Sunday, September 28, 2008

Mach 3

Mach 3 is the speed from Back To School until Halloween! And also the speed of growth that Aubrey Jo is having! EVERYONE SLOW DOWNNNNNNNNN! (yep, still can't decide on halloween costumes...if i wait any longer, i won't be able to get the one we want....decisions, decisions)

Aubrey Jo is spending the weekend with us (napping now or i couldn't post up). I think the kids' college-papers-due were stacking up. I don't know HOW Gabe and Ally do it, cuz i haven't showered, the house is a mess, and supper was way late last night! Aubrey doesn't like to be "stuck" anywhere now, she insists on being up and on her legs with a full 360 view!

I do get a break when the Cards are playing!

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And of course EVERYONE has to get in on the action with her! Jager feels his job is to make sure her head stays sparkling clean! She thinks the dogs are hysterical!

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She also has moved from a floopy little thing, to miss stiffie! Gayla? Gabe said to post this one for you...her newest trick:


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He's pretty excited about it, as we could never do this with Molly!! We are all agog with that mach3 speed of devolopement in a typical child, although she has still not bypassed the size of the big, ugly baby!!


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Miss Molly helps with all the chores! Sometimes by just giving me a more to do...no, I am not diapering BUB!

Mach speed is also the speed at which she coos, laughs, plays with the puppies....and then ZONKS! Too much entertainment proves itself in narcoleptic action!



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We're all wanting to be snuggle bunny... due to cooler weather and september stress.

My tummy was so tore up on Thursday I had to take a powder (ulcer? not viral for sure), and Molly seems more subdued this weekend. Sometimes just getting through the week is tough on all of us, adult or child. I forget she has her own issues at school, and they are just as important to her,as the grown up issues are to me. We both distract by watching movies, and hiding under the covers.

Her Stressors?

They are unknown to me. I know they exist, and can compensate for some..*the power just blinked and the "Little Bear" she was watching while snuggled turned off...the GROAAAAAAAAAAAN that came from my bedroom registered on the richter scale!*

That one is an easy fix...but the others? The ones that cause her so much grief in the morning she feels the need to throw her shoes at her teacher? I can't read them. But they are there. Does something happen on the bus? What causes a child happy and excited leaving home...to be grumpy and noncompliant for her first classes? Moms of kids with Special Needs have many worries, and alot of FAITH in her teachers.

My stressors? Much easier to put into words.

1) Not knowing how to fix her stressors. Being unable to bridge the communication to a level of REALLY COMPREHENDING what is going on in that pretty little head.THAT is the most frustrating thing.

2) We're still waiting on the MRI results for Larry, should talk to the doctor sometime this week. Either answer we get is not good.

3) New management at the store and not knowing where I fit in, I'm watching others and know they're feeling the same way. And as always in retail, wondering why regular people can be so evil when they think no one is looking!

4) WILD BLUE HI-SPEED!! When it works, it's like 1/4 of what DSL is...I am currently on "dial up time-out" again because we blew our "alotted" bandwidth. The sarge does his ancestry, and i upload pics. Neither of us is outrageous with our work, but $70.00/month does not cover it! CENTURY-TEL PHONE COMPANY! FFS...get us the DSL! THIS is one frustrating expense i would rather do without!! Which brings us to.....

5) Finances....are yall feeling this? $5.00/gal for milk,gas OR a 10 bag of potatoes! My $100 trip to the store now $200.00, and the $30.00 tank of gas is ranging from $60-$100 depending on what day I fuel up! All the regular bills have also increased, but my paycheck hasn't.

So, we make adjustments...first thing, the savings acct gets neglected, we bypassed a real vacation this summer, and I've added 'leftovers' to the supper menu.

