Prom! Anaflatic shock! Cat pics! Oh my!

  Hey there!

Well it's been awhile, and LOTS has happened.

A few weeks ago, we decided to try IVIG. Again on an inpatient basis.  We had the first does overnight Thursday, it went fine.  Second does started Friday afternoon and I had an anaflatic reaction and coded.  They intubated me up on 6th floor before taking me down to 3 (picu) were I would stay tell Sunday night.  Very scary.  After a sleep study and a ct (still waiting on results) we were let home Monday.  

Since things have gone back to "normal".  I do not have much energy,  certainly not how I expected to spend my last few weeks of high school... But as dr. K says, illness does not always choose convenient times. Grr.  Oh well.

Next thing is we met with gi.  I have an empting study on Wednesday, we also ran bloods and stool samples. Fun stuff lol. 

Lots of other appointments but I'm tired and won't go into that. 

Oh hey look I figured out how to add photos

Is that a prom pic?!? YES! It happened a week before the ivig disaster.  Soo soo soo good. :)

ARNIE!

Zombie Arnie! 

Ok I'm done now :) gonna go make a s'more over the stove and watch doctor who. Maybe some homework... 

<3 hannah

Set back. and prom.

  Hey y'all

Well today was icky.  Started out with early clinic. 

Then school for a few hours.  At the end of the day mom got a call from nuro saying we are going to stop ivig.  Even though the reaction I had was mild, we can't risk a more serious reaction. 

He is out of town at a conference but will be back early next week, so we will talk about what's next then.

That's we're we are today. 

Also prom is on Saturday. 

<3 Hannah

I have a case of the Mondays

  Hey y'all

So today was loong.  We headed to the infusion center bright and early this moring.  I started out like it did last time, about a halve an hour of per meds then ivig starts.  

Unlike last Time I had a reaction, just hives, but it could have gotten worse so it was taken very seriously.  We held the ivig and got MORE bynedril then they called the on call nuro guy to come see me as mine is out of town.  Hey decided not to finish the dose today, and as the hives went away after awhile (and stayed away) I was alowed to go home later this afternoon. 

They emailed my doc to see what he wants to do.  It may just be more per meds and a slower run time or something else, we'll just have to wait and see. 

Tomorrow I have clinic at the other hospital.

Fuuuun stuf :)

More when there is more.

<3 Hannah 

We walk by faith, not by sight

  Hey y'all,

So after meeting with the nurologist on Monday, we have desided to take a more 'aggressive' action against my mg.  I have started ivig infusions and steroid pills.  We started the steroids on a very high dose with hopes that maybe in a few months we will be able to start going down.  These meds have very icky side effects including changing appericance, bad headache, muscle acke and tiredness.  Those are the ones I've had so far, I'm sure there are more lol. 

So not really were we wanted to be, but hopefully this will start to work soon!  I just want to get back to playing tuba, as I have not had the strength to in a few weeks.  Another lame fact Is that I have a dose of ivig the day before prom :P oh well, what are ya gonna do? 

So I guess it could be worse, we are lucky to do these infusions outpatient.  I could be in a worse boat, but not gonna lie this boat feels pretty crummy right now.

In church today we sang a hymn,  we walk with faith not by sight. Sooo true this week.  Not sure we're we are headed just yet, but I'm sure it will all work out.

<3 Hannah

emg and such and such

hey y'all

its been a wile!

i had the emg under sedation last tuesday.  it did conferm the dx of MG.  it also showed a chance that i may be going into remmission, were the disease goes inactive for a period of time (or forever).

we were cautional optimistic.

untell wednesday when things started to go downhill.  i am in a bad mg flare and its no fun.  i see the neurologist on monday.

thats all for now.
hannah

woohoo!

i may still have a cold, but i just got cleared for my EMG next tuesday!

as well as the pre op we had regular clinic and PFT

thats 3 different hosptials/clinics in one day... thank you grandpa for driving me some before dad could come.

we did 3 different PFTs today
1. the one we always do, with and without albuteral
2. mip/mep to test diaphram strenght- came back on the low to middle range, got very tired towards the end, witch was noted and we need to tell the neurologist about
3. we tested the oxygen and carbon dioxide exchange witch came back normal.

now we start weaning from mestinon, to be off by sunday morning so that i have 2 days off before!

and now we wait and pray!

happy easter,
<3 hannah

april 2ed is fast approaching

hi y'all!

hope your having a stellar day!
im not so much a i seemed to have caught a bad bug.  blaaaa.  lots of cuddles with cats so thats good.

on april 2ed i have an EMG under sedation, after witch we will be looking a 'direction'.  hopefully we will get a conferemed dx of MG.

but in order to be put under i need to be rid of this cough

on friday of this week i have some PFTs and pre op as well as clinic

also liz is headed of to CANADA for a big ski race. good luck liz!

thats all for today!
<3 hannah

ps happy almost easter!
i won't be able to play tuba at church this year because i will be weaning from mention for my EMG.

also i just got back from the school band trip with my momma, super fun!
and the snow is melting, mixed feelings about that but everyone else seems happy :)

-hannnah

Healing helpers, beads, moa, spring break, Colorado and junior Olympics! Oh my it's been awhile!

Hi y'all!

