Monday, August 02, 2010

Jett has Down Syndrome.

It's true! Our sweet baby boy has an extra chromosome wreaking havoc throughout his body. From slanted eyes to hypothyroidism, DS symptoms run the gamut. But, thanks to the human genome project, which mapped out all the DS chromosome variations and through lots of research and parental trial and error, it turns out that DS is a treatable condition. Yes, I said treatable. Jett doesn't have to suffer the same physical and mental setbacks as his predecessors. We can and have done much to shape his mind, body and future.There is no way to prevent DS since it randomly occurs upon conception, but there's plenty that can be done when pregnant. According to Dr. Oz's You During Pregnancy, proper nutrition, a nontoxic surrounding and a low stress environment is key during pregnancy to help "switch off" unwanted chromosomes.
So far, we limit the amount of toxicity he's exposed to through the food and air, practice attachment parenting, keep his milk-source (Mommy) on an all-organic, non-goiterious diet (to support his thyroid), give Jett a myriad of supplements as per the Changing Minds Foundation protocol, involve Jett in music therapy groups with other DS children, give Jett daily massages with various health-benefiting oils, and perform daily physical therapy. We will be adding cranial sacral work and Chinese medicine this week.
With the proper execution of early intervention, screening for common problems, medical treatment where indicated, conducive family environment, daily physical therapy and exercise, natural supplements, a dietary plan and other methods, we could actually stop and even reverse many effects of DS. (Check out Kristen's book, Naturally Better Kids and Down Syndrome What You CAN Do by Kim & Qadoshyah Fish.) At 5 months old, Jett is happy, healthy, strong and alert. He is gaining about a pound every two weeks (just like daddy) and is meeting all of his milestones. Every new doctor who meets him questions the fact that he has Down Syndrome. In fact, our newest pediatrician said that the "paper baby" in the file in front of her didn't match the healthy baby smiling at her. But the shadow of Down Syndrome still hangs over him, and we are now faced with a new challenge.
Just a few days ago, we took Jett to a cardiologist. An ultrasound on his heart revealed that he had an atrioventricular canal defect, and would require open-heart surgery. An atrioventricular (AV) canal defect is a large hole in the center of the heart. It occurs in about 25% of infants with DS. During the operation, the surgeon closes the large hole with one or two patches. Later the patch will become a permanent part of the heart as the heart’s lining grows over it. The surgeon also divides the single valve between the heart’s upper and lower chambers and makes two separate valves. These will be made as close to normal valves as possible. After the surgery, it is likely Jett will not require any further procedures on his heart, and it will function normally. We therefore have scheduled Jett to have the surgery within the next few weeks in Tampa.
The cardiologist was amazed that Jett looked so great. She kept saying, "I've never seen this." She said that there is no reason why he shouldn't have gone into heart failure already.
 Your prayers-meditations-positive thoughts are greatly appreciated.

8 comments:

Michael "Locoduck" Duron said...

From someone who has held this amazing little life in his arms, I concur that there seems to be nothing indicating poor health. He's amazing and blessed with two AMAZING parents. Love you all, my prayers and thoughts are with you guys. If you need anything holler.

Tim Mike said...

Im praying for you guys.

Oran E. Parker said...

I will keep you, Jett and the rest of your family in my thoughts. -Oran

ds.mama said...

What gorgeous eyes! We had the same defect and got a great fix in Sept. '08. We're hoping Jett's surgery is smooth and perfect!

Esly Carrero said...

Praying over here for Jett to make it through all of this safe & sound. Also that all of your family will stay encouraged & positive as you face all these new challenges. Jett is such a lovely little boy! May the Lord keep shining brightly through his sweet innocent smile! <3 Esly & David.

Keelan Parham said...

Wow. I am blown away. Even in person, he doesn't seem like he has DS. Either I don't know much about DS babies, or he is really mildly affected. And he is such a beautiful, pleasant baby!

When our first child was born with her own set of devastating, unique "challenges", we felt so alone, and the situation seemed so hopeless. With several surgeries ( the newest one in a few weeks ), tons of therapies and Dr.s' visits, and CONSTANT prayer, she is doing amazing.

Jett has two loving, completely devoted parents who are going to be powerful advocates for him his entire life. He is very blessed, and I know he is going to do miraculously well.

The two of you are blessed to have him as well. That's something my wife and I have learned over the years. This may not be the journey you would've chosen, but you will find it holds some joys that a more "typical" journey wouldn't have given you. Just wait, and you'll see.
God doesn't cause a heartache, but He doesn't waste one, either. In other words, good WILL come out of this. He will make sure of it.

I will be praying. For all of you. We love you, Durkins!

Anonymous said...

Hi Kenny,

I have a child with DS. He'll be 5 soon and he is an uncommon joy. To be sure, some challenges are extra-ordinary, but so are the rewards.

Do you know of someone named Richard Durkin? I am scouring the internet looking for information regarding Richard (Dick) Durkin. I believe he died inthe 70's and worked for IBM for a number of years. He may have had realtives in the Montana area. Do you anythng about him or his remaining family?

Any help you can provide would be much appreciated. You can reach me directly at cvvieceli@hotmail.com.

Thanks, and all the best to your son.

Kristen said...

Kenny, your little boy is gorgeous. really beautiful. Well done on the work you guys are all doing. It's a great ride! Oh, and thanks for the plug!! It came up on my google alerts!
cheers, Kristen (Naturally Better)