The latter really had to happen,because I can't seem to cook for 2. Molly and I can split one serving, and the sarge can have the rest. Those beans i made last week??? could have fed 6 people...can't seem to cook them any other way. I wonder if I will ever get over cooking an amount sufficient to feed us AND the boys! They've both been gone since 2006...and you would think 2 years would be long enough to adjust....*sigh*

I can't imagine this strain on college students, single moms, and the fixed incomers. It breaks my heart, and I so hope WHOEVER takes the USA helm steers this economy in a direction that takes care of the working stiffs. I hope, but the worry is deep as I really believe that the current administration DOES NOT CARE whether or not Joe Blow can save a dime, or can pay his utility bills. They have never known the fear that comes when creditors (paid hit-men) call your house, tell your children what a loser their mommy is cuz she won't pay her bills, and SCREAM at mommy when she finally gets to the phone. If they knew what went on with these firms, SURELY they would put a stop to it.

If those of us that have the ability to speak up for ourselves can't get the job done,just imagine what's going to happen to our special children! We have to do something
NOW! Please get involved/educated, vote wisely, and keep active with your congress. Be the squeaky wheel!

MAKE THEM STOP THE UNNECCESARY SPENDING! And make your representatives do it at state levels. Make them do like we have to do. give up the extras, tighten their belts. and I'm not talking healthcare...I'm talking THEIR PERKS and RAISES!

And to the top 1%?? The Ultra Wealthy??

Really...what are you going to do with it? Another house?Another car? HELP the govt with the economy! You obviously know how to handle the big dollars, TEACH THEM If you can't do that? Set up help here in the states for the struggling! That's not socialism...that's Christianity....or just being decent human beings. Do it in a central system that we can watch, contribute to, and participate in.

Do something you can be proud of. Look at the problems, Form a Committee...set up 10 areas that need to be address AND THEN ADDRESS THEM! Yall could CURE CANCER if you put your minds and your wallets to work. JUST DO IT!!

For the rest of us? Take care of your neighbors in whatever way you can, and start Demanding that
this govt that was suppose to be OF, BY, AND FOR THE PEOPLE start acting in just that manner.They cannot ignore ALL OF US, if we speak to them in one voice.

Ok enough ranting...I'll let Aunt Molly watch the baby for a sec, while i attend to the latest carpet disaster...Did you know that OBVIOUSLY Halloween Oreos do NOT taste like double-stuffs...BUT, make EXCELLENT ORANGE finger paints??????


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Saturday, September 20, 2008

one of those weeks....i

where to start?? i KNOW...i was OFF two weeks!!

The GOOD NEWS? we have found out that she is indeed pooping! *whew*!!

The BAD NEWS?? it took me HOURS to fish the poopy pull-ups out of the pool!

Life with kids with SNs is always full of surprises, detective work, and you better have a KEEN sense of humor! We need to appreciate and develop that throwing arm also, as the pool is twice as tall as she, and the pullups would have had to be side-arm LAUNCHED up there!

and SPEAKING of smelly!! Molly and I were driving somewhere, and I smelled something HORRIBLE in what is suppose to be the 'new car smell' of our new Tahoe! OH NOOOOOOOOO!! I take a right, instead of heading for the weekly shopping, and bring molly home....but it's not molly! it seems something has crawled up into my air conditioner and died.....almost bearable if you don't have to turn the air on!! PEEEEWWWW!! *gotta love the ozarks* Oh yea...sorry moll, sorry i thought dead skunk-smell was a digestive issue with you!

The smells in the house are a little nicer, today...white beans and ham are marking the start of autumn...they take all day to cook, and the house smells....well...snuggly! I love this time of year....the food helps to define it...white beans & ham..with cornbread. Autumn has arrived.

The new playcenter seems to be doing more than providing entertainment..the physical activity has really got her "moving"....now we need to get her to move to the
bathroom! We are pleased that she is becoming more regular, and we can ease up on the meds....but now I'm wondering.. shouldn't the insurance foot half the bill of the installation? or if we should erect a cedar framed outhouse by the playcenter. hmmmmmmm

I had the g-baby all of last weekend, but can't seem to pull the little videos i made of her off of my phone! so you'll just have to go peek at her 3 month old face in her album in the myspace home! Her mommy and dad had a weekend of best-friend wedding in Cape Girardeau, so baby came to stay with us! It was the first time they had been out as a couple since her June arrival and we were happy to give them some fun time.

