing just how much he knows- something I think I was missing before. He really is communicating better than I thought. It's also taught me how to find opportunities to give him new vocabulary. It's also taught me to let AJ lead more when I play him. Often times I want to be director. I realize there is no right way to play Candyland now.

This weekend was very busy. We got a new car. Thank goodness as Husband's truck was on it's last legs. I have yet to take a pic of it but I'll try to remember tomorrow. It's a Nissan Versa. A little smaller than I'm use to driving, but the smell...........Love the smell of new car! We were literally at the dealer for hours with a short break as AJ had a birthday party to attend. It was a sprinkler, swim in the bouncy house kind of a party.

Of course the pinata broke right before it was his turn, but he wasn't too disappointed. What I don't understand is how parents could fill the pinata with jawbreakers when all the guests are 3 and 4. Needless to say, I had to hide the bag of candy. He's not quite ready for those yet.

We got a good interest rate as we financed it through our credit union instead of the dealer. Our insurance didn't go up much more, either. But not having a car payment in about 5 years it'll be a bit harder financially. I need to put Husband on a budget. He's the shopper in this family.

Today I took the kids to my mother's house so AJ could plant pumpkin seeds. He did the same last year so I believe it's now technically a tradition! My mother has a little plot of garden space on the side of her house. She's worked the once hard, non growing soil into something that can grow all kinds of vegetables. She has corn, huge zucchini....It's really impressive. She also has veggies growing out of plastic tubs all over her yard as it's mostly cement. In October she has a full fledged pumpkin patch and we will go over there, pick one, and paint them. Last year she bought some pumpkins from the market just to make it look more plentiful.

New Video to Watch

2009-07-31T23:39:00.000-07:00

One of my favorite fragile x blogs is called "Love and Survival with Fragile X." On it was this video found on You Tube. I failed to mention that July 22 was National Fragile X Awareness Day. I thought it was inspiring so I'm posting it.

OT and Literacy

2009-07-31T12:50:00.000-07:00

Today Pup's OT was a substitute as his regular OT is on vacation. I really liked her and so did Pup. I swear I'm going to throw a party the day this almost 15 month old can clap and bang things together midline. This skill he is still not getting. He's babbling a lot, cruising.....just can't bang anything together or put things in a container. He can take out, but not put in. I mean it. We will celebrate this skill as soon as I see it. In my efforts to make everything he owns have some sort of therapeutic value (haha) our "pop toobs" arrived today! These fun little ditties are used by his speech therapist and only cost about a dollar online. I ordered them from some office supply place as apparently they're good desk toys for stress relief. They make all sorts of noises and can be pulled, pushed in, bent.....I bought 4.

The Slinky Pop Toob!

And in my Mommy/Teacher efforts to create literate and language loving kids....I found one of my favorite Marilyn Burns books at the grocery store for just a few bucks in a bargain bin! She is a big math guru. Although it was a little over his head, The Greedy Triangle was a big hit with Al. Now that I think about it....I could blog about kids lit. as I am quite knowledgable....

Harry is still watching those My Baby Can Read dvds....although I am not by any means expecting them to teach his little brain to read, the vocabulary and language are rich. They are real life images, interactive, and he just loves them. They show a word, say it many times, and then show the image. It's LOTS of labeling and AJ is starting to recognize many of the words. I had forgotten about these DVDs for a while but brought them back out after a late night of informercial watching. They were a little pricey, but I think well worth it. Here's pup watching the DVD. I believe they're much better than Baby Einstein simply because they are interactive. Not that my kids sit in front of the tv all day. The kids have to participate by repeating words, moving their bodies.....this is more for AJ. Pup just likes looking at the images and the songs that are song. He loves music.

I'm struggling a little with my oldest son as he's in a phase where he's not interested in anything "good" for him. He takes piano....doesn't want to practice. He's not interested in our "learning time" anymore where we make letters with playdoh, etc. He did allow me to read him thebook which I felt I needed to be grateful for. I'm hoping he's not going to be "that" kid who won't do his homework. I'm a teacher and that has always been my biggest fear- that my child would be the child that didn't enjoy school. Maybe I'm projecting too far into the future. After all, he is only 4. I do find, however, that he can be bribed....with crackers. Today, for everything he practiced on the piano he was rewarded with Goldfish. I'll try anything once.

On another note....Husband took AJ for another bike ride tonight. Both came home upset. Apparently, Daddy makes him go "too fast...." He claims he will never be riding it again. Of course shortly after he asked to go tomorrow, but I had to assure him that he could go as slow as he wanted.

UNION!

2009-07-30T23:11:00.000-07:00

Got a call from our union pres. today. She says I should be hearing something next week about being rehired. It's wonderful news although my secret hope of maybe being able to stay home is gone. I knew I wouldn't really be able to do it, but alas, I'm happy to maybe be rehired. I decided also, today, that I would try to fix my own kitchen sink. I tried just to fix the leak but ended up taking out the whole faucet. I had to turn off the water because I'm not quite sure what I'm going to do now. I actually didn't do it myself. Pup's early interventionist did it. After an hour of therapy, she offered to help me with the plumbing. She's awesome.

