All Leah, All the time!

The Niagara Region is certainly going to get their fill of hearing about Leah this week!

Thanks to some AMAZING leg work from my good friend (next best thing to a sister) Amanda Fox, the media in the region are suddenly lining up to run her story!  Amanda, we can't thank you enough for working so hard getting Leah's story out to the community at large.

Here is the media "blitz" lineup so far!
Monday's Tribune page A3 - awesome story about Leah!
St. Catharines Standard coming Monday afternoon to do interview and pictures
610CKTB - on air telephone interview at 1130am on Tuesday morning
Niagara This Week interview and pictures Tuesday afternoon
CHCH contacting us Tuesday or Wednesday!

I will be sure to post the links to the stories as I find them.


Thanks to the article in the newspaper this morning, Leah's campaign has already received online donations from people as far away as Ottawa!

As well, I had a very informative phone call from a Welland woman who has been through all the same struggles as Leah while she looked for a diagnosis and finally found it!  I walked away from that phone call not only with lots of information, but with hope as well.

Benefit for Leah Update

Only 18 more days until the Benefit!  So little time and so much to do!


The tickets are out in the community getting sold!  Thanks to everyone that has already purchased their tickets!  There will be a limited amount of tickets available at the door, so please purchase your tickets in advance if possible.


Today Leah and I drove around the region doing "Benefit" stuff.  We picked up the newly printed tickets and delivered them hither and yon.  We gathered gifts and prizes from many generous businesses, we purchased the 50/50 tickets, the beverage tickets and other necessary items for the big night.

******SNEAK PEEK ****** 

two prizes that are up for grabs the night of the benefit

• for the guys a gift certificate for a detailing package courtesy of Henley Honda valued at $250!  
• And for the ladies.....a Coach purse valued at $399!  

Lots of items to pique your interest, keep an eye on this blog for more!


Remember, there are 6 easy ways to purchase your tickets

• Tickets can be purchased for $10 each by using the Donate button at the top right and putting in the message section how many you would like, we will have them waiting for you at the door the night of the fundraiser. 
• You can message me here via the blog and I will arrange to get them to you
• Via the facebook page at www.facebook.com/LookingForAnswersForLeah
• You can contact me via email at katebalint@yahoo.com
• In person from any of our friendly helpers selling the tickets out and about in the community
• At the door, the night of the event

If anyone would like to take some tickets to sell to their friends and family please message me, I would be very happy to drop some off to you! 
 

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.  

The Support just keeps pouring in!

Just when I started to feel overwhelmed by the amount of work still to be done, the days flying by and the uncertainty of it all, I received a few text messages.

1st text - Kays Variety on Thorold Rd in Welland, has agreed to place a Loonies For Leah jar on their counter!  Thank you so much!

2nd text - My good friend Alex took bags of Leah's Angels to work with her, and she sold a bunch!  So a big thank you to the staff of Re/Max Niagara Realty.

3rd text - My husband texted me to let me know his employer Telecom Computers has offered their help as well!  Thank you Mr. Davidson and the employees of Telecom Computer!

All of this plus the offers of donations for the garage sale, requests for angels and the emails and messages being sent to us offering help and support - simply wonderful!  We are truly blessed!

Watch for Leah in the news!  I am lucky to be friends with the owners of Chimpanzee - a creative communications agency.  

They have very generously offered to assist us with a "media campaign" to get Leah's story out to the public.  With their help, we will be able to reach a broader range of people and companies for assistance, but also, just as important if not more so, it will get Leah's struggle with the health care system into the news and  get people talking.

Fundraisers gearing up!

A wonderful family friend has approached all the Catholic high school principals in our area asking them to participate in a Loonies for Leah event.  The event could be a special dress down day, a "buy out" day where they get to pay money to get out of last period, or something else that they come up with.  She also reached out to the principles of our family of Catholic elementary schools asking them to participate somehow too.  As well, friends of hers have offered to have Loonies for Leah jars put at their businesses!  So I am creating a flyer type letter to have along side the jars and will be sending along copies of the business card I created encouraging people to come to the website.

A wonderful little girl named Gina from Leah's school will be selling her handmade crafts at a garage sale this weekend with the proceeds going towards the Minnesota trip.  God continues to bless us with wonderful friends and we are so thankful!

