Tuesday, June 28, 2011

Me and my girl Dancin

Just got this video sent to me. While we were on vacation my friend Jerimarie walked up on me and Abby dancin in our friend Gails kitchen. There was no music..just us. I was aware that Jerimarie was standing there but not that she was videoing or taking pictures until the flash at the end.
Just me and my girl....Love her!

Friday, June 24, 2011

Words can mean so much

Abby has got something going on here lately. Not sure what it is but I hope it continues.

It's hard to explain but it's like there is something firing in her. You RettMoms will know what Im talking about. The whole thing with Rett Syndrome is the connections between the brain and body dont complete. The brain is intact, the spark is there but the road is too short and filled with too many obstacles to get her where she needs to go.

Ive said before that Abby has never has been a Silent Angel. She babbles and yacks and looks at you like she is speaking a language.

Every once in a while a word approximation will get out...Hitting the tv saying eee wee. Someone says Angelina..Abby says Yah Lina. Goingto the doctor we on occasion get okker okker on the way there. They always bring tears because we know she is trying so hard.

For the last few weeks we have been getting actual words. Out of nowhere more and more frequently. What used to be a sudden word that would shock the room 3 or 4 times a year is coming daily. Just 1 or 2 but Im ecstatic. Strange thing is her teacher told me when I told her we were going to go on vacation that traveling and seeing new things do more for language and vocabulary than anything she could do in her classroom. I just remembered that as I was typing.


We are getting Yah and No's daily. Not every time we ask but at least 2 or 3 times a day.

While on vacation and visiting Seaira's classroom I asked Abby is she wanted to go to school there when the teacher was visiting with us. Right away and clear as day Abby said,"No Mama"

The teachers mouth hit the floor and said,"She can talk?" I had to say,"No. But fortunately, every once in a while the words just spill out but not usually together like that." We were stunned.

Right now she is dancing around the room speaking"Abby" ooh yaa ducca laaa yaa boogah nah woo ya. I wonder if she is singing along with her Nick Jr in her own way? She just ran up as fast as she could and yelled"Dah, Good."

Last night when we picked up her Dad from work he opened the van door and she yelled,"Hello."
We all sound like a bunch of parrots every time she gets a word out. We all yell it. Last night 3 adults yelled."Hello" right back at her with smiles and tears.

Im hoping one day soon I wont remember the exact date she ever said any word bacause there will be too many to count....One day soon

Friday, June 17, 2011

Vacation

As always I am behind.

Abby and I got back from vacation a week ago and I finally have the pictures together!

Almost every year for the last 4...we missed one...Abby and I get together with four other Rett families from a support group I started back in 2007. There are actually 9 families but the others have not yet been able to attend.

I wont go on and on about every detail but I will show you...or bore you with a picture slide of my trip..with captions instead of having to read 12 pages of everything we did you can just see it.

I will tell you before hand that one of us was not able to attend this year and we were heartbroken so we blew up pics of Tracy and her daughter Angel and included them in our fun...and no its not creepy. We love them!

For those of you who arn't Special needs parents...Our time together..even just that one week a year or a weekend here and there...it's the only times we get to feel normal. Like we feel that we are surrounded by people that get it

Everyone loves each other like the family we all wished we had. Its instant and unconditional.

All pics were taken in Oregon and Washington

Enjoy!

Please click on the link. When I loaded the slide to my blog it foze up but is viewable in its entirety below.


To view pics click Here

Wednesday, June 15, 2011

Happy Crap Day!

Ever have one of those days??Weeks??Months??? Years????

I more than realize that I am not the only person in the world with problems but I do believe I am getting more than my fair share!!! Let the bitchfest begin!!!!

I hurt my back a few weeks ago. I knew it was hurt but thats part of my job. My back hurts alot. I have to lift a 50 pound kid a dozen or more times a day. It wasnt the normal hurt and I knew it but I suffered through it. I had a vacation coming with Abby, where we get together with other Rett families once a year.My tickets arrived anonymously after I bowed out and said I could not come this year. Couldnt exactly cancel when someone wanted me and Abby there bad enough to spend $900.00 to get us there.