I discovered this evening that my sister-in-law, who also blogs about family life, has another blog about her encounters with baking, cooking, and growing veggies. She has never mentioned this blog to me so I'm wondering if it's supposed to be secret. Probably not because she's just modest really. Anyway, it got me thinking that I really need to focus on doing things I enjoy as well. One can only handle so much work and child rearing. Do I even have any hobbies? Well, I do love teaching and I often obsess over things like improving reading and writing instruction. Perhaps I should blog about that? No, it's related to work. I don't want to only be what I do......I will have to think on this one.

Bike Ride

2009-07-28T21:10:00.000-07:00

Last night was my first Hanen class for parents. It was so good and I'm happy to be attending for the next 12 Mondays. Three of the weeks the SLPs will come to the house and tape my interaction with Pup to help me in my communications with him. We learned simple techniques like slowing down, giving choices, and waiting for responses. The class is based on the book "It Takes Two to Talk" and was provided for me by my regional center. They are amazing.

Today we got AJ his first real bike with training wheels and took him for his first ride. Of course he fell off, but he was ok. It was so cute.

Lots to catch up on

2009-07-20T21:57:00.000-07:00

Gee...I can't believe I haven't posted since March. Well, there is definitely too much to report but as I can, I will fill in some blanks. Pup is now 14 months and is doing well. He finally started crawling at about 12 months and is now pulling up to stand and can cruise if motivated by toys. I really wish he could clap and bang things together. His fine motor is kind of lacking. He doesn't, however, seem to have any sensory problems yet and sleeps pretty well. He's very friendly and loving. He enjoys much pressure on his face so he always welcomes kisses. AJ is still the best at making him laugh. He had his tubes put in and started making many sounds within the month after. Although he never had an ear infection before the tubes, he's had two since. I don't really know why. He also had surgery to correct a hypospadius. Poor guy. We have been swimming a lot at the PopPop and Mimi's and have a full schedule of therapies in place. Since my last post Pup started OT weekly (as opposed to once a month) and speech therapy once a week. I LOVE his speech therapist. She's so knowledgeable and so great with Pup. I believe he is her youngest client. Because of his diagnosis and the tubes, he was a good candidate for speech. My regional center doesn't advocate for it until kids are usually about 18 months. Next week we start a Hanen class for parents. I'm really looking forward to this.

I think the reason for my lack of posts was the stress I was under at work. CA's budget is a mess and I, a school teacher, was laid off. I have a verbal guarantee from my union that I'll most likely be rehired in August. I'm next on the rehire list. I'm keeping my fingers crossed. Now I'm off for summer and actually able to do things like laundry and housework. I'm also on a mission to lose some weight as I'm feeling that eating my way through stress is not good. We recently discovered picking our own fruits and veggies at a local farm. It was so much fun and the whole family could do it together. I think I will try to go every couple of weeks instead of going to the store. We went last week with my niece and brother in law who were visiting from out of town. It's nice to see the boys with their cousins. Pup is very interactive and so sweet. Totally different than how I thought he'd be.

Since March AJ also finished his first year of preschool as well was in a wedding! I'll post some pics.

Ok...more later. I'll be on a roll now.

Published!

2009-03-08T17:36:00.000-07:00

Shortly after the movie day with the folks of the Southern California Fragile X Association, the president contacted me. She had found my blog and asked if she could take my reflection about the movies and use it in the newsletter. I was thrilled. If it helps someone than I would be more than happy to share it. I can't figure out how to post it here, but I'll figure it out.

My nephew is now clapping. He's almost 7 months. I'm still waiting for Pup to do that. STOP COMPARING I'm telling myself. I'm so worried about so many things. Budget cuts to regional centers, losing my teaching job....So many teachers in CA are being laid off. This week I'm supposed to get the letter telling me that I may be laid off in May. I know I will cry when my principal gives it to me. At school this week we have to wear pink ribbons all week, we'll have informational picketing, and then a big rally on Friday. Times are so scary.

How Awesome!

2009-03-05T21:42:00.000-08:00

I officially have a favorite congressman.

Day at the Movies

2009-02-28T18:34:00.000-08:00

Today I saw fragile x for the first time. I attended a Family Fun Day for the So Cal Fragile X Association. We went to a free showing of Hotel for Dogs. It was hard, but at the same time, not. When I considered going I was scared, because besides Pup, I haven't ever met anyone with fragile x. With Pup I really can't tell yet, so I was worried about what I would see, how it would look, what the behaviors would be like.....I didn't know if I was ready for the reality of what fragile x is really like. I'm so glad I went.

