Everytime we hold Simon we praise God!

Trey, Dean, Summer, Simon, Tobi	Trey and Simon

God continues to amaze us!

For those of you who faithfully checked Simon's blog daily during his worst days last fall, we thank you for your constant prayers and support. We apologize for not updating the blog over the past few months to keep you informed on Simon's condition. Since his checkup in January with the metabolic doctor and the news of his diagnosis, things have been relatively quiet and he continues to improve. Simon has grown by leaps and bounds and he amazes us each day with new "tricks" he is learning. He's rolling all over the floor and getting into all sorts of trouble. We have to keep a close watch on him since his favorite things are books, newspapers and anything electronic. Tobi and Trey are quite busy trying to keep their toys out of his reach. He likes to sit up now and watch all the action, and he loves the swing outside. Simon has been on baby cereal and baby food, mostly fruits and vegetables, for the last few months. He is enjoying the new tastes and textures, particularly the fruits. However, he's not too fond of his green veggies! Grandpa thinks it must be genetic!

Simon has had several follow-up appointments with his specialists in the last two months. He had a swallow study done on March 1st which revealed that he no longer need to have his formula thickened. We were very excited about this news, as it makes preparing his food much easier. On April 9th Simon had an appointment with his cardiologist and had an echo-cardiogram done. Everything looked normal, and the doctor took him off one of his heart medications. He will be able to go off his second heart medicine in about 3 months as long as everything remains status quo. Praise God for good reports! On April 26th we returned for an appointment with the neurologist. Simon had an EEG done to determine if there was still any risk for seizures. The doctor was pleased with the results and we've been weaning him off his seizure medicine over the last 3 weeks. We're so glad to be done with some of these medications.

He will return in August for an appointment with the developmental team and the metabolic doctor, and we will get more instruction then on his diet restrictions as he is getting more solid foods. We were told that due to his CPT-1 deficiency, he will be on a low-fat diet for the rest of his life, but we're not exactly sure what that will look like yet. He may end up being the healthiest of us all!

Some people have asked if Simon has completely recovered from his illness. Because the nature of his condition is genetic, and the error is at the gene level, there is no "cure" for his metabolic disorder. He is being treated for it with diet and medicines, as well as recovering from the initial "insult" to his organs when he had the metabolic crisis back in September. As long as he eats regularly and doesn't catch a virus that makes him not want to eat, Simon will be o.k. He has had a few colds this spring and seems to be weathering through them like a trooper. He doesn't have an immune system problem, we just have to be careful that he doesn't pick up any nasty stomach bugs.

The local Christian Bookstore, The Tree of Life (here in Winona Lake on Kings Highway) is doing a kick-off for the summer party this Saturday, May 26th, from 6:30-8:30. They are introducing a new drink machine and would like to donate the proceeds from the evening to our family to help with some of Simon's medical bills. Everyone is welcome, we hope to see you there!

Thank you all for your interest in Simon and our family. We are so encouraged by your prayers and support. We hope to be moving back into our home in about a month or so. We will be so glad to settle in again and enjoy the summer in our "new" home.

"May the grace of the Lord Jesus Christ, and the love of God, and the fellowship of the Holy Spirit be with you all." 2 Cor. 13:14