So we went. 2 planes there and 2 planes back. 6 days of swimming,Hiking,Mountain Driving...no way I was climbing..and playing with other RettGirls. We went to A National Park, A waterfall, Mt Hood,Seaside Oregon and more. I was in pain and everyone knew it. The other Moms carried and lifted Abby when they could for me..didnt even have to ask. My back hurt so bad I would lay in bed at night and cry.

2 planes,4 carry ons,Abby and a wheelchair later we came home on Friday. I was in tears when I got off the plane. The next day the brakes went out of our POS van. See Post below..

Today I couldnt take it after I didnt sleep at all last night. I called the doctor and they could only see me today if I got there in the next 10 minutes. I live 20 away. I chanced it and was just a lil late. Dont know what difference 5 or so minutes make when you sit in a waiting room for 45 minutes. Then an exam room for half an hour before the someone comes in to take your temperature. Then 30 minutes till the doctor comes in. Then 30 minutes for xrays and on and on. After that I got a weeks worth of once a day muscle relaxers and an order for Physical therapy. 2 blown discs. Nice huh?

No big deal right? I have insurance. It must be good insurance too cause we pay almost $700 a month for it. More than that some months. oh but it is a big deal...My husbands company..who changed insurance and gave us nothing more than a card. No handouts, no packets...Besides the fee going up 80 dollars a month we apparently have a 1,000 dollar deductible now and they don't cover DME(My backbrace) nor will they cover my physical therapy until I pay the first 1,000 friggen dollars!!!

Ok breath Terri...If your kids needed it you would do it so I agree to it. I agree to 6 weeks but warn them I may only be able to do 3 with the cost. So, they work on me and show me positions to help the pain. How to get up from laying and sitting. How to stretch and strengthen. I get out of there with almost an hour to spare before I have to pick up Abby for her therapy for Scolosis. Cant believe I still have an hour...till I get into my car and realize that the clock in the therapy room is an hour behind and I am now 25 minutes late picking up Abby from school... Can you say Heart attack??? No one was answering in her classroom..Total panic attack to the point of hives on my face and neck. Now running..and limping with my backbrace on into the school to find her sitting in the office with her teacher. Man I owe that woman big time!!! And I need a watch!

Thats my day so far....Still have a 40 mile trip to make in the 98 degree heat and have to brave the giant line at the pharmacy..

I guess nobodys peed on me yet today...

Score!

Tuesday, June 14, 2011

Pamster

Shout out to the Pamster!

She is going to kill me for posting this pic BUT...she never lets anyone take her pic. Goofball.

That being said. I just wanted to let you all know a little about what this woman does for us.

We have 1 car. One 13 year old,no airconditioning pos van. When Abby needs anything or I need anything she becomes our instant free car rental or chauffer.It is a very rare occasion that she tells us no. I can think of twice in 10 years. Once she was at a social gathering at a friends and the other time she was hundreds of miles away at the time. I seriously one time borrowed her car 9 times in one week.

Saturday the brakes went out in our van. No squealing for a while no nothing. I call her up Sunday night and she arrives Monday morning before work to take me and Abby to the hospital for an appointment. An appointment in which Abby screamed her head off the entire time. Not a word from the Pamster. Nothing but love. Even does all the lifting of Abby and the chair since I have been having horrible back pain for weeks!

Last night I call her while she is at work. I need a ride to swim then to take Abby to school...again all before work..no problem. Arrives bright and early lets me have the keys and grabs the rest of her zzz's on my couch.

Weekend before last she shows up Saturday and Sunday just to see if I need help. Seriously people. If everyone were this good a friend or a family member the world would be a much better place.

If you happen to have you very own Pamster...lucky you! Make sure you say THANK YOU!
I just did!

Thank you Pam. We love you!

Thursday, June 2, 2011

Bubba graduates!

On May 19th Abby's brother and my oldest and only son graduated high school. YEAHHHH!!!!Here are some pics we took around the even that are in no order that makes any since because blogger drives me crazy!!!
Grandpa John and Grandma Gerre
His class. Thats him there in the red:)
Lovin the shirt and tie!
Snigg sniff...tear
Awwwww
Our friend Rick who supports us in everything!
Video of the Graduate. 3rd young man on the right!