Three Years Later

This blog is over three -years old now. Perhaps someone will find it and wonder what has happened since the last post. Simon is now three years old and is a great blessing to our family. As far as we can tell, he is totally healthy. We still don't know what caused his illness. We can only thank God and continue our mini-worship services each time we hold Him.

Grandpa

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

Finally Some Answers!!

Finally Some Answers!!

For those of you who faithfully check Simon's blog for updates, we apologize for not keeping up very well over the holidays. There wasn't much to report, which is a blessing, but we don't want to leave you in the dark either. We are so thankful for your support and prayers, and we are confident that Simon's incredible improvement is the result of many prayers and God's great healing.

Simon continues to grow and learn new things every day. Simon had a check-up at Riley with the metabolic doctor, Dr. Hainline, on Wednesday Jan 10th. He's a whopping 14 lbs 2 oz., our chunkiest baby yet, and 24.5 inches long, which puts him at the 50th percentile for length and just under the 50th percentile for weight. He's learning to roll over and play with toys, and he's developing quite a laugh. Simon is becoming known as Smiley around the house because he's such a happy baby and smiles all the time. He is becoming very social and would rather play than eat or sleep, which reminds me of two other little monkeys in our family.

OK, now for the good news. At his appointment on Wednesday, Dr. Hainline was very pleased with Simon's growth and development. He had some test results to share with us that came back recently from a lab in Philadelphia. It showed that Simon was slightly deficient in an enzyme called CPT1 (Carnitine palmitoyltransferase (CPT) deficiency), which is one of many enzymes that break down fatty acids to produce energy. He is just below the normal range for this enzyme, but not completely deficient. It means that Simon will continue to be treated as he has been, with special formula that has the fat partially broken down, as well as a few supplements called Levocarnitine and liquid Coenzyme Q10. He will have to be on a low-fat diet as he grows older, like skim milk, lean meat and low-fat cheese. He can start baby cereal and fruit in about a month. He also can't go more than 6 hours without eating. As far as future development is concerned, he could potentially have weaker muscles and some muscle soreness, but time will tell. He doesn't appear to be limited in any of his abilities right now, and actually prefers to kick and stand and bounce. He has good muscle coordination and is doing exactly what a 4 month old should be doing. For more detailed info on CPT1, you can visit this link: http://www.idph.state.ia.us/genetics/common/pdf/cpt1.pdf

Now for the great news!! Just this morning we received a call from Dr. Hainline's office with more test results. Two of the tests we've been waiting for, the Pyruvate Carboxlyase Deficiency and Pyruvate Dehydrogenase Deficiency, both came back NORMAL!! Praise the Lord that Simon does not have either of these two bad prognoses. He also had some blood-work done on Wednesday and all of those levels are healthy and normal. We had a special time of prayer this afternoon, thanking God for his answers to prayer and healing for Simon. We are so grateful for His goodness, protection and provision for our family this year. 2006 was a rough year, but if there's one thing we've learned through it all, it's that GOD IS GOOD, ALL THE TIME!!!

There are still several tests out that we're waiting to hear back from in the future, but this news is good and reassuring that Simon's future health will not be as grim as we once thought it might be. Thank you all so much for your faithful prayers for Simon. We are rejoicing over this good news. Please continue to pray for his health and protection from illness. It may be rainy out today, but all we feel is the warmth of God's goodness.

Simon's First Christmas

We are very grateful for Simon's first Christmas! His brother and sister have had a few normal kid sicknesses in the past few weeks and Simon has not come down with any sniffles or coughs. We still have not heard from the metabologist but we continue to pray that the test for PCD is negative. That would be a great gift!

There have been almost 8,000 hits on this blog. We assume that this means hundreds of people have been praying for Simon. We thank you for praying. Please continue to pray for Simon once in a while.

Tom

Surprise visitor at church

We had a surprise visitor at church this morning. If you have been following this blog you may remember Madison. She is a baby who is the niece of a man in our church. She was also in Riley's hospital and was in serious trouble.

Madison was in church this morning! Praise God.

Simon is doing incredibly well but we still have not heard results from all the tests and have to protect him from sickness. Simon stayed at home this morning. He is really doing well and has avoided all the sniffles and normal kid sicknesses that have affected his brother and sister.

Please continue to pray for Simon and join us as we praise God for Madison.

[Posted from my cell phone]

Pulmonary Report

We are still waiting on the metabolic tests. They told us it would take a while.

Simon was at Riley's last week for a Pulmonary Doc and he did well. They talked about a couple of times when his O2 level dropped but and he might have some re-flux but he is doing extremely well.

He put on 1 lb 1 oz in a 10 days! He's around 75% for height and 50% for weight. He really appears to be doing very well.

As always we thank you for praying. Things are going so well we forget to update. However we still keep Simon at home and keep him on a monitor at night until we hear more from the reports. A good report would be a great Christmas present.

However, God has already been so good to us. It's incredible!