Saturday, November 5, 2016

Appointments and a good madie update!

I hate appointments they make me anxious and after them I am usually so tired from just trying to stay calm the whole time talking to doctors and trying to keep  my thoughts strait....
We had two this week.
Yesterday we spent nearly 3 hours in Hartford Hospital cause Madies leg braces are not fitting her correctly anymore we have to get them adjusted..SO I made an appointment with the Orthopedic doc...thinking that this is the doc who does the braces...well I get there late cause I was stuck in traffic directly in front the the same court house I was divorced in... And I check in and wait.. whew. Well they call us in and lead us to room...Um..its like a storage closet.. I comment "oh I guess we are meeting in the storage closet" The gal looks at me and says that they don't have us in for having an appointment... I tell her well we made one with ortho because madies braces don't fit right...
"Ohhh that's next door in 1A... "
Okay so instead of leading me to a storage closet....
I leave there and go next door...(its in the hospital so we are basically going a few feet over)
I tell the gal at the desk I am so sorry that I went to the wrong place and was confused when I  made the appointment.. "oh you need to go to x-ray" she says after she signs us in and we DO have a appointment there.. so we are sent thru a few doors and off to radiology we go.
Xray went fine Madie doesn't like when folks mess with her and hold her in ways she doesn't wish but we got some xrays of her pelvis. lol they looked funny.
We leave there and head back to Ortho and they escort us to another exam room to wait for that doctor. 30 minutes later a fast talking woman comes in and says all is growing well and madies bones look fine nothing is growing crooked or into each other... all looks normal. She takes a bunch of measermenst and number and moves Madies legs in way
s she doesn't wish... At this point we have been there for about 2 hours and getting weary.
So we finish up with that doctor and back to the waiting room we go. We are now able to see the brace guy..we wait about 40 minutes...Madie begins to cry and get fussy..another kid in the room keeps saying "Its ok baby" "Its ok baby"and offering madie a soggy goldfish..till mom finally calls it.
Finally in  the homestretch and we meet with braces guy we strap them on madie against her wishes but she does well... yeah they are too tight and leave red marks on sides of her little knees.. So in order to fix them they have to unscrew some parts and adjust..which can take awhile so after we have them all marked up we leave them there for about a week the doctor says... they will give us a call when they are ready. And that was that. 3 hours had past and we were finally free! lol
The easy part was getting the car from valet parking!
Madie bugger fell asleep in the car.

Earlier in the week we also had  Neuro appointment this one was much closer in Farmington and in a nice office building with only 2  Madies seizures have been kinda yuck... I wont lie.. I really don't know what starts to bring on increases when she was doing so well for so many months.. I managed to video some of them on my phone to show doctor which was GREAT..gotta love technology!  We talked a bit and I told him the days she had her big seizures and that most mornings she wakes up having what I call snort seizures..she snorts and her limbs flail out and this happens over and over a few seconds apart from each other... THOSE are the nagging ones that wont quit and can happen daily...usually upon wakening 530 ish in the morning,... :(
SO he suggested that we increase her med...Shocker of the century... But I am going to go with it... It not a huge increase and she has been on this med for long time. He also suggested that we look into Banzel...another seizure drug...or Onfi... which I have heard is very strong... SO ehh..... but he gave me some info on them...I gave the stuff to Miles to read,.... I don't think  he was to sold on it either..
I feel like we have been there done that with  the mixing of drugs and It breaks my heart when you read things about kids being on like 4 seizure drugs and still seizing like 100 times a day its horrible! What doctor says that is ok?! the kids are zombies and the parents are at the doctors mercy to help their kids...makes me sad... hard to control seizures are heartbreaking. I used to say when we would add any drug that if the kiddo was still seizing and still at the same rate it was not working and I would push to try an different one...never add a new one...Its crazy.. Its our lives....

Anyhoo.....SO appointments went well and this mom kept her anxiety at bay which was very triumphant for me...
I have one more on Monday for me to my doctor who will tell me once again that I am still fat and that I still need my blood work done... hopefully I can get out of there fast....
Then on Thursday I volunteered to go to Sturbridge Village with Madies class... its an all day trip and probably too much walking around...It gives everyone a good pice of mind when I go along I think everyone kinda freaks out having Madie out in the real world outside the safe  I got a note thanking me for volunteering and that I would be in charge of a group of 4 kids....UH....... I as assuming I was going to be with just madie and her para...not be in charge of other kids! wtf.... SO cue anxiety about THAT... sigh.  I am ready to get some good exercise that day though..maybe shed 1/2 a pound..hahaha
I think kiddo will do just fine she loves to be wheeled around and see the sites.

Okay well I think I got all my stories out today its a chilly day in the ville and even my kitty wants to be inside! lol Nothing much going on today just enjoying the quiet really...being a hermit. And its ok.
Hoping kiddo is having  good weekend and missing her... but this mom is thinking of a little thai food tonight and a movie. no hot dates for this gal.
OH and I have to say that Halloween weekend was really fun. It was crazy how many people they could fit into my tiny downtown and all the great costumes I saw! The hangover not so
I have also put my  tattoo on hold....200 bucks is a lot of money... I got bills to pay right now but its still on the table..the guy drew a pretty cool one up for me...even has a small frog in it! Awe man...200 bucks...dangit.
Well I am loosing focus... here are a couple pics It was a fun day and almost 80 that day!!
She is such a happy kid with such unconditional love in her lil heart.

 fat cat in the!! she loves the breeze!

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