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.
1 comment:
Did you ever think of doing a wish for Madie? (Thru Make A Wish?) She most certainly would qualify for one! A diagnosis of seizures/infantile spasms would be enough for her to qualify! You could get something for her that she really needs...or better yet...take a beach vacation with her! I'm sure they'd even let you being a friend or family member to help you out! You could take her to Disney! I've heard the whole Give the Kids the World village experience is the best! Think about it.
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