It was hard "seeing" what it meant to have fragile x, but there were so many degrees of severity. I realize now that so many times I've probably seen people with fragile x and didn't realize that's what it was. It's funny how they are all so different, yet somehow all very similar. Some of the kids were hilarious. When I got home my husband asked how it was. I told him it was hard but wonderful at the same time. He can handle the various behaviors, etc, but his biggest worry are the tantrums we hear so much about. He's a man who loves going to restaurants, etc, and worries his life is going to drastically change. (Well....I told him to get ready cause it is!) He asked if any of the kids had any. There was one boy in front of me who was having a hard time. When I told him, yes, that there was one, he looked sad. But what was so amazing to me, and what I told him, was how no one bothered to even look. It was just so matter of fact. I loved that. I also told him that out of the entire room, there was only one tantrum and the rest of the group were laughing and enjoying themselves. When the movie was over, one boy stood up and shouted, "Movie dismissed!" It was so sweet. My husband looked so relieved. I reminded him that our "normal" kid has more tantrums than we can count. I guess what's scary to him (and me, too) is that the terrible 2s/3s seem to just last a little longer. No matter how they were, however, it was obvious that they were all so loved by their family members around them.

I met so many wonderful parents who are envious that I know so early. I am lucky to have the knowledge about my little guy. I know for many parents the hardest part is just getting a diagnosis. I will never have that worry, and for that I feel blessed. And I also wonder if how he is as a baby has any indication for how he'll be later. Who knows? I know he is going to be who he is and I will love him unconditionally. I hate myself sometimes for harping on it.

How Cute

2009-02-26T18:52:00.000-08:00

I know he's memorized it, but it's just so sweet.

Confused

2009-02-23T19:19:00.000-08:00

Ok...now I'm confused. I took Pup to the doc today because last night he had a horrible croupy like cough. The doc said we should for sure postpone the tubes on Thursday. I agree. Then he said he couldn't believe we were even getting them because Pup had never had an ear infection. This doc is a regular pediatrician and our older son's doc. He's not the pediatrician we normally take Pup too. He said we should wait out the winter. That tubes with no ear infections seemed pretty aggressive. He doesn't have experience with FX so I don't know what to think. I will email his dev. ped. tonight and see what kind of a response I get. THe ENT wanted to do it right away. The ped., however, said that ENTs are surgeons and generally like to cut. What should I do?

Can't EAT!

2009-02-19T20:27:00.000-08:00

Pup will not be able to eat at all from midnight until his tubes are put in at 9 am the next day. That will be a struggle considering he still nurses at night. I made the appt. for next Thursday! He'll get his tubes and hopefully his hearing back. Also, his PT will start on Monday! I'm so thrilled.

TUBES

2009-02-17T22:26:00.001-08:00

"You know....with Fragile X comes mental retardation. . . . But I wouldn't even know he had anything. He's not a funny looking kid."

This is the first thing the ENT said to me when we saw her today. Put a knife in my heart while you're at it. Sometimes the best scientists just don't make the best doctors. Because of that, she didn't want to delay in putting tubes in Pup's ears. "He's already at such a high risk of developmental problems we shouldn't wait." As much as I was all for her get to it attitude, she could've spared me a ride on the Straight Talk Express. Sometimes a little kindness goes a long way. At least she knew what fragile x was. For that I was grateful. It was just a reminder that those "Check with your doctor if you are concerned about your child's development" passages in all baby books and baby websites apply to me.

Anyway, Pup will be getting tubes in his ears within the next few weeks. Another hurdle conquered????!

The Day Has Come

2009-02-16T11:01:00.000-08:00

Well, the day has come, and because I know my sister reads this I feel ok writing about it because I could not talk about it without crying. I'm starting to see her son (3 months younger than Pup) do things that Pup is not. He's babbling a whole lot and is already sitting up- way earlier than Pup. I know there are ranges in all babies and I shouldn't compare, but it's so hard not to. I know it'll get worse and eventually he'll "out do" my kid. I know his whole life I'll see differences between my child with fragile x syndrome and typically developing kids but as he is only 9 months I wasn't really seeing it yet. The day has arrived where it's happening and although I know he'll get there it just breaks my heart a little because fragile x is real and it is happening. Ok....no more whining or pouting. I know I need to suck it up and just be happy that he's doing as well as he is because I know it could always be worse.

On another note, Baby Hank (my baby nephew) is SOOOOO cute and since he's the first niece or nephew I'm around a lot I can't believe how much I adore him. It makes me a little sad that my niece Darcy is not around more to share the joy of all the cousins being around to play. It's hilarious to see Pup and Hank roll around together on the floor- especially because they are so close in age. Angela, if you are reading.....move closer. Love to all.

