Monday, July 20, 2015

The Scoop. And some Jamie Rambles...

Just Type in "Plastic Rain Sticks" into a Google Search and you can find some links to the exact one Madie has in her picture! They are about 10 bucks and WORTH every penny. :)

Anyhoo here I am. (rock you like a hurricane...lol er something)

A lot going on. I am just happy that this week we do not have to go to Hartford for any appointments. WHEW
Nothing scary just kinda routine stuff... EEG was good..they only see spikes when she is sleeping which to me makes sense cause she only has seizures when she is half asleep or sleeping..but not all the time! We kinda joked how we should just keep her awake all the time now. lol Dad can deal with THAT meltdown! LOL
Also met with GI guy I am slooowly moving forward with Gtube process but no appointments for surgery have been made. Kiddo is doing good but she has yet to gain any weight. That is to be continued....baby steps!!
Also met with an Orthorpedic doc..was thinking maybe some AFOs for her footsies would benefit her but she recommended some Velcro braces for her knees that always bend when she bears weight on her feet making her ankles bend backwards and not giving her stable support. these will make her sit more with her legs OUTward which I am more than sure she is going to HATE with a passion. My little frog sitter... I believe the report said "frog lateral" which kinda made me laugh.
She was SO high energy this lady...I was taken back by her. She spoke fast and had unruly grey streaked hair and those hiking shoes by Merrel on...she was something and was able to show us just how madie stands without even making madie "stand"...
We waited an hour in that small room for a 30 min appointment and an "OK get these knee things" diagnosis.
NEXT please!
We will go in August to get checked out for those or fitted or whatnot.
I dunno other than that not much really...get lost in my thought a lot. Have not been to the beach and miss it terribly. Dad lives near the beach now and can take madie on weekends which is good...she loves it! I dunno its a whole family dynamics thing. I really have no idea when I will be going there again.. Makes me cry.
Feeling very left out. I love them all so very much and don't want to be a burden...Im a tough cookie but when it comes to family they all mean so much to me. Therapist said I have abandonment issues...YA THINK?? ME? NAHhhh!! Lmbo. HOLD ME!!

Enough about depressing stuff.....
Its another hot one in my neck of the woods and for a long while I did not have an AC...unless I wanted one that cooled more than 2 square feet I was not going to be cool and I was going to spend a ton of money which well was going to the last rubber check...SO...I just grinned and beared it. And seriously was pretty use to it! Than one day I turned to FB and asked if anyone out there had an older used AC they were wanting to get rid of for a good price I and that I would snag it. I get a message from an old friend I went to school with in grade school and she asked me my address....I was pretty stoked thinking she has an old AC she is going to send me and for her to let me know the cost and the shipping etc and I could pay her! NOPE. out of the kindness of her heart and or some kind of angel watching over me....three days later a new AC arrives in the mail and a note saying she was thinking about us and to stay cool.
I cried. I couldn't thank her enough...WHO Does that?!
There are so many times when I feel like nothing is going to work out and that the world is just a lonely place..and when I least expect it something great happeneds.....I never feel deserving when I cannot give anything in return...how could I ever repay all the nice things that people have done for me? I cant go sending them all on vacations! I wish!
The world still gets lonely at times and I really have a wish list for life a mile long...lol Its very colorful actually! Love.... I am tough to handle sometimes and I am moody and I leave my clothes on the floor and I am a terrible housekeeper...lol But I am Jamie. OH this is not a dating website?? LOL If someone takes care of me I take care of them and the other way around. Takes two. And we learn from each other. ya know?!It gets exhausting putting in all the effort only to feel alone... Oh my achy breaky heart. (shout out to billy ray when he had a mullet!)
Sigh...who knows. bah.
Well enough of my rambles for today. Lawn guy is outside making noise and the ADD is kicking in... Gotta get myself moving I guess. Happy kiddo off to summer school wheelin her down the driveway laughing as we narrowly miss some kind of animal guts/intestines...gotta love all the feral cats!

Hugs from The Ville! Kiddie pool is on today by 1. NO skinny dipping! That's only on Thursdays.

Me.

Tuesday, June 23, 2015

Beach and Rambles


Here we are.
Oh how I love the beach. Its the most calming place.. I wish I lived at the beach so much! Cant really rent near the beach...SOmeday I hope to live near the beach I just love it. But who knows! Each time I go there I just soak it in....
A lot of appointments coming up for madie..each week we have one. Next week is GI and week after that is EEG and week after that is Ortho for her AFOs..in meantime summer school will be in full swing but till then she still has another week and a half. Not doing much this week feeling a little cabin fever and its been boiling hot outside not that I am complaining cause the winter was horrendous! Just a couple dog days and it will get more comfortable soon :)
The school year is out and second grade is done. One more year at her elementary school and its off to middle school...pretty freaky. Cant and wont imagine madie without her Para.. I have been itching to relocate sometimes but Ill see where life take me. I dunno...
All has been going I guess.. Had to have Dads car towed from my place yesterday the poor car is on its last leg... But miraculously STILL up and running just barely after the mechanic fixed the starter! Unbelievable! I wanted to tell him that if we were married a new car would be more feasible...LOL but nah... Ill keep my smart ass quiet. I hope he finds something...wonder if he would like a fine lookin dented 2007 civic? Just kidding... Yeah I thought the old car would certainly be the end...I stayed positive and kept hope! Nine lives that car has...nine lives!
The AAA tow guy has no teeth... LOL
ANyhooooooo... not much to ramble about today just feeling antsy as all hell. None of my neighbors had any mail in their mailboxes and I have one bill....LUCKY Me.
Ready for the weekend for sure.

