Adventures In Holland

Thankfulness

2009-11-25T13:39:00.000-08:00

1 Thessalonians 5:18 give thanks in all circumstances, for this is God's will for you in Christ Jesus.

So Thanksgiving is tomorrow and I haven't posted anything in quite some time, but here I am...and feeling thankful. Yes, Fragile X is still causing it's share of havoc in our family, but we are blessed to have 2 healthy children. Tim has a good job that he enjoys and he is able to support our family and allow me to stay home. We have a stable, loving marriage. We don't have any crazy meddling in-laws or Jerry Springer dramas(not in the immediate family, anyway!). Our kids have caring, dedicated teachers, and we are blessed with great friends. All in all, much to be thankful for. Most of all for God and his Son, Jesus, we are thankful.

For God so loved the world that he gave his one and only Son, that whoever believes in him shall not perish but have eternal life. John 3:16

Bullies

2009-03-06T07:02:00.000-08:00

Oh, let's see....where do I start? Generally Justin seems to be very popular among his classmates. They argue over who will sit next to him at lunch and who will hold his hand on the stairs. The kids in his class are all very sweet to him. Last Thursday, I was there for their fundraiser Fun Run. The kids were all running laps and the teachers are all at the start/finish line marking their t-shirts at each lap. So just past the start/finish all the teachers backs are turned and I see a kid from another kindergarten class run up behind J, grab the back of his shirt, jerk him to the ground, and then take off running. I was in shock. And torn between checking on my child and chasing the other one down. Of course I had to go check on J, and he just dusted himself off, smiled, and went on. By then I lost track of the other kid (they were all wearing the same shirt, and I only saw the back of his head). I didn't say anything about it at the time because I couldn't identify who did it, and Justin wasn't upset.
So this week I got this note from his teacher "Last Thursday, at free play, we had a little incident. Justin went down the slide and there was a child at the bottom of the slide- Justin kicked the child to get him to move. The boy preceded to try and hit Justin back. Of course Justin did not know any better so he started swinging at the child and anyone around him. I calmed both of the children down and talked to the little boy who tried to hit Justin back. I let him know that it was not okay for Justin to hit him, but sometimes Justin just acts. I also told him that he should NEVER hit a child back if they kick or hit him. The child was told to come tell an adult if Justin put his hands or feet on him again. I found out today that the very same incident happened at P.E. yesterday. One of the aides told me that it was with the same child. She told me that she did not know who started the hitting, and I let her know that I talked with that child and he knew that if Justin put his hands on him to go tell and adult and not hit back."
Free play would have been in the afternoon after the fun run, but I wonder if J and this kid have had prior incidents that the teachers didn't notice or report. So anyway, I did go to school & tell the teacher about what I saw at the fun run and she is going to talk to him and see if it might be related. I just can't imagine why a kid in another class would choose to target J as it seemed he did during the fun run.

And on the other end, Justin can also be a bully. We had a younger boy (also with FX) over to play one afternoon this week and J did NOT want him playing with his toys, and kept taking things away from him and shoving him. He only does this when he feels like something is 'his', not at school, but it's definitely something we have to work on so we can have friends over to play.

2009-02-23T18:09:00.000-08:00

Haven't posted in quite a while. I've been meaning to, but it's hard to make myself do it at times. I went through a valley a few weeks ago worse than the initial diagnosis. I guess we had a few particularly bad meltdowns, and the realization that he's only 5, and the fear that it could get a LOT worse. I dunno, but I spent the better part of a week feeling that I could burst into tears at any moment and did a few times. That is very much not like me...I cry over sappy movies, yes, but real life very rarely. I finally told my Sunday School class, asked for prayer, and began feeling better the next day. So anyway....I'm finding myself praying more, and feeling more optimistic.

Every time I go to school either a teacher, an aide, the nurse...somebody, always stops me to tell me how much they love Justin. "He just smiles all the time", "he's the happiest kid I know", "he just lights up my day", etc... one even told me "everyone should have a child like him". I am thankful beyond measure for this - he obviously saves his worst behavior for me. I suppose that is a good thing, but it also wears on me emotionally that they get so much of the loving, happy Justin, and I get that mixed with outbursts of angry, violent, wild Justin. If only I could keep him the loving, happy, smiley boy all the time......

Facebook has taken over my life

2009-01-29T13:40:00.000-08:00

Well, I wasn't very good at blogging before, but now I'm never here at all! Facebook has taken control of my computer...

Anyway, what's new...well, Justin is just gradually getting more and more aggressive and I had a bit of an emotional breakdown about it a few days ago. I'm better at the moment and working on a plan to try to get that under control. We are journaling everything, trying to identify triggers, searching for a behavioral therapist, and trying to get another appt with the neuro to discuss meds. We appreciate all of your prayers.

Most of Birmingham is abuzz with the possibility of snow next Monday/Tuesday. Lindsey is now nine and she has seen snow twice in her life and both were maybe half an inch. So snow is a big deal - I hate it, though. Anyway, I have to go buy carrots today just in case we need a snowman nose. :)

And it sneaks up on me again!

2009-01-05T07:03:00.000-08:00

Every year Lindsey's birthday does this to me. I always say I'm going to plan ahead, but then Christmas gets chaotic, and then we are just trying to recover from the chaos and get through New year's, and then it's time to take down the decorations, and suddenly Lindsey's birthday party is this Saturday and I've not sent out one single invitation.
I tried to get her to have it at one of the pottery painting places, so I don't have to deal with the mess and clean up, etc, but she wants to have it at home again. She just wants a very few friends and family, thankfully.
So anyway...I guess I've got to get invites mailed out today. I so wish her birthday was maybe a week or 2 later so it wouldn't do this to me every year. But given how miserably large I was, and the fact that she was over 10 pounds, I don't think I could have survived being pregnant much longer anyway.
I think I had more to type, but suddenly J is here 'helping' me, telling me to 'push the green button'....

A Visit with Santa 2008

2008-12-20T05:43:00.000-08:00

So Friday was the last day of school for the munchkins. Christmas for the teachers was more of a challenge this year as J now has his regular ed teacher, a special ed teacher, speech therapist, OT, 6 different aides, and the nurse. I wish I had seen Betsy's Pretzels a few weeks ago - they would be an awesome teacher gift. I made Chex Muddy Buddies(AKA puppy chow) and gave them all $5 Starbucks cards.
Thursday we went to their class parties and then checked them out an hour early and took them to the mall to see Santa. Yay, I'm so glad we went when we did! There was only one family in front of us in line! Justin has refused to have any part in sitting with Santa ever since the Screaming Fit of 2004. Yeah, it's awful, but it will probably always be my favorite Christmas picture ever, because it's the one that makes me laugh every time.

But this year he joyfully walked up, said "Hi Santa" hopped up on his lap and in the very first snap, we got this amazing picture. What a difference a few years make!
He didn't stay long, but he handled it well and we were proud of him. They gave us coupons for a free cookie for each of them, so that part was great too. He wasn't happy on the way out because he kept seeing toys and he didn't like the idea that he was leaving without getting anything other than a cookie. Yeah, patience is not his strong suit.

Ollie is back this year, and our elf brought a note from Santa this morning. Apparently Ollie has seen the meltdowns and the disobedience, but he has also seen some very kind and loving behavior too. Maybe the reminder will keep them in check for a few more days. One can only hope, right? I'd hate for Santa to bring them nothing but coal, but I have a feeling Santa will be kind to them this year.

