A New Found Freedom

30/08/2017 21:18

It is funny as things settle back to routine how fast time goes by.  Sadie has continued to have her seizures under control, by putting her back on the meds she was on prior to her relapse.   It is interesting this time around because we had a break in time for a year with Sadie on the meds, off the meds and back on them.  This has been a good gage for us to determine what  truly is side effects and what is Sadie's behavior.  I think that has been one of the biggest challenges with Sadie's journey.  The seizures obviously are the big issue and for so long you search for that right medical cocktail to stop the seizures.  Once you get that you celebrate no seizures, however then you have to live with that cocktail.   Sadie is 8, but developmentally is a bit behind in some areas, and sometimes that behavior with her meds can be a challenge to deal with.  The reasoning with her is different, and we work through this every day.  It still doesn't stop the frustration I feel when I am out and about and she gets upset, and people don't understand.  Honestly it is what it is and we know how far she has come these last few years.  We have spent a lot of time better understanding the medications she is on.  You know they are helping with her seizure control, but what else is it doing, how else is it impacting her day to day.

One thing that has been a huge win is Sadie's new found freedom, her bike! We worked with the Occupational team at the IWK and a few short months ago Sadie was fitted for a 3 wheel trike.  She did so amazing on it! For all this time Sadie has never had the joy of a bike ride, or going with her friends around the block for  a ride.  This became something else as a family we could do and enjoy with both girls.  I am proud to say Sadie is now on a two wheel bike with training wheels!

As this journey continues, it really becomes about how we can open up more of these experiences to Sadie so she can continue to grow and learn.  Every day I see her moving forward and progressing, and it is so motivating as a parent.  We continue to move forward through this journey as a family and a team.