im backkkkkk!!!!

oh my, were to begin....

as some of you may know, my grandfather passed away 2 weeks ago today.
in all that madness, we took home his massive (160 pound) alsken malamute

get akela (gaps dog) and turbo (our dog) to get along was some feat, but its a lot better now :)  they get along when they want to.

we had a good time at my moms parents house with the large family (38 people i think?)  lots of fun :)

on the other side of my life, saw the eye doctor monday still no driving, starting drops again.  saw neologist last week, same old there.  had a CT (with contrast :P )
tomorrow we se doc sing to see if i can SKI (team starts thursday :) and also more shots!! eek i don't like that!!! LOL
then friday i have a special hearing nerve test and monday ill be fitted for my hearing aids.


ALSO I GOT MY OLYMPIC TEAM BEAD AND ITS SUPER COOL :)

thats all for now,  hopefully not to long tell the next one, but life is crazy so no promises :)

<3 hannah

have y'all seen this :) makes me smile

kinda a sappy saturday

hi y'all!

today was a long but good day, had orchestra rehearsal, senior pics and now I'm at my gpas house.

this week was fun, homecoming was really good.

on top of homecoming, i had many appointments.  I'm getting hearing aids, have the fitting in november  i also saw ENT, they did a scope (note mom did not tell me this was happening -_-)  but it was ok (they numbed up my nose and then put a camera stick down it- same path as an ng tube, but only to my mouth i got to see my vocal cords!), just a bit uncomfortable.  i have what they though i have and its easy to treat :) VCD/PVFM
i also had OT, looks like i will be in OT tell late december

next week i have my eye doctor, dr sing, reumatology, ot and dr chris

liz and i have monday off of school but i have docs :P

IN EXTREMLY EXSITING NEWS (lol soooo many spelling erors) MY DOCTOR AND I WERE SELECTED TO RECIVE A TEAM BEAD CARRIED BY AN OLYMPIAN!!! i got the email today.  how that worked was i wrote a short nonimation on how my doc shows olyimpic spirt with my care <3 they got reviewed and we were chosen :)

so today has been good!
annnnnnddddd SNL is on tonight- I'm tired and won't be staying up for it but ill watch it tomorrow :)

thats all for today!!
<3 hannah

beads i made!!!

look!!  the wight one is the first i made :)

these beads were sent off to boc and some other people as special gifts <3
i kept one for myself to :)

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on the other side, i had OT this week

it was my eval for restarting.  i am unfortynetly a lot weaker that last time i started OT :(  i start weekly therapy next week, they also want me to meat with PT again :( :(  

and they are talking about braces for my wrists 

thats it for this week, next week is quite to

but the week after is crazy!!! lots going on medically, hopefully it will all go well!!!

also could you pray for my grandpa tom, he is in the ICU and very sick

I think thats it, ill try to post more often ( london pictures?)

<3 hannah

update!

hey y'all!

i saw dermatology today to talk about my hair loss

ick!!!

the back spot has some GROWTH its all soft and fussy 

she said that it is alopecia and started me on a BUNCH of medication, plus some for other skin stuff as well

the nurse that gave us the scrips says i get the award for the most scrips from one appointment!!

then i start OT again next week

and I see rumatology, adiology, ENT, GI, neurology... in the next month gotta keep healing!!!

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in other news...  my uncle finished an ironman triathlon this sunday!!! congrats eric!  

in his next one he has to raise money for a charity and he chose Beads of Courage in honor of me!!! :)  soooo cool!!

i think thats it for today!

<3 hannah

week 2 :)

i am having a GREAT time here!!!  my 2 little cousins are too cute!!!

we droped verena off at the airport yesterday :( that was hard, i don't know when i will get to see her again.
after that yesterday i stayed home and read a book i got on the 6 wives of henry the 8th :) my FAVORIT story of all time!

in not so happy news (besides verena leaving) i have gotten a uti :P its a lot better now though.

i also have been having nightmares about my upcoming tests, one of the things that has helped me is thinking of what beads i will get, and because the tests i will have are not on the usual bead guide, i will get a courage bead!  and because i spend way to much time on the internet i found this bead

and it is perfect. so this little guy is in the mail on the way to my house for me when i get back. then he will come with me to the hospital and make me smile when i feel bad from the sleep medicine :)

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today we are going to the post office to send out the postcards that i wrote!

that all for now!

<3 hannah

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!

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