I need to get busy wrapping stuff today as I've only wrapped one present so far. Oh and I've not yet sent out one Christmas card. Yeah, queen of procrastination, here, I know.

Thankfulness...

2008-11-25T17:45:00.000-08:00

Things I'm thankful for, some more serious than others, and not necessarily in order...

My Lord and Saviour, Jesus Christ
My family, immediate, extended, even my in-laws are awesome. I could go on for days just on this one, but I won't, because it would cause me to miss turkey dinner.
That reminds me...yes I'm thankful for dinner, and the turkey who gave it's life for us. And dressing (Yummmm!), sweet potato casserole, rolls, dessert....yuuummmmeee!
Friends....how would I survive without you?
The internet, as it has allowed me to connect with many new and old friends.
Kindergarten. J knew about half of his letters in August, and his IEP goal was to know them all by May. He knows them all, uppercase and lowercase, and can tell you the sound they make. And, I have a life of my own between the hours of 8 and 3 - it's awesome.
Teachers who care - they make a world of difference.
Hubby's job, which allows me to stay home.
My DVR. How did we survive without it? We love it so much hubby and I each have our own. Actually I share mine with the kids, which means I watch a LOT of Dora and the Backyardigans.
This country, the freedoms we enjoy here, and the many who sacrificed to make that possible.
Take-out Chinese, because my kitchen is currently clean, and I'm not cooking tonight.
The 11-0 season the Crimson Tide has had thus far, and the hope of beating Auburn for the first time in quite a while - Roll Tide Roll!
My parents, for raising me right, & for telling me to marry hubby anyway, in spite of the fact that he's an Auburn fan AND a yankee.
The current drop in gas prices - wow.
Slice and bake cookie dough - that's good stuff.
My church family, a fantastic pastor, and great teachers.
The Hagerman's, Steve Warren, Dr Berry-Kravis, and the many other specialists, researchers, educators, & therapists who have made huge differences in our lives and who continue to work towards finding better treatments for our kids.
All of the Fragile families who work together to help and support each other through this journey.

There's more I'm sure...but my crossing guard is ready to go out and direct the holiday traffic in our neighborhood, so I better go keep an eye on him. Happy Thanksgiving to all!

Penguin, James Penguin

2008-11-25T09:06:00.000-08:00

I only have 1188 songs on my iPod....
My musical tastes are, well, odd at best. Hubby says it will be the sign of the apocolypse one day when I hit shuffle and we hear Amazing Grace, followed by Superfreak. Many years ago, when I had my albums alphabetized I used to laugh that it went from Amy Grant to ZZ Top.

Anyway, I found this on a couple of different blogs and decided to give it a try.
Thanks to Paula’s Place: http://paulafasciano.blogspot.com/ and Holly Daze http://hollyzzdavis.blogspot.com/ for this one. :)
1. Put your music on shuffle.
2. For each question, press the next button to get your answer.
3. YOU MUST WRITE THAT SONG NAME DOWN NO MATTER HOW SILLY IT SOUNDS!
4. Tag ** friends who might enjoy doing the meme as well as the person you got the meme from.

IF SOMEONE SAYS "IS THIS OKAY" YOU SAY?
You Might Think - The Cars

WHAT WOULD BEST DESCRIBE YOUR PERSONALITY?
I'll be Home For Christmas - Brad Paisley

WHAT DO YOU LIKE IN A GUY/GIRL?
Rumor Has It - Clay Walker

HOW DO YOU FEEL TODAY?
Summer Highland Falls - Billy Joel

WHAT IS YOUR LIFE'S PURPOSE?
In a Little While - Amy Grant

WHAT IS YOUR MOTTO?
Huckleberry _ Toby Keith

WHAT DO YOUR FRIENDS THINK OF YOU?
Must Be Doin' Somethin' Right - Billy Currington

WHAT DO YOU THINK ABOUT VERY OFTEN?
Sapphire Bullets of Love - They Might Be Giants

WHAT DO YOU THINK OF YOUR BEST FRIEND?
Good to Go to Mexico - Toby Keith

WHAT DO YOU THINK OF THE PERSON YOU LIKE?
Yes! - Chad Brock

WHAT IS YOUR LIFE STORY?
She's Got a Way - Billy Joel

WHAT DO YOU WANT TO BE WHEN YOU GROW UP?
Online - Brad Paisley

WHAT DO YOU THINK WHEN YOU SEE THE PERSON YOU LIKE?
Redneck Woman - Gretchen Wilson

WHAT DO YOUR PARENTS THINK OF YOU?
It is Well With my Soul - Wayne Watson

WHAT WILL YOU DANCE TO AT YOUR WEDDING?
There is a God- Valleydale Celebration Choir and Orchestra

WHAT WILL THEY PLAY AT YOUR FUNERAL?
I Ran (So Far Away) - Flock of Seagulls

WHAT IS YOUR HOBBY/INTEREST?
What Child is This? Vince Guaraldi - Charlie Brown Christmas

WHAT IS YOUR BIGGEST SECRET?
More Than a Feeling - Boston

WHAT DO YOU THINK OF YOUR FRIENDS?
She's a Beauty - The Tubes

WHAT'S THE WORST THING THAT COULD HAPPEN?
Friends in Low Places - Garth Brooks

HOW WILL YOU DIE?
I Left Something Turned On at Home - Trace Adkins

WHAT IS THE ONE THING YOU REGRET?
The Ballad of Billy the Kid - Billy Joel

WHAT MAKES YOU LAUGH?
Jungle Love - The Time

WHAT MAKES YOU CRY?
How Great Thou Art - Elvis Presley

WILL YOU EVER GET MARRIED?
Can't Get Enough of Your Love, Baby - Barry White

WHAT SCARES YOU THE MOST?
Atomic Dog - George Clinton

DOES ANYONE LIKE YOU?
Homegrown Tomatoes - Guy Clark

IF YOU COULD GO BACK IN TIME, WHAT WOULD YOU CHANGE?
I Play Chicken With the Train - Cowboy Troy

WHAT HURTS RIGHT NOW?
Escape(The Pina Colada Song) - Rupert Holmes

WHAT WILL YOU POST THIS AS?
Penguin, James Penguin - Brad Paisley

All I want for Christmas...

2008-11-24T14:32:00.001-08:00

...is my 2 front teeth!

Yep, the Tooth Fairy is on her way to our house yet again! We don't know what happened to the tooth, and he doesn't care. This is his 4th lost tooth and only one of them we found. But Tooth Fairy understands and gives him credit for it anyway. Anyway, he lost it just in time - I may have to go download the Chipmunks version of '2 front teeth', just because it will annoy hubby to no end.

Well the good news on the stomach virus is that it has lasted just under 24 hrs for each of us. Lindsey got sick last night, and we had to throw away a teddy bear and her favorite pillow "Pilly". Yes, her pillow has a name and apparently is a girl pillow as Pilly is always referrred to as a 'she'. Anyway, we agreed that a new Pilly (this will be Pilly #3) will top her wish list. Let's hope Santa can handle that. It's a light up pillow - with an LED color changing light inside. Anyway, we are all feeling much better now...and we are praying that our recent guests will all be fine.

I was going to start Christmas decorating Sunday, but felt too bad to do anything - so hopefully we'll get started tonight or tomorrow. I found a crossing guard ornament, and a flamingo ornament to commemorate their Halloween costumes this year - so that's new, plus I got an 'arch' ornament from St Louis, but those are my only new decorations so far this year.

