A month on the experimental meds....

Ethan has been on the experimental medicine for a month now.... so we started this morning of with a fasting blood draw at DMH. In addition to the liver panel test he also had his blood drawn to check his ACTH and Cortisol levels. The liver panel is to check to make sure that the medicine isn't causing any adverse affects on his liver. As long as his liver panel results have stayed the same (they have been elevated since birth due to PBD) and have not worsened then we will begin slowly increasing the dose of Cystadane (betaine). The ACTH and Cortisol tests are routine tests that Ethan gets every six months to monitor his adrenal function. For children with PBD the risk for them to have adrenal insufficiency is high, especially after the age of 1. So, to be proactive, Ethan has his measured every six months so that if he ever develops this problem we can hopefully catch it quickly and begin treating it with the proper medication.

Otherwise everything else has been pretty "normal" around here. We are continuing all of Ethan's therapies, doctor appointments, etc. We are getting the keys to our "new" Ethan friendly house this evening and are looking forward to getting it all fixed up and getting into our new house.

Please continue to pray for Ethan, our family, and all families affected by PBD.

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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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