D-Junior

[FiD]

Yeah it's tough no matter what situation with children. I mean I know what issues my daughter has and there are still days of frustration where I just want to be like "why can't you be normal" I then feel deeply disturbed but this shit gets tough. You will break down(and have), you will wish it was someone else, you will have selfish thoughts, you'll find ways to blame yourself or others. However, I'm sure you as I have, will overcome these. Because over everything else, we love our kids and our family and will do whatever we can for them. Which includes your wife. How is she doing with all of this? It's extra hard on them but it's also extra hard on us. After all we have the be the rock right? Man that makes things even tougher.

[D-Railer]

Originally Posted by FiD

Yeah it's tough no matter what situation with children. I mean I know what issues my daughter has and there are still days of frustration where I just want to be like "why can't you be normal" I then feel deeply disturbed but this shit gets tough. You will break down(and have), you will wish it was someone else, you will have selfish thoughts, you'll find ways to blame yourself or others. However, I'm sure you as I have, will overcome these. Because over everything else, we love our kids and our family and will do whatever we can for them. Which includes your wife. How is she doing with all of this? It's extra hard on them but it's also extra hard on us. After all we have the be the rock right? Man that makes things even tougher.

My wife had precisely one breakdown early on, and since then has actually been the rock. She's definitely been better out of the two of us. As a couple we've always worked very well like that, one of always on solid footing.

[D-Railer]

More Nina issues. Her actual nasal passage is semi-sealed on one side. She can't blow out of it, she can't breathe through it, but she can drain from it. This will require surgery.

She may or may not have reflux. When that is determined further action may be involved.

Her ears are flooded with the usual childhood issues. We'll see how serious that is. She may or may not get tubes when the above nasal passage surgery is taking place.

And the big one -- she's shown a (yes, one) symptom of cystic fibrosis, and we need to do a test to rule that out. For those of you who can't speak doctor, this roughly translates as EITHER "I don't actually think that this is an issue, but not testing at this juncture would border on malpractice," OR "I really think this is an issue, but you already look like you're on the verge of a nervous breakdown, so I'm going to soften the blow by making it sound like she's got a chance." Definitely one of those two. The good news about CF is that the test is relatively easy, it has to do with mopping up a little sweat, and is a black and white yes or no answer kind of test. The bad news about CF is that if she has it, she'll live for about 20 years, and have difficulty breathing that entire time.

[Ollie Cromwell]

Hey, D, I realize this is completely unsolicited advice...

...but speaking as someone who has lived with a family member and a debilitating disease for all of my life, please, please, please seek a support group. You already know this, but that shit can make you very bitter from the inside out before you realize it happened. Knowing that others are out there rooting for you helps...a lot.

<3

[D-Railer]

I appreciate the sentiment.

I'd consider it... if I had any idea wtf was wrong. So far all we have are a million possibilities.

I have had bitter moments and I hate myself for them. If I don't toughen up, she doesn't stand a chance. For now I'm focusing on work and our move to the new house, and hoping that things just somehow work out alright.

[D-Railer]

Nina does NOT have cystic fibrosis, she's been given the all clear on that one.

I think I've aged 1 year for every week she's been alive. *shew.*

[kevstev]

That's great news. For what its worth, some of my cousins had lots of what seemed to be serious issues at birth- one of them had a cast on his lower body for 6 months, and they grew up to be perfectly healthy normal kids. The cousin that was in a body cast actually went on to be a construction worker (and is now a construction manager).

So keep your head up.

[Clonefan94]

Good news D. At least you got that brick of the full load off of your chest. Hang in there man.

[D-Railer]

Nina will go under the knife in the middle-end of september because she only has one nostril currently. The CT scan showed what appeared to be a hole of some kind in the upper portion of her skull, but because it was a "scout" 2-D scan they can't tell yet where that lighter density area is. Skull? Brain? Time to get a re-scan.

Radiologist report used the term "non aggressive lytic lesion." My wife looked that up on the web, turned white as a ghost and told me not to look it up. Sounds like it could be something that's nothing. Or it could be cancer.

[D-Railer]

Nina had her MRI on Friday of last week, today we got the results: No anomaly. (me - What?!?) No anomaly. (me - Wait, what?!?) No anomaly. (me - But the CT sca-- what?!?)

I refuse to dance a jig until I find out more, but this is impossibly (maybe even miraculous?) good news.