I think I'll go finish taking down the last of my scarecrows and other 'fall' themed decorations so I can start dragging out the other stuff.

An evening with Fragile friends

2008-11-23T09:21:00.000-08:00

So our local FX group gathered at our house last night. We had 4 families - 8 adults - 9 kids(all between the ages of 3 and 9) - 3 girls - all full mutation, and 6 boys, 4 with the full mutation. It is good to gather with friends who understand, though - friends who don't give you odd looks when you have to excuse yourself to change your 5 yr old's pull-ups. It was great fun... the kids trashed the playroom, but that's what playrooms are for right? I think in my desire to clean up earlier in the day, I stressed out Lindsey a bit too much, because she came downstairs crying because 'we worked so hard and now it's all ruined!' Note to self...next time don't bother cleaning the kids' rooms.
Anyway, the big issue of the moment is one of our local school systems has decided to end their preschool program. They had been widely praised for the program, which is comprised of 50% special needs and 50% typically developing kids. The excuse, as I understand it, is that there is a federal mandate requiring then to educate children in their natural environment (home or daycare), also they are saying that they are required to have a 70/30 preschool ratio by the federal mandate, which they don't have the space to do. But they are really just cutting costs. They refuse to offer my friend's 9 year old services, even though she has a fx diagnosis and she did miserably on her standardized testing. Also her 3 year old brother was not admitted to the preschool program because he was doing too well. They offered him 30 minutes a month of OT, and no speech. Seriously, has anybody ever heard of a 3 year old boy with FX who shouldn't have speech therapy? And the reason he is 'doing so well' is because his parents are shelling out a fortune to put him in a private program. So I guess they have to take him out, put him in regular daycare, and wait for him to lose ground before they will do anything for him? Yeah, not gonna happen.
Anyway... school system beauracracies can be such fun, eh? But we had a good time swapping stories and laughing together, and I am thankful beyond words for friends who 'get it'.
And now I have to call my wonderful friends and warn them because overnight I began feeling ill, and now it seems that hubby and I have a stomach virus. How much are they going to love us if we gave them a stomach virus for Thanksgiving? Yeah. Fabulous.
Anyway, I guess we have an explanation for the random hurling we experienced from J a few days ago. Still it was just that one time and then he was fine again, so I didn't suspect a stomach virus. Now I need a Band-aid for my tummy.

A Band-Aid for my tummy...

2008-11-18T16:40:00.001-08:00

J: I need a Band-Aid, Mommy
Me: do you have a boo-boo?
J: I need a Band-Aid for my tummy.

Cute, hmmm? No boo-boo on his tummy, and he's been playing and snacking all afternoon like normal, but big sis loves Band-Aids and is always looking for an excuse to get one, so I figure he's just imitating her, right? Nope.

Apparently, "I need a Band-Aid for my tummy" is code for "I'm about to hurl recycled mac and cheese and yogurt all over the carpet". Yeah. Thanks for the warning, son.

And now, he's running about chasing his sister and acting perfectly normal as if nothing happened.

Invisible mom

2008-11-18T15:24:00.000-08:00

I got this in an email the other day and I just loved it and wanted to post it for those of you who might not have read this one yet. :)

Invisible Mother.....

It all began to make sense, the blank stares, the lack of response, the way one of the kids will walk into the room while I'm on the phone and ask to be taken to the store. Inside I'm thinking, 'Can't you see I'm on the phone?' Obviously not; no one can see if I'm on the phone, or cooking, or sweeping the floor, or even standing on my head in the corner, because no one can see me at all. I'm invisible. The invisible Mom. Some days I am only a pair of hands, nothing more: Can you fix this ? Can you tie this? Can you open this??

Some days I'm not a pair of hands; I'm not even a human being. I'm a clock to ask, 'What time is it?' I'm a satellite guide to answer, 'What number is the Disney Channel?' I'm a car to order, 'Right around 5:30, please.'

I was certain that these were the hands that once held books and the eyes that studied history and the mind that graduated summa cum laude - but now they had disappeared into the peanut butter, never to be seen again. She's going, she's going, she's gone!?

One night, a group of us were having dinner, celebrating the return of a friend from England . Janice had just gotten back from a fabulous trip, and she was going on and on about the hotel she stayed in. I was sitting there, looking around at the others all put together so well. It was hard not to compare and feel sorry for myself. I was feeling pretty pathetic, when Janice turned to me with a beautifully wrapped package, and said, 'I brought you this.' It was a book on the great cathedrals of Europe . I wasn't exactly sure why she'd given it to me until I read her inscription: 'To Charlotte , with admiration for the greatness of what you are building when no one sees.'

In the days ahead I would read - no, devour - the book. And I would discover what would become for me, four life-changing truths, after which I could pattern my work: No one can say who built the great cathedrals- we have no record of their names. These builders gave their whole lives for a work they would never see finished. They made great sacrifices and expected no credit. The passion of their building was fueled by their faith that the eyes of God saw everything.

A legendary story in the book told of a rich man who came to visit the cathedral while it was being built, and he saw a workman carving a tiny bird on the inside of a beam. He was puzzled and asked the man, 'Why are you spending so much time carving that bird into a beam that will be covered by the roof, No one will ever see it. And the workman replied, 'Because God sees.'

I closed the book, feeling the missing piece fall into place. It was almost as if I heard God whispering to me, 'I see you, Charlotte. I see the sacrifices you make every day, even when no one around you does. No act of kindness you've done, no sequin you've sewn on, no cupcake you've baked, is too small for me to notice and smile over. You are building a great cathedral, but you can't see right now what it will become.

At times, my invisibility feels like an affliction. But it is not a disease that is erasing my life. It is the cure for the disease of my own self-centeredness. It is the antidote to my strong, stubborn pride.

I keep the right perspective when I see myself as a great builder. As one of the people who show up at a job that they will never see finished, to work on something that their name will never be on. The writer of the book went so far as to say that no cathedrals could ever be built in our lifetime because there are so few people willing to sacrifice to that degree.

When I really think about it, I don't want my son to tell the friend he's bringing home from college for Thanksgiving, 'My Mom gets up at 4 in the morning and bakes homemade pies, and then she hand bastes a turkey for three hours and presses all the linens for the table.' That would mean I'd built a shrine or a monument to myself. I just want him to want to come home. And then, if there is anything more to say to his friend, to add, 'You're gonna love it there.'

As mothers, we are building great cathedrals. We cannot be seen if we're doing it right. And one day, it is very possible that the world will marvel, not only at what we have built, but at the beauty that has been added to the world by the sacrifices of invisible women.

Great Job, MOM!

Halloween and other updates

2008-11-06T09:22:00.000-08:00

So here they are, my little flamingo and crossing guard. J is obsessed with the crossing guard at school and 'directs traffic' at the end of our driveway every day after school - so easy costume. Lindsey originally wanted to be Ariel (Little Mermaid) but she has been a Disney Princess every year for several years so I asked her to be a little more creative. So she wanted to be a flamingo. So 4 pink feather boas and a lot of hot glue went into this creation. She's Pinkalicious!

Yesterday I was trying out my new camera and chatting with the kids about the pumpkins we decorated to match their costumes, so here's my first youtube video. :)

http://www.youtube.com/watch?v=sJ5O4CbQHOM

Let's see what else...it is the season for birthdays for us, so in the past week and a half we've had my dad, hubby, sis-in-law, nephew, and then last is me. I always jokingly gripe because I never get my own cake - I always get leftovers because we are all tired of cake by this point. Yikes, it's been nothing but cake and Halloween candy for weeks it seems. I think I want a birthday pizza instead.

