Skip to main content

Monday 1/24/2011

Ethan's been on antibiotics since Thursday, and he seems to be feeling a tad bit better. He's still really congested and has tons of snot, but he has had a better appetite today, so that is really good.

We had our monthly visit with Ethan's speech language pathologist, Betsy, today. She was excited about Ethan's ability to make and maintain eye contact. She was hoping to hear more constant sounds (right now all he has is the "m") but she was thrilled to see him rolling and trying to sit.

The big news of course is that yesterday Ethan was 6 months old. With his disorder that is a big date to get too, and 1 year will be even bigger. I've already told my father-in-law that we'll be having a huge first birthday at the church for this little dude!

I continue to pray for a miracle each day, and recognize that God's already been answering our prayers - overall, Ethan is doing so well. My grandma reminded me of something that is important to remember - prayers are always answered, the answer may be, yes, no, or not now/not the way you think. I know and have faith that if Ethan is not healed here on earth that he will be healed forever in heaven at the throne of Jesus.

Prayer Requests
-Pray for a family in MO whose baby went to be with Jesus last week.
-Pray for baby Ellie in England.
-Pray for all of the kids and families impacted by PBDs - please pray that our kids will be able to stay healthy throughout the winter, and if they do get sick that they will be able to bounce back easily.
-Pray for wisdom as Jeff and I decide about a new eye doctor for Ethan - we may go to Children's Hospital at St. Louis or the University of Iowa (Iowa City) to see specialists.
-Pray for the families who have recently lost their little ones.


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.