Update from the Mayo Clinic Day 1

Hello from beautiful Minnesota!  I wish we were here sightseeing and heading out into the wilds because it all looks so wonderful!

We had our first appointment today, we saw the doctor that will be overseeing her case.  She is really nice, and we did a very thorough and comprehensive medical history and physical exam.  

We did agree to cancel some of the tests that were repeats or deemed unnecessary after our consult, so our estimate has dropped - thank goodness!  Now we will just have to wait and see what else gets scheduled based on bloodwork and the remaining tests.

During the physical exam she noticed goiter and has suggested Hasimoto's - she is curious why, based on Leah's history of elevated thyroid related tests results and the goiter why Endo would have said no endocrine involvement - also questions the specter of possible future autoimmune issue as suggested by the Endo back home.

Also suggests a possible Migraine variant as reason for the "episodes"- we have kept the Neuro consult, he is a sleep specialist as well and might have some greater insight into the overwhelming tiredness.

We are now #6 on the waiting list for Ronald McDonald house, possible to move tonight, more likely tomorrow, next day at the latest.  We are paying the reduced compassionate rate of $60/night at our current hotel and have a fridge but not a microwave. There is a small convenience store nearby but no grocery store.  They run a shuttle to Walmart on Wednesdays, so we will head over tomorrow to pick up some groceries and fresh fruit to keep in the room with us.  

We met with the Concierge Service they offer for International patients and we now have a list of low cost things to do in the area to keep her busy,  I think we are heading over to the playground/pool tomorrow afternoon after WalMart.  There is a pool at this hotel so we will be up there tonight and then have an early bedtime.  Tomorrow's first appointment is 730am.

Meals are a little difficult as it is a rather artsy downtown area without fast food joints :)  There are pubs, wine bars and steak houses ($$$$$) but having trouble finding small restaurants or diners.  We found a nice little dutch place (Pannekoken! - baked and stuffed pancake!) but can only eat there so often!

The hospital is amazing!  There is no such thing as business casual - even the volunteers wear ties.  Clerks at the medical desks wear black pants and crisp light blue button down uniform shirts.  Everything is handled in an orderly, efficient and patient centered manner.  Every single person we have come in contact with have been helpful, kind and polite.  We have heard a few people with the classic stereotypical Minnesota accent but not too many.  :)  

On the whole, other than the very long and involved process of getting through the admission and payment process this morning, things are going very well!  Leah is in good spirits and feeling good, she enjoyed the flight and tolerated it well.

Well I have obviously spent to long on the computer, I am being pestered to head up to the pool!

One Day to Go!

As I sit here at the kitchen table procrastinating sipping my cold coffee, staring at the pile of ingredients waiting to be artfully blended into some fabulous food for tomorrow; I can't help reflecting on the past 57 days.  What a wild ride!  So much has happened, so much kindness has come our way, so many tears have been shed and so many thank yous uttered.

In 57 short days, we have accomplished so much and none of it would have been possible without the love and support of my family, friends and community.  It feels like I have said thank you a million times in the last 57 days, but I can't say it enough, there aren't enough words in the entire world to express our gratitude.

On day 58 we will be busy at Summerfest in Pelham and the Summer Bash Fundraising Benefit for Leah, and after that there will only be 15 days until Leah and I board the plane to Minnesota.


Fifty-seven days ago, our goal looked impossible, now it is within reaching distance and we couldn't be more grateful.

Leah

Leah is many things; a daughter, sister and best friend.  She is a loving granddaughter and the annoying little cousin.  She is my Lou-Lou Belle, her daddy's Little Rose, Doodlebug to her older brothers and Yee-ah to her little brother.

Leah is a gymnast who can no longer train, an above average student who can barely make it to school, Leah is a patient who baffles her doctors.

She is sweet, quirky, kindhearted, quick to love and slow to anger.  

Leah loves having her back tickled, a good cuddle, great books and girly movies.  Her favourite colour is gold but also loves anything pink or purple.

She hates needles, bees, soup, applesauce and mushrooms.

Leah is my baking helper, a great swimmer and a trampoline fanatic.  Her side of the bedroom is never clean, her bed is filled with favourite toys and possessions, her desk is covered with drawings, colouring books and search a word puzzles.

She loves to wear dresses, but also enjoys rough and tumble, she has holes in the knees of most of her tights, leggings and pants.

Leah plays hard when she can and mourns for it when she can't.


Leah has an infectious giggle, a quick laugh and a silent cry that can break my heart.


In all things she is brave and strong, but she is also only 8 and is scared of the unknown.


Leah is all of these things an so much more.  But in some ways, over the last couple of years, she is less.  Her smile is not always so quick, she is forgetful, confused, so easily fatigued and therefore not as engaged in her own life.  And while she doesn't complain, she is missing so much of what it means to be a normal child, her world is shrinking and her experiences are being limited.


My greatest wish is the Mayo Clinic will find that magic answer for us, that when we leave, we will take with us the knowledge that will enable her to be a normal little girl again while she still is a little girl; time passes so quickly, and it is something she will never get back.  

SAVE THE DATE!

July 21st is the date for Leah's Fundraising Event!  There will be food, drinks, games, silent auction, 50/50 tickets.  We are looking into music and all sorts of things to make it a "must attend event!"

More details will follow soon - but mark July 21st on your calendar!

Our First Donation!

A very big thank you to Darlene Lisle for being the first person to purchase a Leah's Angel!  In fact she bought two and gave a very generous donation, thank you again!

Leah's Angels are now officially on sale!  If you would like some to sell to friends, families, coworkers, please let me know.  We currently have the packaged into baggies containing 10 small angels and 5 large angels, their suggested donation is $1 and $2.

Due to some "extreme couponing" on my part, I have managed to accumulate 100 hotdogs, about 100 cans of pop and 100 freezies and fudgesicle-freezies (for under $30) to sell at the Garage Sale on June 16th!  So now I just need someone to donate the buns and condiments and we will be all set!  Anyone have connections with a grocery store??

Our middle daughter Hannah has been working with her friends on selling crafts at school and she is proud to announce that they have raised $36 so far!  Special thanks to Hannah, Annalynn, Gina, Camille, Katlyn, Sierra, Annalise, Avalon, Mikeala, Taylor, Erin and any other friends I forgot to mention!  :)

And to our wonderful friends and family who are working so hard to spread the word among their friends, you have our eternal gratitude!