Catching up...

2008-10-01T21:28:00.000-07:00

Here I am again, wondering who I was kidding when I thought 'I should blog!' Grand intentions, no follow through - story of my life. Maybe I can blame it on fragile x? Nope...I think I'm just lazy. :)

So anyway, school is in full swing - Lindsey is in the 3rd grade and Justin is in kindergarten. Lindsey is falling behind a bit in both reading and math. We spent hours last night trying to explain the concept of rounding to her, but she just looks at us like we are speaking another language.

Here are a couple of '1st day of school' pics.

Lindsey loves being the big sis, so at the beginning of the school year there was always an aide there at the carpool line to assist in getting Justin to his class, but she's like 'no, I got it' and walks him to his class and helps him unpack his backpack and stuff. And so that continued, and somehow without us instructing her to do so, she just knew that she could gradually back off a bit each day. Now she just walks him to the kindergarten hallway and then watches him walk to his room. I'm so stinkin' proud. :)

Justin is quite the ladies man. Everybody wants to help Justin and sit by him. When I was there for lunch last week there were about 5 kids patting the seat next to them and calling to him to sit by them. The teacher tells me that when they go down stairs he gets nervous and says 'I can't do it' and one of the girls holds his hand and walks with him. Now he has no trouble with stairs anywhere else, but the little girls are cute, and I suspect he is enjoying the attention. Yesterday there was quite a drama over who would help Justin which ended with 2 girls crying and Justin grinning through the whole fight.

3rd grade boys, by the way, are really obnoxious. I was there for lunch again today, and the teachers in 3rd grade sit at the teacher's table in the center of the room rather than with the kids. One of the boys in Lindsey's class sat across from me and was using his plastic fork to fling small bits of bread up to the ceiling. I would have said something to him but I was more appalled by the boys at the next table who were apparently practicing for their frat party days. They were over there chanting 'chug! chug! chug!' while each other chugged their milk cartons. Good grief...where do they learn that? Anyway, it was just loud and obnoxious and I have FX too, so maybe I was just overstimulated...whatever. I'm not looking forward to lunch with 3rd graders again any time soon.

It sounded like a more like a crash...

2008-08-03T15:19:00.000-07:00

So we are back from St Louis, and I can now sit long enough to type for a few minutes...oh that's another story that involves carrying laundry down hardwood stairs and and what happens when a fleece blanket gets caught under your shoe. Suffice it to say that there is a horrifyingly large and purple bruise on my backside and my left elbow and shoulder are killing me. Anyway...lesson learned - don't do laundry. Yeah...that'll work right? Ah well, hubby did take pity on me and vacuum yesterday. Oh and when hubby asked Lindsey if she heard a big bump when I fell, she responded that 'it sounded more like a crash'. Yes, well then, perhaps you should have come running to help mommy instead of me having to cry and scream and beg for you to bring me a phone so I could call daddy before I passed out from the pain, eh?

Anyway, we had a lovely time in St Louis, met some new friends and reunited with old ones. We were encouraged to hear the latest research seems to be producing good results, but unfortunately the FDA process moves slower than we would like.
I'll be busy working on how to make picture schedules in the coming weeks, and school starts this Thursday!!! J's going to kindergarten and Lindsey's going to 3rd grade - I am both excited and terrified! Lots of big changes this year and we've got a lot to think about and plan, but I think it's gonna be a good year. :)

Ok, I'm gonna go ice my butt again...lol.

Meet me in St Louis!

2008-07-09T16:43:00.000-07:00

So we are 2 weeks out from conference and I'm getting excited! Ah, so much to do and plan and pack! Justin is going to my parents house and Lindsey is going to the in-laws. She'll stay some with grandma and some with her aunt, uncle and cousin. They are both much easier to handle separately where they can't fight with each other, so we will split them up. Pray for my parents especially as they live on a lake and J's favorite thing is to go throw acorns and rocks into the water. He doesn't swim so they can't let go of his hand near the water and that's where he wants to be all the time. So that makes me a bit nervous.

I'm thrilled to meet up again with folks we met 2 yrs ago and looking forward to learning more about the latest research news. Should be a great time!

FX in Time Magazine

2008-07-09T16:42:00.000-07:00

http://www.time.com/time/magazine/article/0,9171,1818268,00.html
Woo! It's a 3 page article in the print edition of the magazine - there's actually a bit more in the print version than online. It's a really nice profile of a family affected in 3 generations. The boy who has cognitive impairment, the mom who is a carrier and is in the early stages of FX associated premature menopause, and the grandfather who has fragile X associated tremor ataxia syndrome(FXTAS). I'm excited to see it features so prominently in a major news magazine - I'm tired of hearing 'fragile what?' when I mention it.

Clearly I am terrible at blogging

2008-03-07T15:58:00.000-08:00

Could it be because every time I sit down at my computer, J is in my lap screaming "I wanna be the HEEEEROOOOOOOOOOOOO!!!" ? Yes, well, he loves Veggietales, and I sat here with him one day looking at Veggie silly songs on YouTube, and he fell in LOVE with the SUV song. If you haven't had the pleasure of hearing this song 8 million times, as I have - go Google 'YouTube SUV Song'. Just be warned - don't do it with a little person around who might become addicted to it, or you will lose your computer forever. Gotta go...he elbowing me out of the way now, he's gotta be a hero. :)

New perspective

2008-01-25T09:08:00.000-08:00

This past Friday night a fellow church member and local radio personality, Rick Burgess, lost his son in a tragic drowning accident. William Bronner Burgess, affectionately known as Cornbread, was 2 1/2 years old.
http://www.youtube.com/watch?v=heHQkmCOYaU

Rick spoke at the memorial celebration. More accurately, God spoke through Rick. I am so thankful for his words, because I've been given a new perspective. An eternal perspective. I would encourage anybody reading this to take a few minutes and go hear this. His message is available in 3 parts on Youtube -if the links here don't work, search for Rick Burgess, a Father's Heart.
http://www.youtube.com/watch?v=5PUHUZWyFeg

http://www.youtube.com/watch?v=B7aNDixS2J0

http://www.youtube.com/watch?v=DUT8Bk6Ou90

I am heartbroken for this family in the loss of this beautiful baby boy, but I praise God for the lives changed through this. I know I am changed. Our son's issues will continue to be a challenge, but now I have the eternal perspective that these issues are only for this life. I am reminded of the things that matter in eternity, and most of the things I fret about in my daily life mean nothing beyond this life, just a blip on the timeline, and I am grateful for that reminder.

John 14
1"Do not let your hearts be troubled. Trust in God; trust also in me. 2In my Father's house are many rooms; if it were not so, I would have told you. I am going there to prepare a place for you. 3And if I go and prepare a place for you, I will come back and take you to be with me that you also may be where I am. 4You know the way to the place where I am going."

5Thomas said to him, "Lord, we don't know where you are going, so how can we know the way?"
6Jesus answered, "I am the way and the truth and the life. No one comes to the Father except through me. 7If you really knew me, you would know my Father as well. From now on, you do know him and have seen him."