ENT

2009-02-13T22:26:00.001-08:00

"Roses are red, sugar is sweet, and so are you." This is how AJ said bye to me today. He told me he learned about loving people at preschool. Hugging meant you love someone he explained. He keeps reciting the Roses are red....It's so precious. He also had to make his first set of class V-Day cards for the kids in his class. I thought it would be a nightmare trying to get him to write his name 16 times, but he loved it! He can write the first two letters of his name (which is our nickname for him.) I'm glad he loves school although I wish he was a bit more outgoing. He's VERY reserved and doesn't like to try many new things. He has been learning sign language, too. One of the parents is an interpreter and comes in to teach various signs. He knows some foods and some signs for various commands. It's really cool. Typical male already set in his ways??? When shown the word elephant, hi, and arms, he can "read" them although I know he's just memorized the shapes of the words. Anyway, he's wonderful.

I had to take Pupster to Hearing Conservation again to recheck his ears. He has fluid in both ears now and about a 30% hearing loss. I have an appointment with the ear, nose, throat doc on Tuesday to take the next steps. He'll need tubes most likely. I guess that's the benefit of an early diagnosis. He's never even had an ear infection! When I asked how I would've known he had fluid in his ears if he didn't have FX (the reason the regional center sent me to get his hearing checked- a procedure done for all clients) the audiologist told me that he most likely would've been speech delayed and the doc would've sent me to rule out a hearing problem. Only then would I have found out that the whole time he could only hear about 70% effectively and that for him it was like having fingers in his ears. Thank goodness for Regional Center. I hope they just put the tubes in. I don't want to wait a long time to "wait and see." Plus, with the horrible economy in CA I am facing education layoffs. I can't lose my insurance! I will try to have anything that needs to be done before that happens....if it happens, which my gut tells me it'll be ok.....

He had a great therapy session today. The infant specialist did some fine motor activities. We are working on pulling pegs out of a board and items out of a bowl. He's sitting up and very close to pushing himself up to sit by himself. He's also on the verge of crawling. He assumes hands and knees, rocks back and forth, and put out one knee. We're still waiting to begin PT which was approved for once a week.

This is a video clip of Pup in his Exersaucer (which I've been told to use only minimally) bouncing around while his big brother makes him laugh. It is hysterical. At least it is to me, but I'm his mom.

2009-01-29T20:10:00.000-08:00

AJ and Pup- Best Buds

Pup at 8 months

Long Time No Blog

2009-01-29T19:49:00.000-08:00

Ok, so the boys are sleeping early and I have some time! A lot has happened in the past two months. Pup had a great first Christmas and AJ got his kitchen and beloved BBQ tools from Santa. We brought them to see Santa and it was hilarious to see him ask Santa for BBQ tools. His grandpas bbq a lot. It was darling.

Pup has been doing well, but the day has come where the delays are starting to present themselves. He's now 8 months old and is starting to sit up really well and is almost ready to crawl. I can give him a Gerber "Puff" and he will self feed. At a PT evaluation he was found to have only emerging protective stem reflex when it should've been mastered by now. On a positive note, he did have some solid 8 month skills. So, he'll now have PT once a week on top of his regular infant teacher on Fridays. He also started to get OT monitoring once monthly to track/monitor his progress. He had that today and the OT thought he looked pretty good.

Puppy is now 8 months. Here's what he's doing:
smiling a lot (He's got 5 teeth)
Assuming hands and knees (should be crawling soon)
Sitting up unassisted for a longer time (starting to use his hands to keep himself up)
Transferring objects from one hand to the other
Beginning to self feed
Eating table foods (like potatoes, carrots)
Has liked almost every food we've given him
Saying lots of ooohs and aaahs but still not many consonants. I think I'm hearing mmmmmm and sometimes da da (but I'm not sure)

Dr. Hagerman is really concerned about his speech and wants him to get speech therapy now, but the regional center won't even look at him until he's 12 months. I'm thinking I may need to seek private therapy or see if insurance will cover it but I don't think they will. What exactly could they do at this point anyway? Any other moms have advice on this one?

Upon last well baby exam, Pup weighed 16.13 pounds. He's so much smaller than AJ was. His eardrum was still retracted so we are going back to Hearing Conservation to recheck his hearing. He will probably need tubes. At least he's had no ear infections and has remained healthy.

I found this infomercial for a set of DVDs called "Your Baby Can Read" promising to stimulate your baby's reading/language/communication skills. I read reviews, watched the commercial and bought into it. I don't know if it'll teach him anything but the videos are entertaining and educational as well as good for developing vocabulary. I don't know if it'll do anything for a child with fragile x, but I figure it's better than doing nothing. It comes with books, word cards, pictures....AJ likes it, too, so if anything it'll help him. It also forces me to spend more time with the boys which really is the ultimate goal. It'll also help to give Danny something to do with them when he's home with them during the day.

Snow!

