Skip to main content

Ethan's first haircut - November 7, 2012

Ethan's beautiful curls. I'm pretty sure he won't grow anymore back.

After the cut. I've got a few places I need to try to fix tomorrow, but hopefully I didn't mess it up too much.

Comments

  1. I had to save Landen's first curls too! I cried for two days after cutting them off they were just so precious to me.

    ReplyDelete

Post a Comment

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…

A Family of 3 Once Again....

Jason Johnson is a writer of a blog and several books about fostering and adoption. One of his recent posts "Foster Care, Adoption, and Saying Yes to the Unknown" is a powerful and insightful look into the life of a foster parent. I'll be the first one to admit that when we said "YES" to two little girls who needed a family that we never thought that I'd be writing about the girls return to their biological parents. However, a little over a week ago our two foster daughters moved back in with their mom and dad.



"Saying Goodbye To The Foster Care Child I Fell In Love With," isn't exactly like our story, but there are a lot of similarities, and gives you a bit of a look into what we have experienced and are now experiencing. We are heartbroken and grieving. We miss them so very much, be we also know that they are loved and that they are happy. This summer as we prepared for this we spoke openly and often about the fact that you can be both happy…

#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…