Skip to main content

My Strong-Willed Little Boy

Ethan is 22 months old and it is showing! All of our therapists laugh because it seems like most of the kids they see, despite the challenges that they have, still experience the "terrible twos." 

Ethan wore his glasses so well on the first day but we haven't been able to keep them on for longer than a few seconds since then. Even if we hold his hands he will wave his head back and forth or try to rub his face with his shoulder to get them off, all while screaming of course because we are holding his hands. If we don't hold his hands the glasses are off before they can get on and adjusted.

Ethan has also decided that he shouldn't have to wear the one hearing aid that is working. He yanks it out almost immediately every time I put it in he pulls it out.

Bedtime has been going a bit better. Ethan is so mobile - combat crawling all day long - that he seems to be wearing himself out a little more. Last night he was asleep by 10pm and tonight by 9pm. He still needs medication to help, but that is success in our book.

Ethan sure has a mind of his own and a personality to match. We would appreciate lots of prayer for Ethan to accept and enjoy his hearing aids and glasses. We pray that he will understand that they are designed to help him and that he will learn to tolerate them and eventually even want them on because he realizes that he can hear and see better with them on.


Comments

Popular posts from this blog

So much and so little to write about...

When I started this blog I don't think that I could have imagined a time would come in which months would go by without me writing. However, that is what has happened.

So much has changed over the last almost eight years since Ethan's birth and subsequent diagnosis with PBD-ZSD, yet at the same time so much hasn't. Unlike parents of typically developing children we find ourselves still parenting a child with complex medical needs who's developmental skills range anywhere from 9 to 18 months. Ethan still has PBD-ZSD, and right now his uncontrollable seizures are a major issue. We still fight PBD-ZSD the best we can each day with a basket full of medications and supplements and other medical interventions (feeding tube, cochlear implant, AFOs, etc), numerous therapies, school (which Ethan loves), and prayer. We advocate for him and all children and families impacted by PBD-ZSD and related peroxisomal disorders through our involvement in the Global Foundation for Peroxiso…

#PauseForPBD -- October 5, 2017

October 5th is a special day for our family as we celebrate #PauseForPBD, the annual awareness day for The Global Foundation for Peroxisomal Disorders (GFPD). [Jeff's birthday also happens to be October 5th but he doesn't seem to mind sharing it with #PauseForPBD day.] Our son, Ethan, is 7 years old and is one of less than 200 children, known to the GFPD, living worldwide with Peroxisome Biogenesis Disorder (PBD).  Ethan has a contagious smile and laugh, despite the fact that PBD has caused him to have severe cognitive and physical delays. Peroxisome Biogenesis Disorder (also known as Zellweger Spectrum Disorder), is a rare, genetic condition affecting multiple organ systems in the the body. PBD is generally fatal in childhood. As a parent, it is difficult to express the sense of loneliness and feelings of isolation that enter your life when your child has a rare genetic disease that most people have never heard or and has no cure.
However, #PauseForPBD, is a day that brings o…

Faces of Peroxisomal Biogenesis Disorders

This Saturday we are hosting the first annual Pancakes for PBD benefit.  All the proceeds will go to the Global Foundation for Peroxisomal Disorders to help offset the costs for our family and others like us to attend this summer's 2012 Family Support Conference in Orlando, FL.  We hope that this will become an annual tradition and allow us to help raise awareness and money for peroxisomal biogenesis disorders.

Here are just a few of the faces of PBD.