MJ Update - Vacation Time

[Guest guest]

Hi everyone:

 

Happy Friday the 13th to you, hope it was a good day

and not bad or unlucky! 

 

I am officially done with summer school (shouting hooray) and am

off for the rest of the summer.  It

didn’t turn out to be as bad as I thought. 

The last 10 days I spent more time doing website updates than actually

school work.  I believe I got all A’s in

my classes.  My speech class I got a 113

out of 100 total points!  LOL!!!  My music class went well too, I had 4 tests

and got a 94, 96, 100 and 100’s on them. 

My culture class had 3 tests and I got all 90’s in that class too.  It

wasn’t bad at all, but I’m sure glad that

I’m done.  I was ready for vacation!!

 

I had my follow-up with Dr. Mueller today.  Lucky or unlucky me!  LOL! 

It wasn’t that bad.  A month ago,

my sputum culture tested positive for a bacteria, stenotrophomonas maltophilia,

and I was placed on Levaquin for 2 weeks. 

Guess what, I should not have taken Levaquin so I am now on Bactrim for

2 weeks.  This has become my antibiotic

summer.  SIGH!!  I still have atelectasis in my left lower

lobe and it isn’t coming out. I did wear my new shirt for Dr Mueller that I

made, it says, “I’m not trying to be difficult, it just comes naturally!â€

 Dr. Mueller wants to do a broncoscopy but I

certainly do not want to – that means intubation.  I do go see Dr. Bach on

July 23rd

so we will be certain to discuss this issue. 

I also have to have an EKG this summer and then an echocardiogram when I

come back in September since I was having issues with meds and my heart

rate…just

to be safe!    

 

Anyway, my summer is going to be busy.  I will be trying to use every moment to

have

fun.  Sunday I am off to GJ’s for a week

to chill out and relax, or try to as we have made many plans.  Tuesday

and I get to do something really

special.  We get to hand deliver a Cole’s

Quilt to a friend of ours.  Our friend

Leah, who we spent the weekend with in Cincinnati

is getting her special quilt and we get to take it to her.  Also on Friday,

they are premiering our video

that I participated in, is being shown on campus.  I can’t wait to see how it

turned out and

before you ask, I will try to get a copy of it so I can share it with

everyone!!  LOL!!

 

So my busy schedule is GJ’s next week, drive home to NY on the

21st and 22nd; go see Dr. Bach on the 23rd,

Dr. Proskin sometime that week also.  On

July 28th to August 6th, we are off to spend the week

with good friends, then spend time at home (mostly going to Starbucks so I can

work on websites if possible since I can’t do it at home) and then go camping

at Harkness the 16th to the 20th of August.  The 21st and 22nd of

August we are driving back to Ohio and

’s mom is flying out to Ohio

to spend a few days with us!  We are

excited.  I will probably spend time at

GJ’s before moving back to campus. 

Classes start on September 4th.  I am not sure how much time I will have

online this next month as my computer doesn’t have dial up capabilities and I

will only be online if I can get some wireless signal at home or go to

Starbucks.  That is about all for

now.  If you need to get ahold of me,

give me a call, we will have our cell phones on all month.  Big hugs to

everyone and hope you all have a

great rest of the summer.

 

Prayers for all my friends who need them, especially my friends

with cancer. They are all having a rough time right now and could use the

prayers and good thoughts. Also prayers for my SMA friends.

 

Quote for the next while:

It is good to have an end to journey

towards; but it is the journey that matters in the end. ~ Ursula K. Le Guin

MJ Purk

SMA type I+, 19 years old

“Our deepest fear is not that we are inadequate. Our deepest fear is that we

are powerful beyond measure. It is our light, not our darkness that most

frightens us. We ask ourselves, Who am I to be brilliant, gorgeous, talented,

fabulous? Actually, who are you not to be?†~ nne on

Ask me about B4SMA – Blankets for SMA kids, Our-SMA-Angels websites, and

Personalized Merchandise! See the links below for more information!

www.our-sma-angels.com/b4sma - B4SMA, My organization

www.our-sma-angels.com/Margaret - My website

www.cafepress.com/b4sma - My Shop

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