OT: I can't sleep...I'm frightened

sportdan30 · Post by **sportdan30** » Sat Jan 29, 2005 2:15 am

Just from my experience, this place is as good as any to pour your emotions and hope someone is reading this and saying a prayer for you.

Why didn't anyone tell us Dads that caring and loving for a child can be so gut wrenchingly hard at times? Not that I would have ever considered not having children, but it's not supposed to be this difficult, is it?

Our beautiful, sweet soon to be one year old daughter Carly has been advised by our pediatrician to be seen by a neurologist. Let me first give you a little backround. Six months ago, we noticed these spots on her body or what is also known as cafe au laits. Sounds like an expresso you'd order at Starbucks, right? Anyways, she only has three of them but supposedbly if you have six or more, there's a remote possibility it could turn out to be some rare gentic disorder called neurofibromatosis. The hallmark of this disease is the formation of neurofibromas, tumors which arise from any of the nerve types of the body. These tumors can occur anywhere in the body, including within any of the bones. It may be associated with varying degrees of mental retardation, which is related to the underlying disease and not the tumors. The tumors are almost all benign, but may degenerate into malignancies later in life. The good thing is that she only has three, but they can number over a period of years. Cafe au lait spots are not unusual and most kids have them, so I don't mean to frighten anyone. We're pretty much convinced she doesn't have the makings of this disease because of how rare the disease is and generally it is gentic. I should mention that she does have an appointment to see a Geneticist on February 10th. We made that about 4 months ago.

On to what is really scaring the hell out of us. About a month ago, I started noticing that Carly would do this head bob for no apparant reason. I didn't think much of it, but mentioned it to my wife. We both noticed it more frequently over the next couple weeks. She'd just be sitting in her high chair or crawling around and all of a sudden her head would bob up and down uncontrollably. She'd had have this blank expression on her face. After the episode was over, it'd take her a second and she'd be her normal self again. My wife said she'd have her looked at when she brought her in for her 1 year check-up. Well, between that time I lost my job. My insurance ends February 1st. So, we decided to bring her to the doctor this week. We brought her in and of course she didn't have an episode. But what we described to her doctor at least to him sounds like seizures. He commented that he was a little worried considering she also has the cafe au lait spots. Seizures it turns out is just one sympton of Neurofibromatosis. If it's not this disease, then it's obviously something. How severe of course we have no idea. In any case, her doctor advised us to video record her to show to the neurologist.

That was Thursday. We have an appointment to see the neurologist on Monday. Monday seems like a year away. Right now, I can care less if a job prospect calls me back or not. I could give two flying sh*ts whether or not KU beats Texas tomorrow evening. I've tried everything from playing video games to posting on here to try and divert my attention away from what I'm really feeling and thinking. I'd give my life in a nanosecond if it meant she would be given a clean bill of health. Of course I know she's probably going to have to have an EEG or whatever else. That'll be painful enough to watch for the both me and my wife.

So, now here I am. I can't sleep. I have this tightness in my throat where it feels like I can hardly breathe. I know it's anxiety and fear. I've never been so scared in my life. I just can't get out of my head that this has the possibility of being something that could be really painful to hear. That this has the potential to turn our lives upside down, but more importantly hers. We have a 3 year old son who I love just as equally, but there is something I can not describe the love a daughter brings to a family.

I'll be the first to admit I'm not very religious, nor am I Christian. In times like these though, it shouldn't matter. As long as I know you have Carly in our thoughts and prayers, that means so incredibly much to me.

Thanks for reading this.

skidmark · Post by **skidmark** » Sat Jan 29, 2005 2:24 am

I'll definitely remember her in prayer sportdan...

webdanzer · Post by **webdanzer** » Sat Jan 29, 2005 2:27 am

You and your family will be in my thoughts, and I hope things turn out well.

Granatofan · Post by **Granatofan** » Sat Jan 29, 2005 2:39 am

I'm practically speechless. Nothing hurts more than this stuff. I'll say prayers for your daughter sport.

Ted

Sport73 · Post by **Sport73** » Sat Jan 29, 2005 2:51 am

Sportdan,

As a dad of a little girl myself, I can't even imagine how difficult this must be for you and your wife. Our thoughts, prayers, and wishes are with you...

Also, if there is anything we can do to help never hesitate to ask. Beyond a good place to vent, I think the people in this forum can be generous with time, knowledge, money or resources.

Best of luck, and though it's obvious just try to remember that you can't control the outcome by worrying; hopefully Monday will arrive with good news.