It was my first time being on gramma duty...and I LOVED IT!! no blogging though as I had forgotten how newborns are REALLY NEEDY!! It does give you some added incentive to get things accomplished though, when you know you only have a 1/2 hour of naptime to bathe, vacuum, dust and get dinner going! SUPER G-MA!!!

Molly says Aubrey's name, but it was discovered that she cannot pronounce J's! She calls the baby Aubrey E-LO! (jo)

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Hurricane Ike rolled through that sunday morning...scared the fire out of us, but we maintained power during the 60mph winds. Unfortunately 3000 of our neighbors did not. We are blessed that he lost some of his punch by the time he got to missouri. Prayers to those rebuilding in Texas...i can't even IMAGINE! The wedding party also reported that they awoke to a dark motel room...no coffee or breakfast...and came home early on that Sunday!

Tuesday, we tried to go to the new dds. We've been trying for nearly a year now, to find a good dentist for her, one that will sedate and not scare her. This one was a two hour drive away, but we're at the point of doing ANTHING and going ANYWHERE!

Her old dentist changed policy and was insisting that my friend/doc here...be responsible if anything went wrong in her chair! (signed waiver from him) She was in Springfield and used versed....but it wasn't working that well with Molly anyway.

I thought the new waiver policy was OUTRAGEOUS! and even though i know the friend/doc would do anything we asked...i found myself ethically bound NOT to ask! as IF! I heard many complaints about this from other parents of
children with special needs, many of whom DIDN'T have a doctor that would agree to such nonsense! Liability Insurance trumps dental care now! She was the only game in the area, also....hence the reason for the new dentist search.

So the new dentist was referred to us through molly's caseworker. I won't be making that mistake again. I keep expecting someone who works for the state to have A CLUE...but such is not the case. They keep telling me to send them information from YALL'S caseworkers...so they can figure out how to get molly some services!

*banging head ..board*

This dentist won't work on Molly...and his nurse *ratchett* actually squinched her nose when she asked me.."Is she AUTISTIC?" ah yes, evidently now at hygienist school, they teach them how to diagnose many things, although she missed the DS.

Dr Doom did however (well to Larry, as I was given the
"signal" to go to the car...i only get that signal when the sarge sees my eyes watering and my fists balling up...saves on legal expenses) gave us a few references. Wow, just what we needed, more references on who to see....like HE wasn't a reference! He then berated me for not having a dentist!! (that's when i got the signal) This is our 4th or 5th referral...all of whom have referred us
to someone else...and OH YEA! $$$$$$$ they ALL get paid hefty for seeing us!

not doing anything..just SEEING us!

I am in the wrong line of work *grrrrrrrrrrrrrrrrrrrrrrrrrr*

My wonderful husband, who knows I'm way past upset...(but is just too much of a man to understand why emotions have to come into the situation) does make a side trip to Mantauk Park...something neither of us knew existed, and we took a little nature hike full of Missouri waterways...a bubbling spring and a glimpse of the greenery that will soon turn into autumn. I did calm down a little after that (ok, that AND a margarita at our favorite Mexican restaurant)
*he knows me too well and this pic is why i really love the ozarks*


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At the dds...he is only catching half of the conversation...he lost all the hearing in one ear LAST week, when driving over to the 'boot hill' area of the state. I blew it off to congestion, and/or altitude change, gave him a decongestant on that saturday night.....then had him to the ear guy on monday. They have one chance to kill a virus that likes to attack the ear nerve (same as the chickenpox) and we did a week of high dose steroids and anti virals.

Andddddddddd that didn't work.

This week? off to the MRI house to make sure there is nothing growing on that nerve to cause trouble(tumor) and the following week into discuss MRI results and plan B.
Plan B isn't looking too good, as there is nothing they can do for it. If it's gone...it's gone.

I guess plan B is a second opinion.

