Our son, Ethan, was diagnosed with peroxisomal biogenesis disorder - zellweger spectrum disorder (PBD-ZSD), a very rare genetic disease, when he was just four weeks old. There is no cure for PBD-ZSD and treatment is symptomatic. This is our PBD-ZSD journey.
1) Ethan can now roll from belly to back as well as back to belly! He has done this several times today and both Jeff and I got to witness it! YEAH!
2) Scheduled his evaluation with the developmental vision therapist.
3) Scheduled his evaluation with the occupational therapist.
4) Scheduled appointments with eye specialists at the University of Iowa.
And most importantly.....
5) Ethan finally pooped! It had been since Sunday morning. I called the doctor's office around 2pm and before they called back, he finally went... of course, he must have known that I had called. I'm not sure why, but it seems like several of the other kids with Ethan's diagnosis also have digestive system issues.... For now, our doctor has suggested daily prune or pear juice. Hopefully, this will help him become more regular.
-Please pray for all the children and families impacted by PBDs.
-Please pray for the success of our new non-profit organization, The Global Foundation for Peroxisomal Disorders.
-Please pray for baby Ellie in England and her parent's fundraising efforts to help future families who will utilize the hospital in which she is receiving care.
Yesterday I was extremely blessed. A teacher friend that I worked with presented me with a belated Christmas present from many of the members of the EHS staff. It was a very generous gift, thank you so much! I am overwhelmed by the generosity. I miss my friends at school, but I know that I am where I am supposed to be. If you were a part of this, THANK YOU!