2008-12-22T10:16:00.000-08:00

I'm so annoyed with myself for not bringing my camera, but we went to the snow yesterday with the boys for the first time to go sledding. AJ had so much fun going down the hills. Dan and I took turns taking him down while someone held the baby. I was too scared to have him go down the hill. It was cold but not unbearable. There were lots of people, too, so parking was a little complicated. This is what it's like when it doesn't snow in your backyard. You have to drive to it. I'm so glad that Dan refused to let me throw his sleds away in one of my "Let's declutter" moments. I believe he actually pulled them from the trash can, but they worked very well. We definitely have to get some better snow clothes, though. Watching me on a sled was hilarious. That's something I don't ever think I have done. I was scared at first but kept wanting to do it again. It was exhilarating. I've never fancied myself as much of an athlete but maybe I could do skiing.

Piano Lessons

2008-12-18T21:09:00.000-08:00

Today was AJ's first piano lesson. He was a little less enthusiastic as I thought he'd be, but I guess he's only 3 so it's to be expected. His teacher was so great and very patient. He learned where middle c was and got to explore the keys playing "Echo" with his teacher. His teacher would play out a rhythm and AJ had to echo it as best he could. When he wasn't being stubborn he did well.

Pup was hilarious tonight. Although I haven't heard baba in a while ( so sad...) he IS making a new noise. It reminds me of the sound you make when you prepare to play a trumpet. I can't really explain it. Anyway, he's pushing up on his hands really well now and is sitting up for a lot longer before tipping. I was told he doesn't have the instinct to put his hands out in front of him when he's falling so I have to practice on a ball....pushing him forward to get his hands out in front of him. It's weird as I don't know if AJ could do that....

I got in touch with a cousin from my father's side of the family tonight. We have spread the word about fragile x in our family and I'm not so thrilled to learn that many family members have tested as carriers. Thank goodness for Jules' doc who made the discovery.

OT Evaluation Today

2008-12-10T13:35:00.000-08:00

Puppy had an OT evaluation today (Occupational Therapist) for fine motor, etc. So far, she said he's on track with typically developing kids so her recommendation was not to have OT at this time. He was grabbing things, pushing up on his hands, etc. That is, when they weren't in his mouth from all the teething. AJ kept watching saying, "Look, Mom, he's doing well." He and Daddy played with blocks while the therapist was here. She did say she had some concerns about some gross motor things. She felt he should be sitting up better at this point, but she's really not sure and would consult a PT to see if it warrants any physical therapy. So all in all, good news today. He was very smiley and happy. It wore him out so now he's. . .

Yum!

2008-12-09T19:43:00.000-08:00

We took Pup to Disneyland for the first time.....an annual holiday adventure. He went on Dumbo, Pirates of the Caribbean, and others. Of course, with the exception of during this picture he wasn't at all fussy. It was a good day.

Here's A.J......He IS his mama's son for sure.

Pup tried carrots tonight. Liked them. His teeth on the top are really coming in. Drool everywhere and lots of hand biting. He's always laughing, especially at his big brother. It makes me happy. I just got the new issue of the Fragile X.org newsletter and there's an article in there by Jayne Weber that completely made me cry. It's all about the good that comes with having a child with FXS. I've been in a rut lately thinking about the future. Then I hear him laugh and I am healed. I'm having a really hard time lately, though, because as a teacher I have a few kids in my class with some special needs. One has autism and the other two don't have diagnoses but their behaviors are challenging, and they have definite learning disabilities. I think about Pup and what he'll be like when he's in school. Other teachers and even parents of other students are sometimes insensitive with comments about certain students, and I'm particularly sensitive to those comments now that I have my own child with special needs. I want to say, "Don't you know who you are talking to?" People don't get it.

OMG! I just turned around and AJ is playing "therapist" with Pup. They're doing "exercises."

Getting Brave

2008-12-08T21:42:00.000-08:00

I've decided to start adding pics to the blog, as I love seeing everyone's photos. Here are AJ (aka Peter Pan) and Pup (the scary skeleton) in their Halloween costumes. Pup is now almost 6 1/2 months old. AJ is 3 1/2. They are best buds.

Pup is really enjoying solid foods. He's now eating sweet potatoes, squash, bananas, cereal, and started applesauce. Yum! He's opening his mouth and gets excited when he eats. (Don't we all?)

Top teeth are coming in.

Thanksgiving Therapy

2008-11-29T08:44:00.000-08:00

So, as usual I ate my way through two days of Thanksgiving festivities. The 4 pounds on the scale prove so.....Pup had sweet potatoes. He is really getting the hang of eating from a spoon. He will open his mouth, take the spoon, and then put his fingers in his mouth. Sometimes I have to hold down his hands to feed him. Last night at the mother-in-law's Friday Thanksgiving feast, he cried in between spoonfuls. He couldn't get it fast enough.

