Updates on Evan

Sigh.

Posted by: Myra
Date: May 25th, 2010

Evan asked me today whether I had posted an update lately. I said I hadn’t and he told me I needed to. He said, “You need to tell them how sick I am and don’t sugarcoat it.” So, here it goes.

We are just now coming up for air and able to breath a little easier today. Last week was an extremely intense time for all of us as Evan was suffering from multiple symptoms and just not getting any relief from anything tried. He was literally up every two hours for about six days in a row. One of the biggest culprits is the Decadron (steroid) he takes to reduce inflammation in his head. He’s on a pretty large dose and his body is now starting to retain fluids. His feet and ankles are swollen and his stomach is distended. This drug also causes him to be extremely thirsty which doesn’t help with the fluid retention. It also causes muscle weakening in the legs. He just finished the last of two different antibiotics for the staph infection he contracted in Cincinnati -- one of them made him vomit and gave him diarrhea the other seemed to spike a low grade fever. And last, but not least, he’s on morphine 24-hours a day for pain which can cause constipation. Evan finally hit a wall on Sunday and ended up sleeping for 19 hours straight. Of course, then we’re worried when he’s sleeps that long.

We are so grateful to the many people have joined together to try to make our lives just a little bit easier. Special thanks to Robert, Debbie, Billie, Sheryl and Lisa for the delicious food deliveries. Thanks to Wendy, her mom and their church group for the beautiful prayer shawl, and to Michelle and her church for the prayer cloth. Thank you to Sheryl and Denise for sending Pleasant Nursery out to plant our window boxes (great job, Mark) -- it really brightened our day. And thank you for the cards, emails, and touching postings -- we read them to Evan nearly every day. So many have done so much for us, I apologize if you haven't been thanked personally. We do appreciate every single gesture, prayer, and positive thought being sent our way.

 

A truly big heart.

Posted by: Myra
Date: May 20th, 2010

This past Tuesday night, Sister Joan and Father Bob made a trip out to our house to surprise Evan with a truly remarkable gesture from his school family. Click on the “Home” link of this site to view the photos and see what the school has been up to.

Janet Zeigler (mom to one of Evan’s classmates) organized and photographed this ‘heartfelt’ greeting to Evan. The photo features all 444 students plus staff! As we understand it a bucket truck was arranged through Mr. Zock (another classmate’s father) to pull off this amazing feat! We can only guess at the amount of time and effort that went into this project. We are so humbled by your love and support. We will treasure these photos always.

Thank you from the bottom of our hearts.

 

Day by day.

Posted by: Myra
Date: May 16th, 2010

We’ve spent the last few days getting ourselves re-acclimated to home health care. Re-learning to work the pumps that dispense the various medicines, re-sharpening our nursing skills and developing a schedule for the IV and oral meds.

Evan had a rough few days, but yesterday and today were better. As bad as he feels at times he never misses a chance to say ‘please’ or ‘thank you’ when you do something for him. In fact, one of the doctors in Cincinnati told us, “I don’t think I ever had a kid his age tell me thank you after I examined them. He’s really something.”

We’re just now getting through 10 days worth of mail and opening the rest of Evan’s birthday cards and gifts. Thanks again to the gang at AT&T for all special gifts -- very creative with all the “13” items.

Thanks also for the Mother’s Day greetings sent to me. Please know that I don’t deserve or expect any special recognition for doing what any mother would do in this situation. It’s always been a gift and privilege to be Evan’s mother -- the greatest joy of my life. I must not mention Jeff’s name enough in my postings, but he’s the most hands-on dad I’ve ever seen. He’s an equal partner in Evan’s caregiving. In fact, we nearly trip over each other trying to help our boy.

Evan is aware of the all the love and support that is flowing his way. He’s very grateful, and so are we. Still praying for God’s miracle.

 

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