Hi Everyone, Im sure that most of you have been dying for more news on our precious Arden. Here the one year mark update: One year ago, Arden came home with the flu, over the next few days, we watch her progress and dreading that she would have another episode/attacked of her conditions ANE ( heres a site with more information on her condition; ajnr.org/content/27/9/1919.full ) and in the early morning of Feb 18th (Family Day), we were calling 911 as the first sign of her neurological dysfunctions started happening.. Such as March 10th, 2009, this day will forever stay with us. Our neurologist is also currently working getting us genetically tested to find out if Xavier also has the genetic markers and to know if Glenn or I have the genetic marker. This will help us be prepare and warn family should it be in our genetic coding although they seem to thing that this is a new mutation. However, as the true character of human nature to thrive and want to survive and God willingness. Arden has pull through and is making some progress. The first few months, we saw major changes/progress as she relearned basic skills such as sitting, rolling, toileting, eating, drinking, and feeding herself. Currently, she is receiving physiotherapy on weekly basis, she is relearning to walk independently and she can achieve quite a few steps on her own with very close supervision. This winter has been hard for us, since all this snow makes it very hard for Arden to walk around even her walker gets stuck in that snow. She is also taking swimming lessons with hopes that we can create a passion and an independence with a physical activities.. We have tried Baclophen ( a common muscle relaxant drug) to assist Arden with the spasticity in her legs but it had more negative effect than good one so we have decided to maybe try it again when shes had more time to recover. In the spring, we will be undergoing botox once more with serial casting for 6 weeks in hopes to give her more range of motion in her feet. This has worked once in the past, so we are hoping that history will repeat itself. She is currently having blocks of speech therapy as her speech is very slowed and she doesnt not always have control of volume. She still is following her music lessons with the lovely Melanie and Arden loves to serenade us with songs all day long.. Right now, her favorite is A dream is a wish and Part of that world of course it would be princess themed :).. Her left eye, still seems to twitch sometimes, but it has not affected her vision, we spent most of the day at Mac yesterday and her prescription has been lowered however we will be patching her left eye has it is more dominant than her right and we are hoping to make them equally as strong. She is doing well in school with the adaptations that she has in place and I have to say that the school works very hard and well with her. Theres no description how thankful I am to the staff, kids and volunteers at that school. Arden is never excluded from any activities. We are currently trying to figure out a way to make up for the months of school that she has missed last year..As Arden tires out quickly and comes home from school exhausted, its not something that we can manage right now in the school year but maybe something that we need to look at for the summer. As parting note, Arden has been granted by The Guelph Wish Fund ( (guelphwishfund/wish-stories) a trip to DisneyWorld, that we will be enjoying later on in the year has a family. We are very grateful to this organization and to the friend that made it all possible. We also want to take this opportunity to thank everyone that has been there to support us in the last year some more at the beginning and other through out. We are very blessed to have so many good friends and family in our lives to help along this journey. PS. Through all this Xavier has remained the same loving, rambunctious little boy that he has always been. Have a good day, Rachel, Glenn, Arden and Xavier.
Posted on: Fri, 14 Feb 2014 13:38:28 +0000
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