Pup had Lucia (the infant teacher) come out on Friday. She didn't want to miss a day! He lasted the whole session without getting fussy. He's finally doing better on rolling over from stomach to back although he doesn't really do it unless prompted with a toy, etc. She told us to start massaging his hands open as she feel that's one area is a bit behind in. She feels his palms should be open more. He resisted her massaging them as they were pretty tightly closed. He did, however, sit up for about 5 seconds before falling to the side. She told us to just keep him on the floor as much as possible and gave us a list of things to tell the OT (occupational therapist) for the evaluation on the 10th. I'll take a 1/2 day that day so I know what's going on. It's hard to work with therapists,etc. coming to your house. Lucia said that the OT will come 1 to 2 times a week depending on his/her evaluation on top of the time Lucia comes! I asked her how many times she thought he may need depending on her work with Pup, and she said it'll depend on the OT. She said that it will also depend on how Pup does during the eval. If he's really fussy, etc. and not wanting to do anything he may get 2 times a week. I don't really know which is better? Is more times a week better?

I keep worrying that he can't hear me based on the hearing test. I mean...I know he can hear, but I don't know how well. Dr. K. said it was like he had a finger in one of his ears. I've been putting my own finger in my own ear and it's not pleasant. Maybe I should just stop. haha

So thrilled

2008-11-25T22:11:00.000-08:00

I came on here tonight and didn't realize that people were posting comments! I'm so happy you are all reading.....
About the eye contact... I agree with all of you. If he's a comfy distance away he'll stare right at you. At his well baby exam last week (6 months!) the regular pediatrician said he had a slight gaze aversion also. But I think he was looking for it because he had just read Dr. H's report. I'm not discounting the fact that he has FX, but I don't think he would've thought anything if he didn't know Pup had fragile x. What baby stares at your face for 10 minutes! He's doing well and that's what I'm grateful for this Thanksgiving. Considering I prepared myself for a floppy, poor feeding, etc. baby during my pregnancy so far I've been blessed. I hate Fragile X and what it's done to my life. I'm tired of analyzing everything he's doing. I just want to love him and I think that's what I'm going to do.

His ears have to be watched as he didn't do well on the right side on his hearing test. He may need tubes although he hasn't had any ear infections.

Anyway, I think Pup started saying baba tonight....I can't be sure but it sounded like it. Maybe if I believe it it'll be true.

AJ, at school today, said that on Thanksgiving he's going to eat PB and J sandwiches. I thought that was funny.

6 month well baby

2008-11-12T22:25:00.000-08:00

Today was Pup's doc appt. He got his first flu shot. You'd never know he got four shots. No fussing at all. Dr. K. said that Pup is having some gaze aversion so I need to be "in his face" and rewarding him with smiles when he looks at me. This makes me so sad as in many ways I'm still in denial. He seems so perfectly normal..............He will also have to watch his ears as the right one is blocked. I'm hoping he doesn't need tubes.

DH and I both got to pick up AJ from preschool yesterday. We watched him through the observation room and saw him in the kitchen area wearing a necklace and bracelet. Then he went to string some beads. He's so funny to watch. The teacher says he loves school and seems very happy. He's still a bit shy, however, and doesn't really know how to approach the other kids when he wants to get into their activities. He'll ask, "What can I do?" to the teacher, and she has to help him join in. I love them both so much.

LAUGHING!

2008-11-08T16:01:00.000-08:00

DH was making Puppy really laugh this afternoon. He got real close to his face and kept saying "I see you." Pup was hysterically laughing! It was so cute, and it was a first.

Minocycline Over

2008-11-04T19:43:00.000-08:00

So, Puppy did really well on the medication. No reactions at all. I had to keep a weekly journal for the Dr. and did so. I thought about posting it here, but decided not to. When I went back up to the MIND Institute to reevaluate him after the meds, Dr. H. was impressed by his progress. Although I don't really know if his progress was because he was a month older or if it was the meds. Who knows.......as long as something is happening I should be happy. He became a lot more focused and interactive. He's laughing more, smiling, getting really stong. He's doing crunches, like a sit up and is balancing for a second or two in a sitting up position before falling over. He also rolled over from stomach to back (he was already doing back to stomach) a couple of times....but on this he's stubborn.

Pup also got his first two teeth! The bottom two and I don't think they're discolored which I thought might happen because of the meds.

Halloween was fun. Pup was a skeleton and AJ was Peter Pan. It was fun taking him trick-or-treating for the first time. Everyone thought he was Robin Hood. When one man asked him if he was Robin Hood he said, "No I'm Peter Pan." The man replied, "Oh, Peter Pan!" and AJ said back, "Yeah, whatever you want to call it." He's only 3 and the things that come out of his mouth are hilarious.

His preschool had a fall family festival last week. It was fun seeing him in his element. He introduced us to Teacher Tina, showed us his classroom, and of course....went to play in the kitchen area. He's such a crack up. He has access to so many toys but all he wants to do is pretend to cook and BBQ. DH and I will get him a kitchen or bbq for Christmas. I know he'll love it.