2007-12-22T08:21:00.000-08:00

J's class made graham cracker 'gingerbread' houses Wednesday. We had fun and ate lots of m&m's. :)

We are on the final countdown to Christmas now, and praying we can get them both healthy at the same time. A week or 2 ago it was Justin and his ear infection, for which he refused to take his antibiotics, but miraculously it cleared up on his own. Tuesday we were at the pediatrician with Lindsey having bronchitis, but J checked out perfectly. Tuesday night he started coughing. Thursday night I kept checking to see if his lung was on the carpet. Thankfully he didn't actually cough it up, but it certainly sounded like it. Friday back at the pediatrician - Lindsey sounds good, Justin's full of green goo. Thankfully the ped didn't bother to write a prescription since J won't take it. He just gave him a shot of antibiotics and a shot of cortisone. That should clear him up, we hope. He seems a bit better today.

Oh, and my best Christmas present this year - good news for all of us in the FX world. They are beginning testing on 2 promising new drugs! If you haven't read about this - go to Time magazine and search fragile X - or just Google a bit and you'll find it - or let me know, and I can post the articles here. Anyway, I've already made my wish list for next year - good test results and approval for the drugs, so we can try them. :)

Anyway...I'm off to finalize my grocery list for Christmas Eve dinner and finish wrapping stuff. If I don't post again prior to Christmas - or even if I do - I wish all of you a very Merry Christmas.

Isaiah 9:6 (KJV)
For unto us a child is born, unto us a son is given: and the government shall be upon his shoulder: and his name shall be called Wonderful, Counsellor, The mighty God, The everlasting Father, The Prince of Peace.

The Elf on our Shelf

2007-12-07T18:43:00.001-08:00

My mom sent this for the kids today. He comes with a book that tells all about him. We named our elf Ollie and sat him on the shelf. He watches over the children and every night he flies home to Santa and updates him on what's going on. The next morning he reappears in a new spot in the house and the kids have to look for him. :) I think they are really going to enjoy Ollie. We went online and registered our elf and got a note back from Santa and an Official Certificate of Elf Adoption. I had fun tonight looking around and thinking of all of the places where Ollie might appear...

www.ElfonTheShelf.com

"What's shakin' mommy?"

2007-12-06T08:43:00.000-08:00

So Justin walks in the kitchen yesterday and says, "What's shakin', mommy, what's shakin'?"
LOL Where on earth did he learn that one? What a funny boy he is.

Unfortunately the biggest thing 'shakin' is my booty. I desperately need treadmill time, I'm feeling so unhealthy. I've been fighting bronchitis for about 2 weeks now and every time I get up and try to do anything I start coughing again and it's just miserable. I've got to get over this so I can start exercising.

Rambling here...but do you ever feel like whatever you say, it's wrong? Yeah, that's me lately. I'm frustrated with myself for not being able to get my point out without stepping on toes. I'm cranky and it seems a lot of people around me are as well.

Oh forgot to update- Thanksgiving went really well. Everyone said my turkey was moist and yummy. I followed Alton Brown's instructions from the 'Good Eats' Thanksgiving special:Romancing the Bird. I brined him the night before in vegetable stock and some spices, and cooked him on 500 for 30 minutes, then covered him with foil and cooked at 350 until my thermometer hit 165.
The bonus for having it here - I got to eat leftovers for days and they were yummmmmy. :)

We have a winner!

2007-12-02T12:29:00.000-08:00

Well we just went through the annual tradition of dressing up the kids in their Christmas outfits, pleading with them to behave and not kill each other, and taking a thousand pics in hopes of one that is presentable for our Christmas card, and I do believe we have a winner.

Of course the fighting that went on before and after the picture are another story altogether, but we'll just go with this one - they are pretty darn cute huh?

Aaargh

2007-11-29T04:58:00.000-08:00

Every day since the beginning of school we have the same meltdown. Justin screams 'I wanna ride in daddy's car' and I wrestle him into the car while he fights, kicks, and slaps me. Daddy drives Lindsey to school because itt's on his way to work. Justin's school is in the opposite direction so I drive him. We tried switching cars - that doesn't help either - he just wants daddy, and daddy doesn't have time to go that far out of his way. You would think after 4 months of school he would get that no amount of tantrum is going to change the plan, but nope.
Anyway, once I get him in the car and start driving he screams. And he doesn't stop till we get there. He also pulls off his socks and shoes and throws them. Sometimes they hit me, sometimes they land way in the back. So I would get to school and then have to search the van for his socks and shoes in the carpool line. So I quit attempting to put shoes on him at home. Now I take his socks and shoes and put them in the floorboard out of his reach and he rides barefoot to school and we put shoes on when we get there. He's fine once we're there. One morning a few weeks ago I got to the carpool line and not only was he barefoot but Houdini had also removed his shirt - while in a 5 point harness.
So anyway yesterday was like the rest, meltdown, kicking, hitting, etc but now I also have bronchitis and I'm so not feeling up to dealing with this, but I wrestle him into the car and we ride to school. We get there and I turn around and look for the shoes and I don't see them. "Justin, where are your shoes?" - "at home". Ok, totally my fault for failing to get them, but that little turkey knew his shoes weren't in the car, and he let me drive all the way there. So, 15 minute drive home and he cries while I get his shoes, because he wants out of his carseat and wants to come in and then we drive back to school - again. Little turkey.

Now that I've had my daily panic attack...

2007-11-13T10:59:00.000-08:00

So I was talking to my dad about Thanksgiving and stuff and while we were talking I could hear Zoey picking at the rug in my bedroom, so after we hung up, I went to investigate. This is what I found. I know some people think they are cute, but I have a standing rule of 'no rodents, no reptiles' in my house, and this was a flippin' reptile loose in my bedroom so I am beyond freaked out. I called hubby and he laughed while I ranted about the reptile. After Zoey finally moved it to the hardwood floor, I swept it out the front door, but not before she bit off it's tail and left it on the rug for a present. Still, for a 12 year old cat who has lived indoors all her life, she's apparently a decent hunter, so I'm proud of her for that at least.

Countdown to Turkey Time - 11 days

2007-11-11T13:03:00.000-08:00

Well, since we have the new house, we volunteered to host Thanksgiving this year. What was I thinking? I can't even handle a raw chicken breast without feeling nauseated and now I have to pull the innards out of a turkey? Ewwwwwww. I'm playing the FX "I have sensory issues" card and making hubby deal with that part. Ewwww, ewwww, ick.
So, anyway I'm currently glued to the Food network watching everything possible about how to cook a turkey and make gravy, which I also don't know how to do. I'm planning to brine the turkey - sounds good anyway. Good grief, I just hope I don't start a fire or give the whole family food poisoning.

Sigh, I really should be cleaning or even unpacking, but I'm just so unmotivated. Blah.

pictures

2007-11-09T08:00:00.000-08:00

It's been a while and I need to update the pictures so here are afew recent ones. This one is one of my favorites, because it captures my kids so well. The pink shiny boots don't match and she doesn't care - they are pink and shiny and she loves them and would wear them with everything if mom let her do it. And Justin who has a 50/50 chance every time to get his shoes on the right foot and but seems to always get them wrong and walks quite happily with his shoes on the wrong feet, which makes mom a little crazy...

They had fun. My parents came over to pass out candy while we took the kids around the neighborhood. We had over 350 kids - it was crazy and fun.

AWOL

2007-11-09T07:43:00.000-08:00

Oops, sorry it's been a while hasn't it? Well since my last post we've sold our house and moved into the new one, and it's been keeping me a bit busy. We still really need rugs and art for the walls and I still have a LOT of boxes to deal with. And I volunteered to host Thanksgiving this year, and I've never cooked a turkey before, so I'm nervous. There will be somewhere between 13 and 17 people here, so it should be a fun day. :)

Justin is acutally sleeping better now. I guess giving up the nap worked, but he's a really cranky little bear in the afternoons. I finally got our ped to prescribe the med changes suggested by Dr H on our trip to the MIND Institute. The pharmacy had to order them, so I'll go pick them up today and we'll see how that goes.

