Mayo Moments

Friday, 2 December 2011

A Little Bit of Everything :)

Greetings Friends, Family, loyal readers!  No real updates today on Leah herself, but wanted to keep you all up to date on everything else that is going on with her.

ROM Update
As some of you may have noticed via Facebook, I got tired of waiting for the ROM to respond to my complaint regarding their treatment of us.  So I sent a more tersely worded email.

I am shocked and saddened to see that the staff at ROM have not yet responded to my email.  Your auto reply states up to 3 days, elsewhere on the website it was stated up to 7 days.  It has been 9 days and I have yet to hear from anyone.
Our friends, family and readers of a blog we have created for my daughter were quite distraught to hear how callously we were treated.  I had hoped to update them with an explanation but it appears obvious to all of us, that it matters little to you how situations such as this can affect the enjoyment of one family and more particularly the enjoyment of one very sick little girl.
I am truly disappointed, we had expected better from the ROM.
Kate Balint
Needless to say this got a response within 90 minutes.  From there things went very well.  It appears there is some sort of glitch with their website comments page - they didn't get the original email, but they know I sent one because I had the autoreply.  The woman I spoke to - the Head of Customer Experience, has begun to look into the incident, was very apologetic and understanding of our needs.  She has offered to purchase or rent a larger stroller/pushchair for kids like Leah who don't require a wheelchair but are too big for the umbrella strollers they loan out. 
All in all the experience taught me a few of things
  • It is easier to take a stand for my daughter than for myself - usually I don't make complaints, write letters or cause a fuss.
  • Taking a stand and making my feelings known, is not actually physically painful or emotionally traumatising!  Who knew!  I have been avoiding it like the plague for my entire life.
  • I always knew the little phrase "If at first you don't succeed, try, try again", but I don't think I had ever put it into action in this way.  Between our struggles getting a diagnosis and now with the ROM, I have a greater appreciation for such a simple yet powerful little phrase.
  • Mention that you have a blog - and watch how quickly things move along!  Again, the power of words!  :)

It is a long traumatising, aggravating, frustrating story - but basically Leah now has referrals to both the Neurology department at McMaster and at Sick Kids.  We have the appointment for McMaster on Wednesday (YEAH!) and Sick Kids is reviewing her file and we should hear from them shortly (we've heard that before!)

Neurology Appointment
While at McMaster Leah will be seeing Dr. Callen (click to see his bio).  

Is it okay to be excited(?) and nervous (nauseous) at the same time?  On one hand, we will be moving closer to a diagnosis which is good.  But on the other hand we will be moving closer to a diagnosis which is scary!  Once we have that diagnosis there is no more pretending that everything will go back to normal.  We will have to create a new normal for Leah and our family and I feel so unprepared.  

So I have been doing what I do best: RESEARCHING.  I started out with a 1 inch binder and have had to move up to a 3 incher.  My printer is gasping for a break and all the Internet browsing has introduced a few viruses onto my computer - thank goodness Paul is a computer genius!

My brain is overflowing with details, stats, acronyms and info.  Based on everything I have read (and by golly it is A LOT!), I have compiled a list of questions and things to discuss with the doctor.  

I have also created an overview of Leah and her symptoms with a timeline of her bloodwork results to give him.  I figure we have wasted a whole lot of time getting to this point and I really want to make this first appointment count for more than a meet and greet.

Normally I would have Paul, or my Mom come with us, just to have another set of ears.  Someone else to ask questions and to fill in the blanks when  I forget things later. (notice I said when not if...I know my weaknesses!) Unfortunately, the fates are working against me this week and everybody is busy, so I'm contemplating playing spy and taping a recorder on me (joking ?).  All humour aside, I am going to do my best to suppress my natural awe of doctors and attempt to take control of the appointment and steer it in the directions I want it to go and to take notes along the way.

School and Leah
Still an ongoing issue, she missed 11 days in November alone.  Her teacher finally went on her maternity leave so now she has a new teacher.  She has been filled in on the issues but doesn't seem to completely have a grasp on it.  To make things even more complicated the supply principal has been changed as well, so I have requested a sit down meeting with them both to review the protocol and update it as necessary.

She is occasionally wearing the pull ups when she feels it is necessary, and has disclosed to me that have been other occasions recently when it has happened but she was so embarrassed she didn't tell anyone.  My poor baby girl, my heart breaks for her little bits each day.  And yet, she is so stoic and matter of fact about all of this.  She doesn't whine or cry about missing out on things, going to so many appointments or having so many tests.  She makes me so proud and she makes me be stronger for her.

Alrighty, I think that is enough for today, if you made it this far thanks!  I have always had a writing/talking style more like making a short story long, rather than a long story short!

Keep the prayer coming and your fingers crossed that we have a great appointment on Wednesday!  I will update as soon as I can.

Thanks as always.

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