Even though he likes what he likes at school, he is venturing out into new things there. He chose to paint for the first time and is attempting to ride the tricycles they have there although he's still a bit timid. I hung his painting in his room where he wanted to look at it everyday.

Today was election day and I took AJ to the polls with me. He said he was going to vote for Aunt Kelly.

Day 1

2008-09-17T20:23:00.000-07:00

Yesterday was Puppy's Second Visit to the Mind institute. New research has indicated that a drug called minocycline may have a positive effect on Fragile X. Dr. Hagerman proposed a 1 month trial with Pup.

Basically Puppy had a clinical visit, then met with the baby Research team, for several eye tracking tests. He also performed the Mullins and Vineland Assessments to give us a baseline of development. Puppy would then take the medication for 4 weeks and repeat the tests.

In the Fragile X Knockout Mice, the positive effects were seen over 8 months later. Side effects could include a graying of his teeth, but it was likely that his adult teeth would not begin to calcify until he was 6 months old, so this was the perfect window of opportunity.

Pup is the 2nd baby to try this. The first is a girl and I've been in contact with her mother who helped me in telling me how to administer the drug so Pup will take it. We talked about our concerns and how we were the first moms ever to have to do this. But we realize that whatever we do is out of love. I was very concerned about the fact that minocycline is not given to infants typically, but I was assured that it could only help. Tonight was the first night of administering the med. I fed him at about 7:00ish and then gave him the medication at around 8. I mixed it with apple juice and a bit of sugar and gave it to him with a medicine dropper. I think he got it in his mouth although there was a bit of spitting out. At least he took it. In fact he kind of lapped it up. Perhaps I made it too sweet! I immediately calle d Holly's mom (the other baby) to find out how she stored the rest of the capsule. We had a nice chat.

As part of the study, I was asked to keep a daily journal, which I will be posting here.

Rolling Over

2008-08-03T00:19:00.000-07:00

Puppy rolled over today for the first time totally unassisted!!!!! He's only 2 1/2 months old. That's younger than AJ was. He was about 4 months old when he rolled over. So, that's one milestone achieved.

Today we hosted Fragile X Awareness Day for the family. D and I showed a FRAXA DVD, a powerpoint presentation, and everyone got a binder full of FX info. I felt like such an advocate for Harry. Everyone was so great, too. AJ slept through it but that was better.

AJ is learning how to dive in at swimming. He's also crying less. We've asked his teacher about hiring her privately after the session is over.

Next week Pup is going to the UC Davis MIND Institute to see Dr. Randi Hagerman. I'm excited about meeting her and her staff.

Firsts

2008-07-23T09:58:00.000-07:00

Puppy has just started smiling! Unfortunately, today he has come down with his first cold. He's a little warm and is sneezing. Poor baby. We saw the pediatric specialist yesterday and he was awesome. He was so nice and actually knew all about FXS. This was such a relief. It was a little sad, though, because he noticed some of the little physical features Pup has related to FX. In my heart I felt maybe there was a chance it could be a false diagnosis. Now it's confirmed. His advice was for now just to love him and treat him like any other baby. We also finally had our first IFSP meeting yesterday. Puppy will start therapy this week. Our first appointment is on Friday to fill out some paperwork.

AJ will not stop crying during swim lessons. He keeps asking for mommy and daddy! At least he's not being disrespectful. And although he's crying, he's still swimming and doing well! He's been dong a lot of planting at Grandma's house. He enjoys this.

At last!

2008-07-18T00:03:00.000-07:00

Today, our service coordinator called. Puppy has finally (after a month of waiting) been found to be eligible for services. We have an meeting on Monday morning to talk about his goals and hopefully therapy will begin soon after. He's starting to smile and it just melts my heart. I'm just dying inside because at some point his delays will become noticeable and all of this will be real. At 2 months of age you can't tell. He looks normal, he's acting normal, and sometimes I think to myself that the test was wrong. What if he was misdiagnosed? I know it's not true but my heart wishes it so.

Today my mom and I took the boys to the park. AJ refused to go into the water fountains and wanted to lay on the blanket. His shyness is really bothering me, but I guess if he's content I shouldn't worry. His swimming is coming along although he's been giving his swimming teacher a hard time.

MIND Institute

2008-07-14T13:51:00.000-07:00

So, the UC Davis MIND Institute called today! They want to see Pup next month and make him part of their baby study. I'm thrilled to be seeing Dr. Hagerman, one of the renowned doctors in Fragile X research. I'm a little worried because it's possible that AJ could be a premutation carrier. They want me to have him tested. I thought for sure he was spared.

Yesterday was J's baby shower. We had a great time and AJ's swimming is really coming along. Of course, today at swimming lessons he wasn't as brave. At least I know he can do it.

Thrilled!