I'm feeling desperately disorganized and scattered and pulled in too many directions right now with preparing for Thanksgiving and Christmas, stuff happening at school, trying to unpack, and of course deal with the constant mood swings of my 4 yr old Jekyll/Hyde boy. I find that getting time for me - to exercise, read my Bible, or just have a minute to myself - is just not happening. Of course, I've always been really good at putting me last on the list anyway. I've had some spa gift certificates for over a year now - I just can't seem to fit in a mani/pedi - how wrong is that?

So anyway, I really need to work on my time management and do things a bit better. Otherwise, life is pretty good right now. I'll try to make some time to post more often. :)

Home Sweet Home

2007-09-04T15:41:00.001-07:00

We had a great trip, but it's always good to get home. 8 days in a hotel room with the kids - it's kinda tight quarters and we only had a few small toys so we were all a bit bonkers and ready to get back to normal life - well, as close to 'normal' as life ever gets for us, anyway.

Let's see, we spent 4 days at the MIND Institute. I feel like I answered a million questions at least. We had lots of parent interviews by various people. The kids and I all had IQ testing and medical histories taken among other things. Oh we also had blood draws - yikes. Mine was easy, but Lindsey was so pitiful, and Justin had to be strapped to a board - his was the worst, but he recovered much quicker than Lindsey, who I'm afraid still holds a grudge.

Lindsey also did a research study related to anxiety and Justin had speech and OT evaluations. We got lots of suggestions for med changes and IEP changes from Dr Hagerman, so we'll start working through those soon. I feel like I learned a lot, and really enjoyed meeting everyone there at MIND. We met another family from Birmingham with an adorable little 20 month old boy, who I got to keep an eye on for a while while his parents were in parent interviews. We also met a family from Dallas with 3 boys, who were staying at our same hotel, so we saw them a lot also. Everybody we met was very nice and it was just good to talk to people who totally understand.

Oh, we got pictures of the kids with Louise Gane(genetic counselor) and all of us with Dr Hagerman.

We spent Friday taking a day trip to San Francisco. None of us had ever been there before, but Justin can only take so much in a day, so it was a whirlwind tour. It was a gorgeous, sunny windy, cool day - maybe 65-70 degrees, which was amazing after being in Sac all week with temps over 100. The Bay Bridge was closed so we drove south and crossed over the San Mateo Bridge. We went to Hyde and Lombard and saw a cable car and walked down the steps a bit there(this is that really famous curvy road in SF) took lots of pics and then drove down it - twice.

We went to the Fisherman's Wharf area and walked around Ghirardelli Square, had lunch there at Lori's diner outside overlooking the bay.

We walked down along the street a bit and down to the little beach area right there. Then we came back and had hot fudge sundae's from Ghirardelli's. Justin got a toy cable car and I got a cable car Christmas ornament. We left and drove through Chinatown, and then across the Golden Gate Bridge. We stopped on the far side at a scenic overlook and took lots more pics and then walked partway back across the bridge. It was very windy up there, but the kids loved it.

Then we drove back to Sac and collapsed for the night. If we had it to do over again, we would have left our hotel in Sac and stayed closer to SF for Fri and Sat nights as the weather was so much better and there was lots to see and do there. As it was, we went Saturday to Old Sac - they were having Gold Rush Days, and it was really great - felt like we were back in an old Western movie, but miserably hot, so we all were done after only a few hours there. We did take the train ride. Justin got a cowboy hat, Lindsey got a t-shirt, they both loved the pony rides.

Justin wasn't too crazy about the cannon they kept firing. Oh and after we left, we drove to Rancho Cordova just to see a different part of town and we went to an In'N'Out Burger - don't have those back home - it was yummy!

The flights were the hardest part. Bhm to Dallas (90 min) Dallas to Sac (3 1/2 hrs), and then Sac to Houston(almost 4 hrs) and Houston to Bhm(90 min). Justin insisted on squealing, fussing, and kicking the seat in front of him and on our 2 longest flights the person in front of him was not understanding at all. The dvd player held his attention for maybe 5 minutes, so the flights were beyond draining. J and I did get bulkhead seats for our first short flight, but that was the only one.

Long time - no blog

2007-08-23T20:23:00.000-07:00

Oh, it's been a while since I've posted anything. Well, I've been more sleep deprived than usual. Justin had bronchitis for about 3 weeks. He's just getting over it. He's normally not a good sleeper, but try coughing every time you lay down and see what that does for you. Now I've got it too, and he wants to sleep with me, so I cough and wake him up, he coughs and wakes me up, we've just not been sleeping much. Yesterday he fell asleep at school and slept through speech therapy. He's got an extremely sensitive gag reflex and anytime we try to give him medication he empties his stomach. Not fun. So we went to the doc twice and got antibiotic shots both times and a steroid shot once.
We now own 2 houses. We are slowly moving a few things into the new house. The cats were the first to go, so at least the house we are trying to sell doesn't smell like kitty litter - yuck. So they are adjusting to the new place and we go visit every day and take a few more toys and stuff each time. I need a buyer so I can get this over with.
School has started - that helps a lot. I can get a nap occasionally. :) Lindsey is in the 2nd grade now and Justin is in pre-K. She has discovered Webkinz, so we have a new obsession. Justin still wants to watch the movie Cars every waking moment.
And we leave Sunday for Sacramento for our long awaited trip to the MIND Institute at UC Davis and Dr Hagerman, who probably knows more about FX than anybody. We are beyond excitied about it, and we just learned also that another family from our area will be there at the same time, so that's really super too - we are excited to meet them.
That's all the news I can think of...we've been a bit busy. I'm sure I'll have a ton to post after we get back. We fly out this Sunday and return the following Sunday, so say a prayer that Justin doesn't scream the whole way - lol.

Recent pics - just because they make me smile.

2007-08-01T11:22:00.000-07:00

Justin was playing - driving his car on the piano...and SuperLindsey decided to try on J's Halloween costume from last year.

FX Awareness Day fun

2007-07-22T17:37:00.000-07:00

We had a really good day today at the zoo. Our friends Matt & Beth organized the event and we had people from all over Alabama as well as Mississippi and Atlanta. A lot of people there weren't in the picture. My family is right in the center(if you click on the pic you can see it larger - not that I need to be any larger, but that's another story, I suppose). I'm on the ground holding one end of the sign, and right behind me are Justin, Lindsey, and Tim, along with my brother, Scott.

We had ice cream and the kids colored and played together and the parents got a chance to just chat with others and meet new people dealing with the same issues, which was really nice. The t-shirts sat 'got fragile X?' on the front, and the back says '1 in 250 women and 1 in 750 men carry the gene that causes Fragile X Syndrome - find out more at fragilex.org'. We wore them all over the zoo and out to eat today, so at least a few people likely took note and maybe will look it up, learn more etc. We also had some great volunteers, one in research preparing to do some work on FX, one who works bringing community artists together with people with disabilites to provide art opportunities for them, a special needs teacher...they were all fantastic to come help us out.

The zoo has a water play area near where our meeting room was are the kids had fun there too.

