Saturday, April 22, 2017

Marion is going on a Make A Wish


Some of you may know our Marion is living with Rett syndrome and epilepsy. Our family has watched as Marion's Seizures have become more and more frequent. We have tried everything the doctors could think of, from medication to diet, to the VNS implant. now Marion seizure has become a daily occurrence but never any easier for us to deal with. Marion seizure is considered uncontrolled: “intractable,” “refractory,” or “drug resistant.” She is also at a high risk for Sudden Unexpected Death in Epilepsy (SUDEP) which we live with the knowledge of this ever day.

I am so thankful for her Neurologist that nominates her for Make A Wish.

My hope is that Marion's wish will be a time for our family to make long lasting memories that we can always carry with us! Marion is the bravest little girl I know and I am so proud to be her mother!

These are the shirts I made for Marion's Make a Wish. Ours says "Marion's Make A Wish but my real wish is to cure Rett Syndrome." Her shirt says the same but instead of her name, it says "My" Make A Wish...

It was a lot of hard work on my new circuit but totally worth it!

Sunday, February 19, 2017

AJ unboxing toy, Grossery Gang, Rotten Cola, special needs acceptance, R...

This is another one of AJ's unboxing video. Marion really enjoyed this one.  She started with a serious face but by the end,  she was grabbing the packaging, smiling and laughing.  They are so cute together.  I love that they have this to do together!

AJ unboxing the fun, Grossery Gang, Horrid Hotdog Machine,

Tuesday, February 14, 2017