Simon Avey


Simon Avey spent almost 4 weeks in the hospital. Click HERE for a recap of the beginning of this journey. Then skim over the rest of the posts and see how God has blessed Simon. This blog is for family and friends who have been praying faithfully for Simon.

Friday, January 12, 2007

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.

6 Comments:

Anonymous Anonymous said...

That is great News! Simon and your family continue to be in our thougts and prayers.

10:37 PM  
Anonymous Anonymous said...

Wow, what a God we serve!
Thanks for the update! It was worth the wait!
We at The Tison house are still praying.
The Avey family faith is such a great example to all of us! Thanks!

8:22 AM  
Anonymous Anonymous said...

How amazing and wonderful! We are excited and will continue to pray.
Thanks for the update.
The Wike's

2:42 PM  
Anonymous Anonymous said...

How awesome is this!! We're rejoicing with you, and thank God!

8:12 AM  
Blogger being Kandice... said...

Praise God! He is Good! I thank Him that he has shown his goodness to you throughout this process and that now you have good news too!

12:16 PM  
Anonymous Anonymous said...

So wonderful to hear! Oh, what a journey you all have been on over these last months. You have met each challenge with grace and with an amazing faith and have come through it all the stronger. Thank you.

~A Young Nurse

1:04 AM  

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