*I am developing waiting room butt*

I was SOOOOOO looking forward to sleeping in today...Saturday morning was my focus for the week...no real plans just to GET THERE!

We EVEN had an incident on Thursday that involved my German Shep diving out the front window and taking out a SCREEN!! freak me OUT!! It seems that a possum ( NASTY!!) had wandered up to the front of the house, and decided like that was a good place to nap!! EEK!! mama squealed like a pig and threw everything in the house at him (right..good...he's looking at me like "ho-hum..that all ya got?) when daddy came to the rescue with the GLOCK???

oooooooh no...my big strong cop-hubby was wielding a broom handle!! seem to do the trick though! Here is a possum...they look like a big rat that has never seen sunlight...not my pic...just A pic, and I could puke just showing you!


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So,with much effort...i took Hattin the Cat to the vet this Saturday morning...we seem to be having some bad health luck all the way around! Hattin had to have some IV fluids administered, as well as shots and meds...it seems HE has a virus!! I didn't even know cats COULD get a virus!

I ended up dreaming about work all night *they should pay overtime when that happens* when the light BLASTED into my room at 6am, followed by a LOUD VOICE demanding DORA!!

*good morning*

I stumbled to fixed the tv, and much to my surprise.....she shut the light back off, crawled in and snuggled up close..and it wasn't dora...this week the DVD that can make her giggle silly...is of all things...THE PINK PANTHER!! sing it with me now......."da da da dum...da dum...da dut da dut DA dum......da da da dummmmmmmmm"



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She likes him AND Tom&Jerry!! all the stuff that doesn't have alot of language in it...*sigh*

This morning we'll toss all 'learning' DVD's to the wind...and allow her the cartoons, only because of the peals of laughter that come rolling out of her! It seems she also finds bumps growing out of bopped heads...
and kitty tongues flying out of fry-panned heads....just too delightful! (i KNOW! no emails please! ha!)

So this sat morn.. we snuggled and listened to Henry Mancini music, and even though i knew i had a whole house to sanitize, as well as the cat/vet trip...I'll take that 5 minutes of snuggle time. I'll be grateful that we have a warm, big, bed, and the means to continue the hunt for good doctors and good health. I will offer up my frustrations and headaches...to those that have needs much greater than ours...and try to be thankful for the blessings bestowed on me.....especially the little blessing snuggled in my bed this morning...teaching me about
priorities.

and if you made it all the way through? KUDO'S TO YOU!! now go kiss your kids, and know that EVERYONE has weeks like this! we will muddle through...knowing that the good times are around the corner...and they will be SO MUCH SWEETER because of weeks like THIS!


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Friday, September 12, 2008

Reflections on 9/12

The day after 9/11.

It continues to be hard for us. The day after the attack on the Twin Towers, The Pentagon, and Flight 93's heroic effort to keep our Nations Capitol safe...we get another call. Larry's mom has
died of a heart attack at home. We did not know about her heart. We still don't know if there was a condition, or if the stress of the day took it's toll on another victim.

I wake this morning, looking forward to my first weekend with baby Aubrey at home with
gramma for the weekend!! I try to push our tragedies out of my head, and go to Coleman Scotts carepage to see how they're doing. Coleman has just had his second relapse to treatment...in his ripe old age of THREE YEARS.

This is his mom's slant on the day....and it really slapped me out of my own funk. There is a fight to be fought, and we are the contenders! The one fact that JUMPS out at me is:

FORTY SIX CHILDREN TODAY ARE DIAGNOSED WITH PEDIATRIC CANCER!

www.carepages.com
cp ColemanScott

You can wear a gold ribbon- Tell everyone you know (and don’t know) about the kids in this war. Talk about their battles…Talk about the casualties. Talk about the HEROES. Help bring awareness.


Click on these links…check them out. Don’t think you can’t make a difference, because YOU CAN! We need to start somewhere. Start today. You can stand with us and FIGHT against any more attacks. Together we WILL be heard…we WON’t GIVE UP UNTIL WE ARE!!!

