Update on McMaster Stay

We have been at McMaster for a week now, still no real noticeable episodes or events - noticeable meaning can't be tracked by the VEEG.  Unfortunately, this is a very unrealistic setting for her and does not provide the external stimulus usually required to "set her off".

We are having trouble with the VEEG unit, she can no longer unplug from it to use the washroom because it won't reconnect properly so we now have a commode chair in the room with us.  The test is only designed for 4 days, so we are having trouble with the electrodes on  her head.  Between some sweating and her natural body oil accumulation over a week, the adhesive is starting the come away; this causes interruption in the readings and therefore is not a good thing.  So I have re-wrapped her head a couple times, the first time, it eased it's way up and off.  The second time, I used a lot more gauze and tape, and to ensure it really stayed, I also wrapped it up and over her head and under her chin!  I don't want us staying over the weekend to be wasted because of faulty readings!

She has had an ECHO, ECG and has the holter monitor on.  We have had a consult with a Cardiologist and at this point she doesn't believe that there is any cardiological issues.

Leah has been a very lucky girl, she has been visited by her best friend twice!  Megan came again today to visit and she brought her sister.  They are having a wonderful time playing board games, being silly and just playing.

Her daddy has come to stay overnight, her siblings have come for a visit and the girls are staying with me at Ronald McDonald house so they can spend some time with her every day.  Even her Auntie Anne came for a visit and to spend the night with her.  That was a real treat!

 Going forward, there has been some discussions regarding plans for Monday.  When Paul stayed with her, he spoke with the on-call doctor and requested a repeat Lyme Disease test, a follow up MRI and another look at MS.  It sounds as if we will be getting a visit from and Infectious Diseases Specialist, a follow up visit from the Cardiologist and the possibility of a lumbar puncture.

Leah's McMaster Stay

I am not sure if it is coincidence or due to Leah's media attention, but tests that were going to take months to arrange are happening this week.  Leah and I have been at McMaster since Sunday night.  She is currently hooked up to a VEEG or a Video ElectroEncephaloGram.  Unfortunately, she has not seen fit to grace us with an episode of any consequence.  Of course the set up is working against her.  She is confined to bed in a climate controlled room.  Her biggest stimulation is when she is beating the pants off me at Snakes and Ladders.  (I should never go to Vegas, the dice and luck are not on my side!)  We are still waiting to hear when she will be getting her Echocardiogram and wearing the Holter Monitor again.

The doctors were hoping to capture at least two episodes on the monitors, they have been able to watch one tiny one - basically she was very cold, dizzy and blurry, but still conscious, speaking and aware.  It was so minor that she didn't even need a nap afterwards.  They took a quick peek at the recorded info but nothing jumped out at them as registering abnormal brain activity or even abnormal heart activity.  It will all be downloaded on a daily basis and then "read" by an expert.  The final report will be available in about 2 weeks - but I am not holding my breath!

On the bright side, they are treating us very well, the food is good, the nurses and support staff are fabulous.  Since she can't leave her bed the Child Life staff have been coming by to see her a couple of times a day to ensure she has enough to keep her busy. Hospital volunteers will even come and sit with her for awhile. Thanks to them I got to have shower and throw a couple of things in the washer without feeling like a bad mother for leaving her alone.

Did you know that Ronald McDonald House via the RMHC Family Room also provides basic toiletries and laundry facilities for parents staying with their kids!?!?!  How awesome is that?  Need a shower but forgot to pack things like shampoo, conditioner and soap - never fear, the volunteer staff simply pull out a big container of hotel/sample bottles!  Running out of clean underwear and need to wash a couple of things, no worries, throw them in the washer!



So if you are out shopping and happen to run across a fabulous deal, keep the Ronald McDonald House and Family Room in mind.  They have a Wish List that they keep up to date.

And did you know that Julia's Run for the Cure will be taking place on Merritt Island on July 29th?

Join us at Merritt Island in Welland, Ont. on July 29, 2012 to run or walk 5km in memory of Julia D’Innocenzo. Julia suffered from Leukemia, and on September 12, 2009, after several drug treatments and a brave 11-month battle, the “Froggy Princess”  left us for a better place. The goal of Julia’s Journey is to celebrate the life of a hero, as well as to support the charities that were helpful to Julia and her family during her illness.

