I'm home for the first time since last Thursday night and Hubby is up at the hospital with Little Dude. I'm looking forward to getting a good night's sleep so I can be refreshed to go back to the hospital early tomorrow morning.
|Hanging out in the swing at the hospital|
Hubby's sister is a doctor and is home for her vacation this week. The timing could not have been better as she's been spending a lot of time at the hospital with me, helping me give the doctors the information they need and coming up with questions that I need to ask. Since I'm not a medical professional, it's extremely helpful to have someone around who know what to do in a situation like this.
Little Dude's GI study showed no abnormalities and the ENT consult didn't show anything wrong either. Two geneticists are consulting on his case now and will be doing tests to check for a genetic syndrome. Based on the list we've put together of Little Dude's unusual characteristics and personality, they're fairly certain that they will find something. They're doing blood tests, a urine test, and an ultrasound of his internal organs.
|Sleeping at last!|
Here's an overview of his symptoms and characteristics:
- Problems eating and a disinterest in food.
- Dry skin-this runs in our family, but we're still adding it to the list just in case since his is more severe and widespread over his body than the other kids' have ever been.
- Slightly inset wide-spread eyes that have an almond shape.
- Ears that are low-set, rotated slightly, and bigger than average.
- A high arch palate-basically the roof in his mouth is abnormally high.
- An improper suck while feeding.
- Hypersensitivity-the slightest touch or movement often sets off a massive crying fit.
- Arching of the back and neck-Little Dude usually has his back arched and his neck extended in what looks like a very uncomfortable position.
- A hoarse, often high-pitched cry.
- Being extremely hard to calm down and keep calmed down.
- Heart murmur.
- Not meeting developmental milestones-he doesn't smile, laugh, track things with his eyes, put his hands in his mouth, wave his arms and kick when awake (unless he's crying about something), or coo.