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Showing posts from April, 2013

April 2013 has been a busy month.

The last three weeks have sort of been a haze of therapy and doctor appointments. Having a full calendar along with all the dreary weather hasn't made April feel very "springy." I am looking forward to nice sunny warm weather so Ethan and I can get back outside everyday even if it is just for a 30 minute walk/stroller ride.

We are also continuing to wait to find out what is going to happen with our insurance coverage of the formula. We are hoping to have more answer within the next 60 days. The supplier has up to 30 days to bill the insurance and then insurance has up to 60 days to reimburse them, so we won't know until that happens if the insurance is actually covering the formula and if so, at what rate. Let's just say it is a BIG headache!

Monday, April 8th

Ethan's vision therapist came to our house.
Tuesday, April 9th

Ethan's hearing therapist came to our house.
Wednesday, April 10th

Ethan saw the pediatric surgeon at Carle. We were concerned about his f…

5K Run/Walk Events this Weekend in Atlanta, GA & Baltimore, MD benefiting the GFPD

If you live in the Atlanta, GA or Baltimore, MD areas and/or have friends and families in those areas who enjoy participating in 5K Walk/Run events for a charity there are events raising money for the Global Foundation for Peroxisomal Disorders this weekend (Atlanta’s event is Saturday, Baltimore’s is on Sunday). You can still register the morning of the race! For more information please visit:!/GlobalFoundPD or the specific event pages --- Pound the Pavement for Peter in Atlanta, GA on Saturday and Ilan-a-thon in Baltimore, MD on Sunday.

2nd Annual Pancakes for PBD-ZSD - Saturday, May 18th

The 2nd Annual Pancakes for PBD-ZSD event is an all you can eat pancake and sausage breakfast benifit to raise funds to offset the cost for our family to attend the 2013 Global Foundation for Peroxisomal Disorders (GFPD) Conference in Lincoln, Nebraska this summer. Any money raised above what we will go to help other families impacted by PBD-ZSD attend the 2013 GFPD Conference.
Saturday, May 18th 7:00-11:00am First Baptist Church (Mt. Zion, IL)
$5 per person / $20 max per family (Children 5 and under eat FREE)

Families like ours, who are impacted by PBD-ZSD, look forward to the GFPD Conference each year. This is the one place where we can be with other families that understand this diagnosis, learn about the latest research, and have our children seen by the top PBD-ZSD specialists in North America.

For more information about the Global Foundation for Peroxisomal Disorders (GFPD) and PBD-ZSD (Peroxisomal Biogenesis Disorder-Zellweger Spectrum Disorder) please visit


Ethan's not so "tubular" adventure

I've not had the emotional energy to write much the last few weeks. I've been feeling pretty overwhelmed by the reality of the PBD-ZSD diagnosis on both our family personally and on my GFPD family at large.

Wednesday, March 20th
We took Ethan to our primary doctor's office because of his decreased intake and assumed that we would be heading to our local hospital for IV fluids. Our doctor thought that instead of staying locally we needed to head to the larger hospital about an hour away which has several of our specialists, including our GI. While we were actually waiting to see our doctor I got the call from the nurse at the GI's office with the date for Ethan's feeding tube surgery - May 8th. While the doctor was examining Ethan he said that he didn't think Ethan could wait that long, and that he was going to call the pediatrician/hospitalist at the larger hospital and see about getting us admitted for IV fluids that afternoon. So, we came home and packed our b…