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!

Follow Up appointment

Well today's appointment kinda stunk.

We waited so long for today - 7 months!, gave up Leah's chance to go to the cottage with the family, pinned our hopes on getting some sort of new information, but nothing, nada, zip, zero, bubkis!

Basically we are back to square one, the neurologist is stumped, he is setting up appointments with a Paediatric Cardiologist, an ultrasound of her heart (echocardiogram), a week's hospital stay for a VEEG-Video EEG Monitoring, another kick at the can with a holter monitor, and possibly some Autonomic Testing to try and induce an episode.  When I asked how soon ANY of this was going to occur, he replied MONTHS and to schedule our next appointment for after all the tests and appointments were done.

So basically, the plan is this, wait, wait, wait, and wait some more.  Have a test.  Wait a bunch more, have another test, wait a whole lot more.  Meet with the Cardiologist to tell him/her everything we have told all the other doctors and specialists, schedule some more tests.  Wait, wait, wait, wait some more.  Have another test or two.  Make an appointment, wait for 3-6 more months, have the appointment.  All in all it will probably be another year at least before we see him again.

This is why it is so SO important that we get Leah to the Mayo Clinic.  In one week she will see doctors and specialists from a variety of disciplines, she will be tested in so many different ways, results read and acted on immediately, our scheduled appointments adjusted as needed to see who we have to see while we are there.  In 8+/- days we can accomplish what it will take months or years to accomplish here!