TODAY IS THE DAY!

my plane leaves msp at 945pm and gets into hethrow at noon london time!!!!


i can't believe it!
jkahsfdohfjasdbfjkashfdijas!

today

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in other less existing news, my scopes are planed for the tuseday before school starts.
we are also trying to get the emg on the same day so i don't have to be put under again
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back to london.

IM GOING TO THE HARRY POTTER STUDIO TOUR!!! ASOHFAJHFIUADHFIUADHFIASHDFUAIDHF

NEXT POST FROM LONDON

<3HANNAH

2 days to london!!

kadsfjhkashfjakshfdjaksdhfji!!! can't wait!!! we got tickets for the harry potter studio tour!!!

today is also DQ mirical treat day!! go get a blizzard and support your local children's hospital!! 

today i met with the GI doc and were gonna do an endoscpoy and a colonoscopy when i get back. they also ran blood work today.

and tuesday i met with my MG doc and were not making any changes before london 

AND TODAY I TOOK A BEAD MAKING LESSON ill post more on that when i get the beads back from the kilm so there will be pictures!!!  gonna send some to BOC!!

sorry for the rambley post!

<3 hannah

sappy saturday... ELCA youth gathering version!!!!

last monday, i headed to my church and got on the bus to make the 26 hour trip from minnesota to new orleans of the ELCA (evangelical lutheran church of america) national youth gathering.

i had gone in 2009 and it was life changing

despite many buss issues on the way down, we made it there by tuseday afternoon.  we were assigned a very VERY nice hotel just across from the super dome were evening worship takes place

tuesday night- dinner with the youth group
wednesday- spent expiring NOLA, i ate an oyster!!!
wednesday night- opening 'dome' (dome is a MASSIVE church service/ worship- 34,000 lutheran teenagers!!)
thursday- we headed to the convention center for a morning of worship and a day of exploring the convention
thursday night- dome
friday- our day of service, we weeded at a local park...  it flashed flooded!! 6in of rain an hour!!! crazy but fun!!!
friday night- dome
saturday-  morning worship then bible study, then in the afternoon we went exploring more!!!
saturday nigh- dome
sunday morning- worship
then we loaded buses and headed home... but we had A TON of mechanical problems and lots of delays!!! i won't go into that hole drama!!!

more about the dome...
its a teenage friendly worship with 34,000 other people!! these things are massive!! they are filled with music, speakers, sermons, more music, more speakers and a BIG finish

here is a speaker
a highlight video from the gathering


overall i had a great time!!!

music from the gathering

<3 hannah

ps i had some docs today, ill post about that tomorrow!

home!

we made it, after 30 hours on a bus!!!

I'm back on my computer now so there will be more posts this week.


im planing on a sappy saturday tomorrow about new orleans so watch for that :)

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look!! I'm famous:)
part 2, thanks mallory!!

anddddd pictures of boc beads being donated in honor of my birthday are rolling in!!! here are a few

look how cute!!! they will make some big smiles!!! 

i have a big week ahead of doctors ahead of me getting ready for london, so I'm gonna take a nap!

see y'all tomorrow!!

-hannah

Made it!

I'm in new Orleans!!! Ya!!! It's very hot here!!! I can't wait for the confrence to start!!! Mom, Matt (my youth director)and I worked hard to make arrangements for me to be as indepent as posible, but we did plan on the hotel being an issue... It's huge!! Ive already fallen behind and got lost! So were gonna make another plan. Oh and go check out Mallory's blog (I'm featured!!!) sorry I can't link I'm on my phone :( That's all for today! -hannah

home!!!

hi y'all

sorry there have been few posts this week... mom and i just got back from coloardo!!!  then i leave for new orleans with church tomorrow morning!!!

doing some quick laundry and making hannah friendly foods for the bus :)


we had a bit of drama at the airport this afternoon and ended up in first class!!!

ill be gone for a week, so limited posts this week to (sorry!)

then the week after is full of doctors getting ready for my big london trip!!! CANT WAIT!!!

annnddd i got my new medi id bracelet :) its pink!!!

AND TOMORROW CHECK this out WHEN I AM FEATURED ON MALLORYS BLOG!!!
it is a 2 day event so check back then to!!!

thats all for tonight!!!

song- getting in the mood for new orleans!!!

<3 hannah

birthday hangover

today was a long day of getting ready for tomorrow when mom and i head to denver!

i got up and showered and washed a bunch of cloths

then we saw the eye doctor- he put me back on the drops (LAME) and says that surgery can wait or maybe not even happen!!!

then we had clinic

then we had doc sing and we talked about my belly and when i get back from london i will see a new doctor

then i packed the cloths i washed
and now i am SUPER tired, and can't spell apparently... LOL

so im gonna go to bed

<3 hannah

ps if you are a bead artist participating in the bead challenge... can't wait to see them!!! :)

OH AND ALSO WE GOT MY CT RESULTS BACK!!! M THYMUS IS NORMAL!!!! YAY! but they noticed something else... not gonna worry about that now, she said its not that big of a deal and ill meet with my mg doctor we will talk about it :)

happy :)

IM 17!!!!!!!