Everyone in the Niagara area, please keep June 16th available, my mother will be hosting a fundraiser garage sale, lemonade stand, Leah's Angels table and (possibly)BBQ.  If you have clutter lying around your house that you would like to donate towards this event, please let me know, I will pick it up or it can be dropped off at my house.  We will also be debuting these banners that I made at Vistaprint.ca  I LOVE that site!  :)

We are heading to Minnesota!

I have submitted an appointment request to the Mayo Clinic!  And even more crazy?  They responded with a request for all of Leah's medical records and test results!  And even crazier???  We have an appointment date! Praise the Lord!  His hand is felt in all we do.  Thank you everyone for the prayers you have already sent up on our behalf.

Leah's first appointment with the Mayo Clinic in Rochester, Minnesota is August 7, 2012!  (Yes THIS year!)  They say to expect a stay of 5-8 days.  She will be considered an outpatient though so she will be able to come back to the hotel room with me each night.  From the letter they sent...

Length of Stay: The average length of stay for patients to complete a routine medical exam is 5 to 8 business days, but the actual time spent at the clinic will depend upon the complexity of your case and appointment availability at the time of your appointment.  It can be difficult to predict in advance.  In some circumstances, your evaluation, surgery or treatment may involve a return visit.

She needs to show up that first morning having fasted and they will get going right away.

What to Expect at the Appointment:Your child's Mayo Clinic visit will begin with a thorough evaluation of the medical concerns. The primary physician, who will be responsible for coordinating your child's care, will order additional tests or consultations with specialists, based upon your child's medical needs.  After testing has been completed, the physician will review the results with you and make final recommendations.

Now our biggest obstacle is arranging the finances.  Please, please, please continue to keep her in your prayers.

Dexadrine

Dexadrine (Dextroamphetamine) is a powerful psychostimulant which produces increased wakefulness, energy and self-confidence in association with decreased fatigue and appetite. It works primarily by inducing the release of the neurotransmitters dopamine and norepinephrine from their storage areas in nerve terminals.  (wikipedia)  It is used with great success in treating ADHD, narcolepsy and chronic fatigue.


Well whatever it does and whatever it  is, it is certainly working.  As long as Leah takes the pill in the morning and then again after her nap at school she is able to stay at school.  If, like this morning, her dose is forgotten, the school is calling by about 10am.


As for noticeable side effects for Leah...have you ever seen the movie Hoodwinked?  She is a little bit like the character Twitchy on caffeine.  Chatters a mile a minute about the minutiae of her day, is restless and amazingly enough quite distract-able. This gradually wears off by about suppertime and then shortly after that she is ready for bed.

Her morning dose keeps her going until about 11, then she is able to take a nap at school, eat lunch and get her next dose.  It hasn't affected her appetite too much at lunch as she gets to eat prior to taking another one.

On the weekends and other school holidays, she does not get the meds.  This does result in episodes and extra sleepiness on those days but we believe her body needs a break from the medication and we want her to be eating as much as she can on those days.  Currently I do not plan on keeping her on it over the summer break.  

In less than a month we finally get the appointment with the Endocrinologist. Our success with the Dexedrine might be the key we are looking for in getting a diagnosis.  Hopefully it will help him at least narrow down the possibilities.

Small wins

Man!  Does this ever sound familiar!


http://www.myfoxdetroit.com/dpp/news/deena_centofanti/yes-kids-can-get-multiple-sclerosis-20110317-wpms


If you listen to the interview, this family went through so much to finally get a diagnosis for their daughter.  I have seen their story on other websites and it has always struck a chord with me.  Why does it have to be so difficult?


On the diagnosis front we haven't made any progress.  In fact we are stalled until the Endocrinologist appointment in May and then to the Neurologist again in July.  ARGHHHH - that is so far away!


On the school front - well currently we are holding our own.  We had our meeting and it was agreed that the school would begin to send work home for her when she is away - why that was such a big hairy deal I have no idea, it used to be done automatically.