2008-07-08T16:46:00.000-07:00

I'm thrilled about the July 7 Time Magazine. There's an article all about Fragile X Syndrome. Never before had I ever even heard of it. Now, it's in a national magazine. It couldn't just be coincidental. I don't believe in that. Now, maybe if people ask me what Puppy has they'll recall the article they happen to see in Time Magazine when I tell them. At least there may be some awareness. I feel like it's this orphan disease....all alone out there.

Anyway, it's been a good week. We spent the 4th at Pop Pop and Mimi's. AJ swam with his uncles. DH didn't come. He's still not quite ready to socialize. I'm hoping he'll get over that soon. We have his brother's and my sister's baby shower this weekend. He needs to be cheery.

Day at the Park

2008-06-27T22:57:00.000-07:00

Today my mother and I took Puppy and his older brother, my 3 year AJ, to the park. AJ had so much fun running through the sprinklers. I'm trying to get him to play with other kids as he's so shy. He kept running up to the water and then right before approaching the other kids he would run back saying he couldn't do it. Eventually he went in. I'm hoping preschool, which starts in August, will make him less afraid and more social! He's my angel. Puppy just chilled out with his Grandma who packed us a nice picnic of sandwiches, drinks, watermelon, and cookies. After, we went back to my mom's house where AJ played with my sister's new dog, a Boston terrier named Scotty. I wish we had a big enough place for a dog.

Doc Visit

2008-06-24T21:49:00.000-07:00

Today was my post partum appt. It's been 6 weeks since the baby has been born. My OB says she is going to start screening for Fragile X Syndrome. I am thrilled! Maybe another woman can be spared not knowing this is in her family.

First Evaluation

2008-06-23T15:31:00.000-07:00

Today an occupational therapist came from our regional center to evaluate Puppy. She was very sweet and well meaning but I couldn't help but become angry when she left. I have read so much about FX now at this point and have spoken to so many people that I am kind of aware of what to expect as my son develops. She said that she didn't know much about FX, but had looked into it before coming to our house. She said that he may not have any delays and he may be just fine. I asked her how that was possible and she just said it was. Now, I know that's true for girls, but it's not true for boys.....is it? Wouldn't that be great? Anyway, she said the baby should start receiving services (probably 1 time a week) within the next couple of weeks.

Anyway, Puppy, 5 weeks old, was able to track objects and has good muscle tone. He's easy to soothe and has a nice temperament. This is what she told us.

First Meeting

2008-06-22T22:53:00.000-07:00

Some background first:

Fragile What? I had never heard of it either. Fragile X is the most common inherited cause of mental impairment. It is also the most common known cause of autism. It is second to Downs Syndrome as the leading cause of mental impairment. Fragile X affects 1 in 4000 males and 1 in 6000 females of all races and ethnic groups (source Centers for Disease Control (CDC)). About 1 in 259 women carry fragile X and could pass it to their children as I have. About 1 in 800 men carry fragile X; their daughters will also be carriers. Many carriers also face side effects. It is carried on the X chromosome, so women who are carriers have a 50/50 chance to pass it on to their children. Men only pass it on to their daughters.

There are two mutations of the gene: premutation and full mutation. Carriers have a premutation of the gene -- like I do --where there is no mental impairment but other side effects. My son has a full mutation, which means one gene has shut down causing delay and mental impairment. Every persons X gene has a ‘repeat’ number. Normal people’s repeats are less than 55. Carriers like me, our repeats are 55-200 and once the gene mutates and repeats over 200, there is a full mutation.

We call my son Puppy because he grunts and winces like one. He's adorable. He's five weeks old and he has Fragile X Syndrome. Puppy was diagnosed at 2 weeks old and this is rare as most parents don't receive a diagnosis until their kids are older. He was diagnosed so early because I learned I was a carrier at 28 weeks pregnant. My sister, also pregnant, had an OB who screened for Fragile X Syndrome. She learned she was a carrier and told me I may be one, too. When I got screened for it, sure enough, I, too, was a carrier. I chose not to have an amnio as the baby was coming no matter what. When Puppy was born we had his blood tested. Sure enough, he was diagnosed with a full mutation. The news (still so fresh as it was only three weeks ago) is still very fresh as is the wound. We have been pretty proactive in terms of getting him some early intervention. We even have an OT coming tomorrow for an infant evaluation. I'm hopeful that with early therapies he will be able to reach his full potential.

I guess I am the most concerned about my older son. He's 3 and does not have the fragile x gene. One of the only reasons I had another child was so he could have a friend, someone to be with when my husband and I pass. I feel like this will not be the case now and that maybe I've created a burden for him. I know that Puppy's only 5 weeks old and I shouldn't even go there yet, but it's hard not to let your mind go to the darkest places. Anyway, I need to take it one day at a time.

So anyway, my husband and I went to our first support meeting today. It was so great and I met some fabulous moms. It was nice being around other parents who know what fragile x even is. Fragile what??? is what most people say when I talk about it. This is very disheartening, but it was awesome to be around other parents who have experienced what I will be going through.