2007-07-12T19:18:00.000-07:00

Ugh...the process of selling a house - bleah. Anyway...it's been about 2 weeks -we've had maybe 12 showings, a few express serious interest, so we wait and see...

Mom is feeling better - not in pain so much now, but still pretty much stuck with the wheelchair for 5 more weeks. She can put no weight on the broken leg, and the other foot(with the toe surgery) she can't get into a shoe and the boot they have her wearing doesn't give her enough stabilty to use crutches. But she's in good spirits and each day is a bit better than the prior I think.

The kids were in the basement playing earlier and Justin came up with bright red marker all over the BACK of his new white shirt. And Lindsey had the nerve to look and me and claim that Justin drew on his own back! With a straight face. How dumb does she think her mommy is? She was so serious and so appalled that I would think she did it...oh, I'mm gonna have to watch this one.

I smell like Windex and play-doh

2007-07-07T21:45:00.000-07:00

We have an open house tomorrow - I'm tired of cleaning, so somebody buy my house so I can be a slob again. ;) I did take a little break to make play-doh flowers with Lindsey - that was fun. Of course then I had to vacuum up all the little bits of play-doh that always seem to dot the floor afterwards. *sigh*

Mom is doing a little better each day. Not so much pain now - she is off the prescription pain meds and down to regular tylenol so that is good. They are going next week while they have a post-op follow up also to her regular doc for some bloodwork to check her sugar levels to see if that is what caused her to pass out. She still basically can't put weight on either foot, so she has been pretty much confined to the recliner all week. That's certainly been a challenge as you can imagine, but the silver lining is that my dad is learning to do laundry for the first time in his life. :) I'm proud of him.

Better get to bed now...Justin is already restless and we had a long night last night waking many times and I've got to get a little sleep while I can so I can get up and finish cleaning in the morning. Oh, yay...more Windex. pfffffffffffft

Updat on my mom & more from my little vandal

2007-07-03T11:01:00.000-07:00

Mom had her surgery this morning - all went well. She's in recovery, but the are having trouble getting her pain under control. The demoral isn't enough so they just gave her a couple Loritabs. Dad is driving her home later and is planning to see if he can get someone from fire rescue to come help get her up the steps into the house. The doc says she will not be able to bear any weight on that leg for for 4 weeks. Ther other foot (with the toe surgery) she can bear some weight on, but between that and the pain meds it will be a while before she can be steady on that one foot and learn to use crutches. They are going to have to get a wheelchair for her. Yesterday he was wheeling her around in his desk chair.

On a lighter note...

The blue nail polish from yesterday had me reflecting on earlier graffiti art created by my little hoodlum. And here are a few examples - the back of my dining room chair - that's Sharpie marker by the way. That's probably been 3-4 yrs ago and a sweater still hangs over the chair.

This was some art she drew on my bedroom walls, nightstand, lamp, and herself of course, along with her mugshot in front of the crime scene. I think she was 2 at the time.

My brain's too fried to think of a title...

2007-07-02T15:20:00.000-07:00

This past Friday my mom had some minor surgery to correct a problem with a toe on her right foot. So she is hobbling around with a boot on her foot unable to bear much weight on it. This morning she woke up feeling lightheaded and in a good bit of pain, so she took some pain meds - on an empty stomach. So apparently she passed out, hit her head, and fell, in the process somewhere breaking her leg. Now they live about an hour away in a small town. Once my dad finally got her to let him call 911, the ambulance took them to the local hospital which did x-rays but they don't have an orthopedic doctor there, so they put her in the car and my dad drove her to Birmingham. Finally got an ortho who says she needs surgery, a plate and some pins. There are 2 bones there between the knee and the ankle and the smaller one(fibula, I think) is shattered and the larger is out of place somehow, and she has a torn ligament in her ankle. They have just sent them back home(an hour drive) with instructions to come back for outpatient surgery tomorrow. Dad's got some neighbors who can help carry her into the house, but they have 4 or 5 stairs at every entrance so it's not very wheelchair accesible and she can't bear weight on either foot...ugh.

So I get off the phone a few minutes ago with my dad, and decide to go see what damage my kids have done while I've been on the phone. I go into the bathroom where Lindsey is and I smell nail polish. And I see that she has painted Justin's toy car(Sally from the movie Cars, the blue porsche) with her sparkly blue nail polish. Well I lecture her about using nail polish without permission and defacing her brothers toy, and she quietly apologises and slips out of the room while I get out the polish remover and take as much of it off as I can. So then I go looking for Justin and he's in the kitchen eating a banana, but he got his back to me. And then he turns around and this is what I see:

Yep, she painted her brother blue. I had to keep my back to her and tell her to go to time out because I wanted to yell and laugh at the same time.

I had a date last night!

2007-06-30T21:18:00.000-07:00

Our church had a parents' night out for parents of special needs kids last night. They had pizza for the kids and they got to play games, go to the playground, watch movies...they had a great time. And hubby and I went to a real grown up restaurant with no children's menus or crayons, and had a nice relaxed dinner and never once had to tell the kids to stop kicking each other or worry about when the meltdown would start. It was heavenly. What a wonderful thing it was for them to do for us. I love my church family!

Oh and we had our first showing on our house today. It went well I think. Our agent said they want to look at it again. Also our next door neigbor said his wife's sister is looking for a house in the area(his brother lives next door to them on the other side), so that's a possibility. I'll be sad a little, this is where J has always lived and the only house Lindsey remembers, so it's a bit emotional...but I'm ready for a change.

Recent FX news

2007-06-28T06:04:00.000-07:00

For those who may have missed the recent news - pretty cool stuff!

Scientists eye an enzyme as target in fighting autism - Yahoo! Newshttp://news.yahoo.com/s/afp/20070627/hl_afp/ushealthautism

and a well written blog by a retired MD discussing the recent news :
http://www.bloggernews.net/18175
The X files: Autism’s fragile X syndrome

***************

And tragically, it seems the Chris Benoit story has a link to FX as well. His 7 year old son, Daniel had FX. Our prayers are with that family.
Katie Clapp, founder and President of Fraxa(the FX research foundation) will appear on Inside Edition tonight to talk about Fragile X.

How sad that this is what it takes to get the attention of the media. Of course, we have to take the opportunity to get the word out and hopefully be able to help others with FX. We may never know if or how FX played into this tragedy, but we do know that having a child with special needs does create extra stress in many families. So we must continue to raise awareness and raise funds for research to find a viable treatment, and in the meantime, we just take it a day at a time and love our kids, and do the best we can.

Awesome story related to all this and a profile on the Heyman family:
http://abcnews.go.com/Health/story?id=3327269&page=1

Much love - L

Looks like it's gonna happen

2007-06-25T06:13:00.000-07:00

So the house inspection went well, and we just spent the weekend trying to make our house presentable to try to sell it. I don't know how am I going to manage this with my little tornados (if you are ever looking for my kids, just follow the path of destruction).

I told Lindsey every toy she leaves out gets packed up and she'll see it again when we get to the new house.

So anyway - here's my favorite room in the new house - the screened back porch w/ ceiling fan so I can sit there in the shade and read a book and see the kids playing in the fenced backyard. I wish the furniture came with it...I need to go shopping for patio furniture soon before they sell it all - a lot of places will have it on clearance in the next few weeks I think.

Tickled pink...

2007-06-16T21:18:00.000-07:00

We went back today for a 2nd look at that house - That bathroom is severely pink! That is not a color I would ever agree to paint a room, but she likes it - lol.

4am...sleep? who needs sleep?