TODAY IS MY BIRTHDAY!!!

i had a great day!!!  i had breakfast with gpa, spent WAY to much time playing tetris and watched 16 and pregnant (don't judge... its addicting!)
then we went out to eat at joes crab shack! lots of fun!!!!


i really don't feel much older...



i had some belly pain today though :(
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back to birthday...

if you want to help me celebrate, donate to beads of courage :)

if your a glass artist head over here to participate in a birthday related glass challenge!

ill post pictures tomorrow :0)

<3 hannah

monday...

todays goal is to get ready for trips but my bed is warm and cosy....

TOMORROW IS MY BIRTHDAY!!!

thats all for today!

<3 hannah

sappy saturday!

i woke up today and relized it was sunday... opps...

i don't have a theme for today... so beads!!!

on some of my boc necklaces i 'feature' a bead.  most of the time i put a charm in the middle of the string and put both ends of the string back through the bead, then string the rest on the strings separately, but today i got creative and put the bead on the string then tied both ends, and strung the rest of the beads.

then the string was to lose so i tied more around the bead.



this post makes NO sense.  oh well, i gave a noble effort... to be fair it is 10:50pm and if you know me, i lose my ability to think at 9...

<3 hannah

birthday!!!

not yet, tuesday!!!

tomorrow is dedicated to getting my meds set for my 2 trips (i have less than 12 hours turnaround from getting back from denver and leaving for new orleans)
gotta figure out what cloths to bring
get some music for the trips
earn lots of beads on wednesday when i hospital hop to 3 different hospitals!

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back to my birthday... if you want to help me celebrate, consider making a donation to beads of courage.

25 dollars pays for a kid in the distance program!
on the artist gallery website you can gift a bead that will be sent to a random BOC distance kid.
if your going on any adventures this summer carry a team bead!
BOC website for team beads and donations
gift a bead


if your a glass artist, send beads in to BOC :)
-17 beads (I'm turning 17)
-pink
-cats
-unicorns
-80's themed
-pink cats
-london olympics
bead donations

Beads of courage is a special program to me, you get a bead for every medical thing that happens to you.  the beads are a great way to communicate my journey with others.

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dad and i are going to go see the pirate exhibit at the science museum

thats all for today

<3 hannah

friday!

4 days tell my birthday!!! YAY!!! can't wait!!

and my june beads came today!!!

on another note... i had a ct today, the iv went in with out trouble and i have a bruse to show for it.  then i had clinic like every friday

did i mention I'm turning 17 on the 10th?

back on track... the blood test results are in.  he tested my IGA levels, witch has nothing to do with MG, and they are within normal range.
IGA is used for some autoimmune disorders, but its not disease specific.
mom (being a nurse, sorry Dr. kiresuk, np, dnp) looks at it and goes "why did he order that?"

anyways i have a bunch of appointments next week getting ready for my trips... also my birthday is next week!!!

thats all for today!
<3 hannah

ps my birthday is next week!!!!

feeling better now...

the swelling in my arm went down and my face feels like a face again.

the test involved him placing electrodes(like the ones from an EEG) then shocking me and measuring the muscles response.  he did that on my arm and my face.  then he stuck 3 needles in my arm and put electricity through them.  owie! he had to move them. OWIE!

it was ok though.  he said i did better than most adults  :)

this is me before they started shocking my face 

this is the bead i chose :)  amplatz hospital has BOC for the onco and bmt kids.  i brought some of my beads and the child life gal i was working with went and got a few courage beads for me to choose one (EMGs are not on the bead guide so you get a special bead + it was really hard and i was super brave!)  I've never gotten to chose my own before so it was fun picking it out!

unfortunately they are probably gonna do anther one when i get back from london, but it will be under sedation

tomorrow i have my ct! LAST NEEDLE OF THE WEEK! they better get in in on the first try...

and this evening we went to dairy queen, i brought a jug of dairy free ice cream on the wim that they would make me something with it AND THEY DID!!! made my day!!!

ok thats it, ill post tomorrow!

<3 hannah

an update

i had the EMG today.

it was amazingly painful.

but nothing abnormal.
he didn't do the muscles that are most effected.

so we just wait for the results of my blood test and see were we go from there.
I'm being started on a medication today and we will see if that helps.
he also talked some about doing more EMG with me sedated

then tomorrow i have  a chest ct.
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in news besides MG i am still having a lot of pain in my belly.  i go in next week to discuss the plan from here for that.  

thats all for today.
<3 hannah

all done for the day

just got back from clinic.  have mixed feelings.  I'm happy because i think i am FINALY going to get a diagnosis, but sad at the same time.

they are running more tests, had a blood draw today, have some muscle exam on thursday (it sounds AUFUL!) and a chest CT (with contrast) on friday.

next week is busy to!!!

this is like a full time job!

<3 hannah

ps  clarification- grandma, mom wanted to write a post or two, not because i am to ill but just for fun!!!  (mom got a worried call)

beads- LOTS! ill figure it out later :)

being brave

today is the big day!

i know everything will be ok.  i know that this will be a small bump on the road and that ill go on my summer trips and have many adventures.

thats all.  ill post more later.

<3 hannah

song

tomorrow

1 pm

my mind is loud and butterflies have found a new home in my belly.

after that I'm going to a friends house to watch movies :)
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today anne took pictures of me for the thingy on mallory's blog!!! they looked really nice!!! thanks anne :)


im also eating cherries and watching true blood.  mom is working tonight (teaching from home on the computer) and dad and liz are at the batting cages so a quiet night for me.

i have to go to work with mom in the morning so it will be a LONG day for my (we have to be across town by 8 am)


ok thats it.

you are my sunshine

<3 hannah