Ronald McDonald house has been such a blessing for her family, ours and so many others!

The Benefit

In a word, the benefit was AMAZING!

I was having nightmares that no one was going to show up, that I would be staring at my family all night and we would walk away owing money instead of raising any.  I think that type of stress is normal for anyone planning a big function, but it was really starting to wear me down.

The day started early with errands, shopping for fresh items and cooking.  I was totally on schedule and just rocking in the kitchen when CHCH News called requesting an interview for the afternoon!  ACK!  Really there was no time for it, but how could I turn it down?  So, as wonderful as the interview process was, and as sweet and understanding as Lauren Pelley was, it totally messed with my entire schedule by about 3 hours!

But as it always happens, with a lot of hard work, and the hard work of others, everything came together in the final minutes before 7pm.  The prize table looked fantastic, the decorations were up, the banners were hung and the games tables were ready.

We don't have a definite number for attendance but I am estimating we had approximately 150 people come and go through out the night.  Not to mention the wonderful people who stopped by just to drop off a donation!

On behalf of Leah, Paul and the rest of our family I would like to express our gratitude to the following people:

The Celtic Club personnel were wonderful!  Thank you so much for all of your help and assistance.  We could not have been as successful without all of you.

To Scott Reid and Niagara Event Consortium, you did an incredible job with the music, thank you for volunteering your time.

To Jeremy and Chris from The Black Flies, the sets you did were fantastic and such a wonderful addition to our night, thank you for coming in and helping us out.

To our boys Christopher and Matthew, having you there, working so hard to help your little sister was wonderful, thank you!

Teresa, you rocked Crown and Anchor!  Thanks for running that for me the entire evening and all your help with set up.

Amanda B. - Waitressing may not be your career path but you are a pro at selling Jello shots!  Thanks for taking that job off my hands, you sold them all and that was excellent!

Andrea Hominuk - thank so much for helping us transport everything over, working on the prize table and running the Toonie Toss, your expertise and assistance was greatly appreciated!

Tammy Baker - The way you effortlessly coordinated all aspects of front door ticket sales was awe inspiring!  Being able to leave it in your extremely capable hands left me free to attend to the thousand and one little details that cropped up.  And thank you as well for coming early and helping to set up, assisting with organizing the prize tables and everything else you did!

Kris and Bernie Tessier - as always thank you so much for helping out in all the areas you do.  Bernie you ruled the poker table!  People didn't want to leave you, they were having so much fun!  And Kris, I truly appreciate the last minute run home and all the effort that you went to for us.  The Plinko game was a hit because of your wonderful influence!

To Anne and Amanda, I know you were run ragged and yet you still ended the night with big smiles on your faces!  If I needed help of any kind you were right there, anything you two could do to make my life easier, you did.  Thank you!

And to my wonderful mother Marty, you stressed and fretted right along with me, we drove each other crazy, but together we really made it work.  For everything you did to assist me in making the benefit a success I thank you from the bottom of my heart!

And of course, to everyone that took time out of their busy schedules to come to the benefit, thank you!  You all made it a resounding success and with your help we are so close to our fundraising goal!

And the tally is......

With the expenses paid, and some outstanding ticket money.............

The tally for how much was raised at the Summer Bash Fundraising Benefit for Leah is.....

$3462.25

Thank you to everyone that came to the benefit, whether to stayed for five minutes or five hours!

More on the benefit later, I need to get to bed!

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 in the Media

updated to include CHCH news story

For those of you who have not yet seen the articles here are the links that I have been able to find

St. Catharines Standard
http://www.stcatharinesstandard.ca/2012/07/17/looking-for-answers-for-leah

and the Niagara Falls Review ran the same story
http://www.niagarafallsreview.ca/2012/07/17/looking-for-answers-for-leah.

and since I can't seem to find an online version of the story in the Tribune here is a copy (I hope it looks better on your computer than it does on my laptop screen! )

Niagara News in both St. Catharines and Welland will be printing their story in Thursday's edition.

I chatted on air with Tom McConnell on 610CKTB on Tuesday morning and we have just found out I will be chatting with the Giant FM morning show team on Thursday morning!  Good golly all this may start going to our heads.  What would my diva demands be probably something to do with chocolate, and Leah?  I think her diva-ness would show itself in requests for manicures!

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.