Hopfully this post find you well and happy and loved :)

1. Healing helpers

healing helpers is a wonderfully family business that takes a stuffed animal and turns it into a medical doll.  You can find them here. I had a cow made with all my scars, his name is hammy and he's really cute!

here he his before his surgery...

and after...

him and i together...

2. Beads/ moa

i got to meat another wonderful beads of courage artist julie this weekend at the mall of america!!  she was lovely and super nice :)

unfortunetly i do not have a picture :(

3. Spring break /Colorado/junior Olympics

last week was spring break for elizabeths big ski race in winter park colorado
she qualified for the jounoir olympics! great job!! she did ok for the first 3 days, but on the last day she did really well and got 4th place!

we had ordered a set of team beads of courage to be sent to the hotel and they got there the night before the last race

4. 1 YEAR ANOVERIDY (spelling I know :P )
of this blog

5. The other side of my life.

i have big EMG under sedation, this will hopefully decided the best way to go with treatment and conferm diagnosis

i think thats it.

sorry this took so long, safari kept quitting on me,  also does anyone blog from iPad?  are there any good apps or ways to do it on the iPad?

<3
hannah

Yucky!

Bladder and kidney infection, hoping these meds start working soon! I've been in bed all day

<3 Hannah

Happy Presidents' Day!

Hi y'all

Lots going on here in mn!

First - our Alaskan malamute (akela) has started to Shed his winter coat! This means spring is coming (although the weather forecast does not seem to thing so)
It also means we have dog hair EVERYWHERE ahhhhhhhhhhhhhhh
It's really fluffy
But everywhere
I love our doggies :)

Second - I had been saving my pennies to get a iPad.  I can make all the text on it large so it's really good for my vision loss, I am able to read books and I can SEE what I am writing on my blog :)
I've had it since Saturday and we are inseparable! With the fm system and now this school will be soooo much better.

Third - I had pulmonolgy today... It lasted a lot longer than we thought it was gonna!
Started out with a basic PFT, the a basic with albuteral
Then we went back to see the doc
And she wanted a mif-muf PFT (don't quote me on the name...)
Basically, it's you blow into a device that measures your pulmonary muscles, then you switch so that your breathing in against it.

And just like my first basic PFT, my results were not accurate because PFT's take practice lol
My results looked like a "dead person" (I guess I forgot to tell them I am a zombie...)

My doc said that its normal and I'm going back in a month to repeat it

Third - I put in another order for beads! Can't wait!!!

Last but certainly not least - HEALING HELPERS!  I am sending in my sir hammy (stuffed cow) to get cute little surgeries just like mine! Then he will come back to me and we shall cuddle.

Check out healing helpers here - http://www.healinghelpers147.com/
Or here - https://www.facebook.com/healinghelpers?ref=ts&fref=ts

I will post before and after pictures 
I'm so blessed!
That's all for now! More when there is more,
<3 Hannah

hearing!!

hi y'all

hannah here with some cool news, i just got my school issued FM hearing system!!

how it works-
i pick up my hearing aid and microphone at the start of the day from the nurses office
then i give the microphone to my teacher

the microphone picks up only the teachers voice and sends it to my hearing aid peace (they are just recivers not true hearing aids as it was decided that true hearing aids would further harm my hearing)

at the end of class i take it from the teacher and give it to the next.

then at the end of the day i return them to there box in the nurses office

i also will meet with a hearing teacher every week


this will really help in class - we are working with our insurance compony to get a pair that i own so i could take them out of school and use them all the time, but that is taking a while so we just went with this tell we can get that moving.


wow i can hear things
so cool


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in other news
1. we saw lady gaga on wednesday.  greatest. thing. ever.
2. we had skiing sections on wednesday (wednesday was loooong!) and that was fun i got 42ed out of 156 racers
3. i have 2 tuba concerts coming up



and back to the other side of my life,  big appointments start off next week with dermatology, phulomology, neurology, othimology and audiology.


i have an EMG under sedation on april 2ed


that should be everything

hope y'all are having a healthy start to 2013!

<3 hannah

merry christmas, happy new year, and welcome to minnesota winter!

hi y'all!

things seem to be finally getting back to normal after the holidays!

we had a lovely christmas.  i was scheduled to play tuba on christmas eve but had some sort of neurological episode (more on that later).  our family from the UK came to visit for christmas and for my cousin Lindsey's wedding.  it was a lot of fun with really good food.

skiing is now in full swing, my high school team has had 3 races so far.  Lizzy has gone to about 4 USSA races this season- she's still working through changing equipment so hopefully she will be back to be a super star racer soon (not that she's not one now, she's just a superstar without any hardware :)

on the other side of my life, like previously mentioned i had an episode of weakness over the holidays.  that caused the need for a soon appointment with my neurologist.  that was on monday and was why i waited soooo long to write this lol.  we have decided to move to meds every 3 hours instead of 4.  we have also decided to move my next single fiber EMG of my face from this summer to sometime this month or next (still working on getting that set up) we will be doing this one under sedation.

lots more i could add to this, but those bridges will be crossed when we get there.


OH i almost forget, i am going to a BOC event at amplatz on friday, its called monster jam!  should be fun! keep an eye out for pictures

<3 hannah