Our kids need a voice in this fight.

click and join PEOPLE AGAINST CHILDHOOD CANCER


Go to curesearch.org to find out more ways to help


Eat at Chili's this month- a portion of their proceeds will go toward Childhood cancer research- Sept 29th ALL proceeds donated.


Do something- anything to help bring awareness to our fight.

Don’t stand frozen because it isn’t affecting you...because it’s too sad, or you’re too scared.

I’m here to tell you, it COULD BE YOU- IT COULD BE YOUR CHILD!

Wouldn’t you want someone to stand with you in your fight?

We took a moment of silence today to pray for the way too many families who lost love ones on 9/11. Our country was forever changed that day. We remember. We honor those who lost their lives way too soon…it was wrong, plain wrong. September 11th- is a day none of us will (or ever, ever should) forget. This post was not made to take ANY honor or importance away from people who lost their loved ones in the attack of 2001.


Sadly, Sept 11 2008 will be remembered as diagnosis day for 46 families (46 kids diagnosed EVERY single day) A 'terrorist' attacked 46 times today, and there are parents standing in shock tonight.Tomorrow it will happen again….and the next day, and the next, and next... until we do something to STOP it. We prayed for the parents who had to bury their children today- an estimated 2,500 kids will pay the price this year …7 each and every day. WE PRAY FOR A CURE!!!

The children of our country deserve it. They need US to stand together and say “ENOUGH”.
Won’t you stand with us?

Quoting the hero Todd Beamer…“LET’S ROLL.”

Wednesday, September 10, 2008

This aired on the CBS NEWS tonight


Watch CBS Videos Online


and what a FABULOUS ARTICLE IT WAS!

Thanks to Jack, for being such an outstanding
self-advocate (met his mom at the KC Conference)

and to Katie Courick

and to Sarah Palin

for helping us get the word out! FINALLY!

Saturday, September 06, 2008

where have i BEEN??

where have i BEEN???

I've been in the back yard!! HOlee MOlee...i was hoping to come in and show you our project...BUT IT ISN'T DONE YET!! When it is, it will look like this:


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but as of now? it is just the two story base, and THAT took 3 men 4 DAYS!!


Molly keeps bringing us the picture, and saying SWING? WEEEEE ??(her word for "slide" is WHEEEEE)

Yes, Rapunzel...one day this year there should be a swing and a slide on your tower!


If you EVER attempted such a project...take the week off and make sure you get an RX for PROZAC!


We laughed at the fact that we could have it assembled for a MERE $700.00!!! now? I'm thinking, maybeeeeeeeeeeeeee that wasn't such an outrageous price!


School started and with a few bumps.

First, our beloved bus driver (rita who also drove the bus when the OLDER kids were in elementary school) lost her mom, so she didn't start the year. JB did. JB is a bearded man, probably 7 foot tall and weighs about 400. He is driving the new BIG AS A TRAIN school bus, will all the bells and whistles, and molly DID NOT LIKE THIS ONE BIT!

so mama drove her in on days off.

THEN they didnt start her special classes for the first week, and even then? Miss Kristie the speech teacher, lost her FIL, so she has still not been there!


Blessings out to both families.


We are working the calander here, and molly has gained a new appreciation for the weekends. I'm back at work full time, so today was celebrated two-fold!

Last night? Stand Up to Cancer aired on television...one section featured King JuJu and his mom's words. Her's is the fourth story to be read, and she got to be in the audience. CONGRATS MIMI!! Your hard work keeps this precious childs name spoken, his memory fresh, and the fight continuing!





I cannot wait for a cure to be found! The scientist working on it last night, sounded like it could be JUST around the corner!

Other than our rough school start...things are Fab here. Molly had BOTH her brothers home last weekend, and we all got to share watching shauna run a 1/2 marathon in virginia beach...online!

She did fabulous, and is working on the next one...and her first full marathon in Orlando in January!

I'm thinking we all need to be there LIVE for that! YAY!


Next week, dear readers...back with a MONTAGE of the project! and hopefully with pictures of the FINISH!