The educational resource teacher administered the Kaufman Test of Educational Achievement (KTEA)

The KTEA provides a individually administered measure of educational achievement for those aged 4 years 6 months – 25 years (comprehensive form) and 4 years 6 months – 90+ (brief form). The test can be used to identify an individual’s strengths and weaknesses in three key domains: maths, written language and oral language. It can also be used as part of a comprehensive psychological, psychoeducational or neuropsychological test battery which can enhance understanding of the individuals total functioning.  

She performed exceptionally well (90-97th percentile) in everything except written language in which she was average.  In their eyes, this meant that she was not having any trouble keeping up with her classmates and that she was handling all the absences very well.  According to her teacher (who has greatly changed her tune since the parent teacher meeting we had) "she is so smart!  I tell her what she has missed, review it quickly and over one recess she is all caught up!"  We reminded them of our concern regarding her foundational studies and they brushed us off.  I maintain that the main benefit of this test will be in using it as a benchmark and next year I will request that it is done again to see if she gets the same results.

Another win for us was finally getting them to agree to a rest period for Leah during her lunch time.  This was a hard fought battle for us, that ultimately required a doctor's note and a great deal of stubbornness on my part.  Ultimately what matters is she now has a place to lay down and take a rest while the rest of the school is out playing.  Then when they all come in, she rejoins her class and they all eat lunch.  We set her up with an amazing little folding cot, her prayer quilt, a little pillow and a tiny little sleep mask!  It all folds up, wraps with a bungee cord and pops into a locker in under a minute.  We practised at home.  In case anyone is wondering, the cot is a complete and total thing of beauty!  So easy to use, lightweight but sturdy, folds up small and totally portable, comes soft sided carrying case with a shoulder strap - just like the lawn chairs.  Can be found at your local WalMart for $24.99 and comes in pink.  There is also a version that comes with a little attached sleeping bag but I think you have to specially order that one. 

Leah says she is sleeping during this rest period and she hasn't come home yet so <fingers crossed> it is working!

What we didn't get was and sort of educational help from an EA or an IEP.  The EA issue we will re-address next year after another assessment is done.  The IEP - I haven't given up that battle yet!

Leah came home today, a little quieter than normal, seemed a little sad.  When I sat down and talked with her, she said it was because she hadn't done very well on a math quiz.  She brought it to me - she had gotten 5/12 and 3/15 on double digit subtraction - a new skill this year.  We talked about it, I kept it low key, I wasn't upset with her and decided that she should rewrite the questions that she got wrong and do them again for practice.  A little while later I went in her room to check on how she was making out....I found her sitting at her desk sobbing.  My heart just shattered!  She was sobbing because she had no idea how to do the questions.  We settled down in the kitchen with Bethany and between us, a pile of pennies and lots of fingers, we walked her through it.  It definitely took longer 15 mins (length of recess) for her to understand it and I was livid by the end of it.  THIS is exactly what I have been trying to avoid for her.  This is the type of problem I have been warning the school of.  Why is it so hard for them to understand and when did they stop caring?

Back from the Paediatrician's Office

Our pediatrician is back from vacation - finally!  He has been my children's doctor since our oldest was less than a year about 12 years.  We bring him cookies at Christmas, the kids draw him pictures and send him cards through out the year.  We all love him.  Today....I could strangle him!

I just feel like he should be doing more, feeling the urgency like I do.  I want him to order every test he can think of, and when he runs out of those, find others.  I want him to figure this out and get us on the road to normalcy.  I want him to feel this bone-deep dread like I do.  Unfortunately, he isn't, he won't and he doesn't.

He agrees that there is something wrong, that her tests are coming back wonky - but not wonky enough to point us in the right direction.  He refused the MRI AGAIN, saying that he would leave it to the neurologist to determine if one is necessary or not.  He did however, resend the referral, send copies of her bloodwork and copies of her older brothers bleeding disorder info.  He itemized by day her symptoms and complaints, with the hope the info would expedite the appointment.  What he won't do is order any other tests, xray/US her stomach again or change his "wait and see" approach.

The Consulting Paediatrician from Hamilton has come through with an appointment for Leah for 2:30pm today.  We will be going to see her.  I requested copies of Leah's results for the last 18 months to keep on hand for emergencies.  I will bring her a set to review and hopefully get a second opinion.

Keep your fingers crossed for us!