Ethan's button - May 22, 2013

Ethan underwent the second part of his feeding tube surgery today. The doctor replaced the long tube (called a PEG tube) with a button. While we are very sad that Ethan is now completely dependent on his feeding tube (sometimes he will take a few bites of purees, but not often) we are very thankful that we have a way to provide our little boy the fluids, nutrition, and medicines/supplements his body needs in order for him to stay healthy and continue to grow and develop in his own time and way. We are very glad to be rid of the long tube and to have the button.

As always we had wonderful care from all the doctors and nurses who took care of Ethan. We had great nurses and were excited to see some familar faces and that several people remembered us and our sweet boy. A big thanks to a very special nurse/friend/fellow believer, Anne. We feel blessed that God placed you in lives.

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"God Chooses Mom for Disabled Child" by Erma Bombeck

I don't think this is exactly how it works, but I had to share anyway. I believe with all my heart that God does not make mistakes, and although I will fully admit that it hurts my heart that any child is born (or develops) disabilities and/or life threatening illness, I know that God is sovereign and that He has a divine plan (even when we don't understand it!). I believe that God brought Jeff and I together and that He knew Ethan even as he was growing inside of me. While this is not the journey we would have dreamed of or chosen, and there are going to be times (and have been already) when we struggle, stumble and fall it is our hope that in the end that we will bring glory and honor to the Lord. God Chooses Mom for Disabled Child Written by Erma Bombeck Published in the Today Newspaper Sept. 4th, 1993 Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,000 women will become mother

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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 Perox

The Journey We Are On.....

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