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.

Friends are Wonderful!

I have heard it said, that you can't develop true friendships online - but I would have to disagree.  Being a busy mom of 5 who also happens to work full time, online friendships are sometimes the only ones I do have time for!

I "met" a wonderful lady named Stacy many moons ago via an online forum for moms in the Niagara Region. We both participated in the discussions there, maybe noticed we had some common thoughts and ideas, maybe chatted from time to time.  When she began her own photography business Stacy's Creations Photography all of the ladies on the forum for so excited and happy for her!  And many of us, myself included came out to support her and have our family pictures taken and to finally meet face to face.  

Of course the pictures were wonderful and every time we have gone back they are even better!  And I made a great friend in the bargain.

Well now, she has come up with a way to support me and my family.  Stacy has very generously offered to donate the proceeds of a fundraiser to Leah and another little girl.  Stacy will be booking "mini sessions" to occur on August 3rd in Chippewa Park with all the proceeds to be split between the lovely OJ and my Leah.  Take a look at the poster below and please book a session, I promise, you won't be disappointed!

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!  :)