2007-06-15T08:38:00.000-07:00

Seriously - 4am. That's what time Justin woke up yesterday and today - 4:00 on the dot. His little secret internal alarm goes off and he's done sleeping and done allowing me to sleep. He cries, yells, pulls the covers off of me and pokes me until I get up with him. And then he wants to watch "Cars" for the 4000th time.
I don't know what's up with the boy, but lately he seems to love being awake in the middle of the night. And he can't just play quietly, he either has to have a raging tantrum or watch 'Cars' - and I have to watch it with him. I'm averaging maybe 4 hrs of sleep over the last month and I'm worn to a frazzle. Still he's cute as pie and just when I'm at the end of my rope, he brings me back with a hug and a kiss and all the cuteness that is Justin.

On another subject entirely, we are still house hunting. We've also been talking about building a house and are working on the floor plan with the architect. But, a house came up for sale this week that we like a lot. It's bigger than we need, but it's really pretty. And it has a hot pink bathroom for Lindsey. Think of a flourescent hot pink highlighter - that's the color of the bathroom. Gives me a headache to look at it, but she would L-O-V-E it. We will probably go look at it again tomorrow with the kids.

2007-05-19T09:12:00.000-07:00

Yay! We had dinner last night with friends who live here in town who also have kids with FX. We are helping them with planning an event here at the zoo for FX awareness day in July and I'm so excited about it! I'm looking forward to meeting more FX families from around the state. It really helps to talk to others who understand and know what you are going through.

It's gonna be a fun day!

Oh, and a quick funny about my little guy - apparently he doesn't like my cooking - not that I blame him...anyway, every night about dinner time he starts saying "eshturant food", so last night he starts again and I say "yes we are going to get some restaurant food" and he grabs my face, kisses it, and then proceeds to pound his chest like a little gorilla. Seriously, my cooking isn't that bad, is it? Ok, maybe it is...

I'm 4 years old and I'm so cute!

2007-05-13T21:33:00.000-07:00

Seriously, could he be any cuter???? I know, I'm biased and blah, blah, whatever...but c'mon, he really is just stinkin' adorable right? You know it, I know it, and I promise you he knows it!

And he uses it to make me forget about all the times I'm at the end of my patience with him.

Like the other night when he was up crying and fussing and wanting to be rocked, and wanting juice, and several rounds of fresh pull-ups till 4:30am! We finally both passed out in our(me and daddy's) bed somewhere areound 4:30. Oh but wait there's more...6:30am I wake up in a wet bed! Oh yes that's right...the little stink kept me up all night and then had the nerve to pee in my bed! Hubby's side was nice and dry, just my side he peed on. Aaargh....and then he has to go and kiss me and be sweet so I can't even get really mad...but still...grrrrr.......

2007-05-13T09:31:00.000-07:00

Dear Fragile X Friends and Families,

Doris Buffett, president and founder of the Sunshine Lady Foundation, has donated $500,000 to FRAXA and challenged FRAXA to raise an additional $500,000 in new money by November 1, 2007. If we succeed in raising $500,000, Ms. Buffett’s foundation will match that, netting FRAXA a total of $1.5 million in new money for research!

It will be a race to the finish line, but with your help, FRAXA will have an additional $1.5 million that will go directly to research aimed at finding effective treatments and a cure for Fragile X, the leading inherited cause of mental impairment and autism.

The outlook for those affected by Fragile X is brighter than it has ever been. FRAXA’s research has identified the pathways in the brain affected by the loss of FMRP, the Fragile X protein. Our research teams have tested specific compounds in animal models of Fragile X, and the results have been remarkable. We now have several therapeutic strategies that have been proven effective in preclinical testing.

We have finally moved from identifying the problem to demonstrating that we can fix it.

In 2000, Dr. Kim Huber, a FRAXA Postdoctoral Fellow in the Brown University laboratory of Dr. Mark Bear, discovered that in Fragile X mice brains there is too much of a good thing – an excessive form of learning called Long Term Depression (LTD). Remarkably, this LTD is regulated by one class of receptor: mGluRs. Drugs (called mGluR5 antagonists) are being developed which can specifically block these receptors.

FRAXA has devoted much of its resources in the past six years to arrive at this breakthrough. We are now on the verge of the first specific treatment for Fragile X – a treatment likely to be effective for a wide range of autism spectrum disorders as well.

As we move into human trials, everything gets much more expensive. Our goal is close; the financial requirements are huge. We are working together with outstanding small pharmaceutical companies, but their resources are also limited.

Money is required every step of the way, and now we can double the dollars we raise!

We are counting on you to help deliver these treatments and a cure. Remember, every new dollar raised will be doubled by Doris Buffett’s Sunshine Lady Foundation, and our vital research will be accelerated!

Please help us raise $500,000 by November 1, 2007. Send your check in the enclosed envelope, donate online at www.fraxa.org, or call us to get a supply of envelopes and letters for your friends. Help us meet Doris Buffett’s Sunshine Lady Foundation Challenge.

Happy 4th Birthday Justin!

2007-05-08T14:08:00.000-07:00

4 years, oh my gosh, how is that possible? My little buddy is growing up! A picture for each of his birthdays...will update with a new one for this year soon!

How can you get mad when he's so dang cute?

2007-05-05T07:46:00.000-07:00

So when Justin is really trying my patience, I have a habit of telling him, "son, you are CRAZY!"

Anyway, the other day I was here surfing the net(imagine that!) and he comes to get me saying something about 'messy' and leads me to the bathroom, where he has unrolled an entire roll of toilet paper and torn it to shreds and spread it all over the bathroom. It looked like a mummy exploded. So I turn around with my sternest expression on my face, and he looks up with his big blue eyes and says, "Mommy, I CWAZY!" and he giggles. And I burst into giggles too.

What a funny boy. :-)

Fragile what?

2007-05-03T12:44:00.000-07:00

I am still amazed that I lived 30+ yrs before I ever heard of Fragile X. My brother and I both have the full mutation, and my mom is a carrier. Scott is severely affected, and mom and I both struggle with the shyness and anxiety that are common in female carriers of FX.
The first time I read about it,(when they were testing my son for it) I knew it was our answer. It explained so much in our family - described Scott perfectly, as well as the shyness in my mom and I, the flat feet, ear infections, and the early menopause my mom experienced. Why had we never heard of it?
Why have so many people never heard of it? Even doctors, when I mention it to them, don't know what it is. It is the most common inherited cause of cognitive impairment, and the most common known cause of autism. 1 in 200-300(the number varies depending on who you talk to) women are carriers. When will the day come when we don't get the response "fragile what?'

*sigh*

Holland

2007-03-29T16:12:00.000-07:00

So here I am in Holland. I still sometimes close my eyes and picture myself in Italy. My son received his diagnosis Dec 04. Fragile X syndrome (FXS) is the most common cause of inherited mental impairment. This impairment can range from learning disabilities to more severe cognitive or intellectual disabilities. (Sometimes referred to as mental retardation.) FXS is the most common known cause of autism or "autistic-like" behaviors. Symptoms also can include characteristic physical and behavioral features and delays in speech and language development.

My world changed dramatically that day. He won't outgrow this as we had hoped. He will continue to fall more and more behind his peers. The picture painted that first day was not pretty. Today there is a glimmer of hope in some new meds soon beginning human trials, but still we are afraid to get our hopes too high. He is now approaching 4 yrs old. The younger he is when a real treatment is found the more it will benefit him. We just wait, hope, and pray that it will be soon.