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Showing posts from May, 2013

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.

2014 Pound the Pavement for PBD-ZSD -- Central Illinois

Jeff and I are hoping to raise money for PBD-ZSD research by hosting a 5K Fun Run/Walk hopefully in September 2014 at Fletcher Park in Mt. Zion. We had hoped that we could have our first Pound the Pavement for PBD-ZSD – Central Illinois event this year, but we will need to wait until 2014.

If we do this it will be a fun run/walk type event but I figured it out and we will need at least $2500 in sponsorships just to break even. First there is liability insurance which is around $500. If we preorder 100 t-shirts at $10 each that is around $1000 and there are guaranteed to be additional costs of running the event such as security/safety provided by the police dept., advertising/publicity, creation of a website which allows for online registration, etc that will add up fast. Lots of details that must be worked out and expenses that must be underwritten by sponsors if we are going to make the run/walk profitable and an annual event.

I believe it can be done but I am very nervous and kno…

Playing in the Park - May 1, 2013

Ethan and I took advantage of the beautiful weather today and spent some time "playing" at our neighborhood park. I hope you enjoy the pictures. Ethan seemed to have a great time, at least for a while. He HATED the grass!