Saturday, February 7, 2009

The Doctor's were Wrong!!!!!!!!!!!!!!!!!


Okay, I'm not sure how to convey all of this. If I had to wrap it all up in one word it would be INSANE!

Evan was born on Thursday (1/22/09) at 9:52pm. We expected him to live about 15 minutes and suffocate in our arms. Yes, suffocate. Brutal. If I could do anything to take away other families from having to go through something like that I would. I can't imagine anything worse. It's evil and horrible and I wish I could do something. If anyone out there is going through, has gone through, or is going to go through that feel free to call me, anytime, on my cell phone (402-960-2554). Honestly, just call and scream at me if you need to. I understand and I did the same thing. Call me and just cry until you are so exhausted you need to go to sleep.'s normal and expected and I feel for you. I'm not sure if a male has ever cried as much as I have. I do not feel bad for it nor less manly. It's just being honest with yourself. It's healthy. Do it.

Evan looked much better than I had ever expected. In fact....he looked damn near normal! I did not dwell on it and kept bracing for the worst. He just kept plugging away and eventually we HAD to go to sleep out of sheer exhaustion. I fully expected to wake up at some point in the middle of the night and find him having passed. I was okay with it and was simply enjoying our extended visit with him. I told him (out loud) that if he needed to go I was okay with it and I loved him. I knew we would see him later on after he had passed. We'd just have to wait a little bit. That's fine. I'd wait for eternity.

Friday morning (okay, morning in the hospital and morning anywhere else is different.....the hospital is a time vacuum) rolled around and found Evan screaming for food! What?!?!?!?! He was supposed to be weak and dying. Obviously, something was off. I STILL thought the Doctors were correct and we were just VERY lucky. I mean, leading specialists know what they're talking about......right? ;-) (I had to get my jab in somewhere.) We headed off to get a bajillion.....yeah, a bajillion xrays taken. Childrens hospital is next door to our Hospital so we took a walkway over the street their. I carried Evan in my arms the entire time. We went to the xray room and they told me it could take a while and we can't go in. I told them that's not okay with me. Honestly, I'm not sure the entire military of the USA could have pulled him out of my arms at that point. We then spoke to the lady actually doing the xrays and she said it should take 10-15 minutes.....but we still could not go in. I'm not sure why they had a chair and see through shield in their then. When is a situation more time sensitive then this?!?!?!? I had no choice. I handed Evan over to her and completely lost it. Erin held strong but I couldn't. I just couldn't. I sat outside the room and cried. Just cried. They finished within 10 minutes! We rushed back in to clothe him and hold him. The crying stopped.

We went back to the room and at some point it started to hit us that maybe the Doctors were wrong. The biggest tip was that they started acting differently. The way you would act when you were expecting one thing and got something totally different and had no explanation. Yep, a true WTF from the Doctors. That night (Friday, about 24 hours after Evans birth) a geneticist came in and spent 3.5 hours with us. That ended up with him telling us that he thought Evan had achondroplasia (ie: typical dwarfism.......think "Little People, Big World"). Yep! Our little dude was going to live for a long time and just be little. Talk about cloud nine! Achondroplaisa has since been ruled out from a DNA test. However, he is still doing really well and we are continuing to hunt for a diagnosis. Our specialist in Los Angeles says that he most closely resembles Junes syndrome but it's not a perfect fit. Jeunes syndrome can vary drastically. He could be in for a lifetime of surgeries until he stops growing. They can surgically expand his rib cage but they have to go in every 6 months and adjust for growth. I spoke with a mother from Denver and her 8 year old son with Jeunes has been through 16 surgeries. He's very active and doing well. He carries oxygen with him but still manages to lead a normal life. We are still not sure if Evan's case will lead down this path. If it does, we will be right by his side fighting with him. Nothing will stop me from doing everything possible for him. At this point we are still without a diagnosis and I am actively reaching out to countless individuals in hopes of getting closer to an accurate diagnosis. The bottom line is that we just keep focusing on the next step. One step at a time. He is doing very well now and we'll do everything we can to keep it that way.

There is much more to tell. I will make posts more often now as it seems like the best way to keep numerous people up to date on our situation.

Thanks for checking in!



  1. Congratulations! What an awesome story! I'm from POLP group and looked at Evan's pics...he is a handsome little guy!! I can feel how proud you are of him just by your writings. If you don't care, I'd love to 'follow' your blog. I have one, too. Feel free to add mine as well. Is it ok if I put your link on my page?


  2. Hi Eric - ditto what Bobbi said! Great pics, and I'm very glad to see another dad getting so involved. I also have a blog, at, and I'd like to link to yours from mine if it's okay.

    Welcome to the community!

  3. What an amazing story. Evan is beautiful.

    We lost our son, Nathaniel, to skeletal dysplasia last July. At our 20 week ultrasound we learned that he had a lethal form, but the doctors were unsure of the specific dysplasia. We hoped and prayed the doctors were wrong. He only lived for 20 minutes. We later learned through genetic testing that he had Achondrogenesis type II which is a rare, random gene mutation.

    I wish you a many, many blessed years with your son.