Me.

Wednesday, June 3, 2015

SHoo Wee One Month!
Well here I am hangin in there!
Still no laptop but I did acquire a monitor that I can hook up to my broken screen laptop and EUREKA I am online with a keyboard. HA
In Madie magoober news she is getting big for sure and if your not a FB friend of mine I am sharing some pictures :) BUT first in news....
Adding TWO new docs into the mix...A G.I doctor and an Orthopedic Guy ;)GI is very important and hoping that when we go we will see SOME kind of weight gain...
I have to go into my shpeal....bear with me.. Part of me is anxious to GET her the G-Tube button and part of me is hesitant... I believe that the button will alleviate the stress of worrying that she is not getting enough nutrients... I will literally liquefy fruits and veggie and feed them to her...AND yes she STILL will drink her sippy which she is very good at! And loves her water and her occasional apple juice treat...Eating has been SUCH an issue with her...I am tired of her being on supplements...I want real food... And don't forget the terrible constipation! :( THEN there is the what ifs...what if her tummy totally rejects it and she vomits or she gets sick or she ends up with the tube forever? I look at her and of course to ME and Dad she is PERFECT and is certainly Dads physique lol Tall and skinny! But oh my baby girl.... I just look forward to meeting with the GI doc and all three of us talking about it and learning more about it and HOPEFULLY making the right choice. Been waiting awhile for this appointment! We both love Madie to the moon and back and just want to make the right choice... Baby girl needs nutrition! In the land of supplements she is SUPPOSED To have SIX boost essentials EVERY day....lucky on good days to get 4....so. yep. :(

THEN there is the Orthopedic.... Well this in not so scary nor is it a hard choice...we are going to get her fitted for AFO's on her feet...It will help give her extra support when she does her therapies...she just had no muscle tone and strength... when she bears weight on her feet her the back of her ankles bend out behind her.. So....hopefully in next few months we will have them.!

And in Mom News...well one day at a time! All is going. No earth shattering news. I think I have about a dozen tomatoes on my tomato plant! lol
Oh and how can I deprive you all any longer of some precious madie pictures!!
Be well everyone Ill keep you posted!!
Me

Wednesday, May 6, 2015

nothin much

OH MY GOD I WANT A LAPTOP SO BAD!!

Things I dislike about my place: iTS DRAFTY. IT HEATS and hot waters with OIL.It does an awesome job heating outside for nearly 4 bucks a gallon.... The dryer is outside on the porch. Its COLD in the winter. there is one bathroom and its thru the kitchen and I have to sit sideways on the toilet....its that small.(the bathroom) The screen porch that contains my dryer leaks in the winter. It has two floors and is tricky with kiddo..
Things I like: Its got such character! Its sunny anytime of year. I have a cool clothes line. The VEIW from my room is AWESOME I want to soak it in when I look out... The grassy area is nice to sit on with madie and its peacefull. No one is ever home around me..It feels like a little cottage and I have also worked to spruce up the outside...the grass is mowed for me and I dont have to shovel...the outside is clean and newly painted and powerwashed..kept up well. And the rent is right. I make it work...Its the place I moved into when I was so scared and hoping it would just be a temporary place that all of what was happening wasnt real... Eventually I just made it home...I had too.
Bear with me I am loosing focus...Madie will not go to sleep and I am ADD....

Been worried about Madies Dad...newly diagnosed with kidney stones...as far as he knows anyway...an ultra sound shows nothing but he has all the symptoms..I dont know what to think but hes sick...my instinct wants to go take care of him and feed him all kinds of kidney flushing foods..lol hes hangin in there with 3 different meds...as he still goes off to work tomorrow to work outside all day. I really wish he would just take a few days..I still care about the guy! He has always worked his butt off...i hope to convince him to move closer someday but I wont press my luck. lol
I wanna say that madie and I will remain residents of our little town as long as we can...or if anything ever changes...ya just never know..lalalalalala .but I really like my town and its schools.Home Sweet Home..
I am runninng of. of battery and patience for this very below machine right now....I will blog more soon and keep all updated on how GI appointment goes...Im too tired to go into mt bg-tube shpeal or re load this page a third time...so much for switching internets...

hope everyone is well.
peace out homeslice