Wednesday, 10 April 2013

Just like Christmas

Today was the best day ever.  Emma's team came to the house today to try and find a solution to the bath chair she is outgrowing.  Not only were they able to fix it so it will last her a lot longer, but they also surprised me with her new alternative seating chair/stroller!!  This will help her to have an alternative place to sit throughout the day and if we want to go outside, it wheels right outdoors.  It will be perfect for poolside, walks and in the house.  Today, we officially have everything in perfect working order!  After a very long time, she has zero equipment issues.  I could not be happier and I think Emma is just as happy with the chair as I am.  She has not woke up since she was put in it this afternoon.

I also want to do a huge shout out to President's Choice Children's Charity, as they cost shared Emma's new bed with CDS.  Emma received her new bed a few weeks ago and it has been life changing.  I am able to use her lift again, she is able to be in an upright position again, and most importantly, she can move all around her bed, safely.

Next week Emma has RCC clinic here and she will get her other equipment checked out.  We should have her stander (YAY!) and they will also check her Soft Boston, AFO's and floor sitter to make sure it is good for the time being.

We also have a Neurology appointment in Winnipeg next week, along with Metabolics.  It has been six months since her last appointment and I have so many questions for him this time.  Emma has changed drastically in the last couple of years.  Not many seizures, maybe on a good week,two?  When she is sick, it is a whole different ball game.  To give you an idea, when she was 3 months she had a 30 minute EEG and they recorded over 120 Epileptiforms. On her last EEG, they saw 2!  

On the 20th of April, we will be celebrating Emma's 6th Birthday!!! This is huge for me (and her, of course!).  I was told I probably would not see her 3rd birthday.  She is such a strong girl and I am blessed for all she has brought into my life.  This year, Icing Smiles Canada will be doing her birthday cake.  They do cakes for critically ill children.  When I saw their story on the news (just after Emma's birthday last year), I applied for a cake for her.  Since they weren't incorporated yet, they weren't sure if it would be possible.  Two weeks ago, I received an email from them and it was approved! The first cake will go out to a girl named Stephanie this weekend and the second cake in Canada will be for Emma next weekend.  I will definitely post a picture.


  1. All in time for her birthday! Finally things going right for beautiful Emma!
    As we say in Dutch; Hiep Hiep Hoorah!

  2. Wonderful news!!!
    So happy for you guys! Thanks for posting the update, and happy early birthday, Emma!