Post by **ScoopBrady** » Sat Jan 29, 2005 3:12 am

Sorry to hear that dan. I have a daughter as well and I freaked out when I got her sick last weekend with a high fever. I'll keep your daughter in my prayers and hope all turns out as well as possible on Monday and in the future. A little playtime with your daughter this weekend should help pass the time and ease the stress.

Post by **Jared** » Sat Jan 29, 2005 3:44 am

Sport,

If you want, here's a good site with lots of info on neurofibromatosis. I hope that she doesn't have it...but if she has the milder form (which is very possible, since it's much more common), it can be relatively benign. It's got basic information, links to other sites, and ongoing studies with childrens and adults on the disorder.

http://www.ninds.nih.gov/disorders/neur ... atosis.htm

Keep us updated, and we hope it's nothing serious.

GROGtheNailer · Post by **GROGtheNailer** » Sat Jan 29, 2005 5:35 am

sportdan30, the odds are way in your favour that everything will be fine. There is no bigger love than that for a parent and their kids, over-powering sometimes and the best thing that will ever happen in our lives. I'll be thinking good vibes for you and yours brother.

James_E · Post by **James_E** » Sat Jan 29, 2005 9:15 am

All of us with kids understand your pain Dan. Even the slightest worry about my kids pretty much takes over and wrecks my life until it gets resolved, and I have not had to deal with anything like what you are dealing with.

It really does show you what's really important in your life.

I pretty much have tears in my eyes from reading your post. I'll be thinking of you alot and anxiously await the good news that I'm betting will come on Monday.

pk500 · Post by **pk500** » Sat Jan 29, 2005 9:44 am

Dan:

Man, that's tough. As a father of two, soon-to-be three, I know the feeling of helplessless when your child is sick or hurt, as you just want everything to be OK for them.

I sure hope everything is OK with your daughter. Hang in there and have faith. Someone above is watching out for you guys -- believe that, even if you're not religious.

I'll remember your family in my thoughts and prayers.

Take care,
PK

Pete · Post by **Pete** » Sat Jan 29, 2005 9:55 am

With a tear in my eye, I say a prayer for your family with a double prayer to your precious daughter. Carly, we are all thinking of you.

I was in a meeting at work on Thursday, daydreaming, and I was thinking if there was one thing that I could wish for for the future, what would it be. It was quite an easy decision. That my two chiildren, that have given me so much joy, be happy.

ubrakto · Post by **ubrakto** » Sat Jan 29, 2005 10:16 am

Dan, just wanted to add my voice to the rest here in my hopes that your little girl is okay. I've got a 1-year old daughter and the wife and I are bouncing off the walls at the notion that we might have to put tubes in her ears (5 ear infections in 4 months), which is pretty much the surgical equivalent of trimming a toe nail. I can't even imagine what this must be like.

But like the others are saying, hopefully the worst part will be the worrying and heartache and that everything will be okay in the end. Till then, just spend as much time with your little ones as you can. I'm sure I don't need to tell you there's nothing that's as rewarding as getting a laugh out of your toddler or getting your infant to smile at you.

Add another prayer for your girl and family from Indiana.
---Todd

XXXIV · Post by **XXXIV** » Sat Jan 29, 2005 11:02 am

Dan
I hope it all works out for you and your family.
Your in My prayers.

For what its worth.
I had a co- worker a few years back whos young daughter had Neurofibromatosis. If I didnt know she had it I would never have noticed. She was a normal happy kid.

Leebo33 · Post by **Leebo33** » Sat Jan 29, 2005 11:07 am

Our prayers are with you Dan.

Jason · Post by **Jason** » Sat Jan 29, 2005 11:14 am

Best of luck. I wish you and your family the best.

snate · Post by **snate** » Sat Jan 29, 2005 11:28 am

Dan,

My thoughts and prayers are with your daughter. Let us know how things go.

Steve

Jackdog · Post by **Jackdog** » Sat Jan 29, 2005 11:30 am

Dan. Your family is in our prayers. My son is everything to me. I have no words to describe how much I hope your little Carly is OK. Hang in there the best you can. Please keep us posted.

Jack.

pigpen81 · Post by **pigpen81** » Sat Jan 29, 2005 11:36 am

Dan, your daughter and family will be in my prayers tonight.

Hang in there.

davet010 · Post by **davet010** » Sat Jan 29, 2005 11:37 am

good luck Dan, hope everything works out ok.

MizzouRah · Post by **MizzouRah** » Sat Jan 29, 2005 11:42 am

You and your family will be in my prayers Dan.

Todd

Spooky · Post by **Spooky** » Sat Jan 29, 2005 12:24 pm

Dan,

My thoughts are with you and your family. Be strong!

-Victor

Jeff · Post by **Jeff** » Sat Jan 29, 2005 5:27 pm

Hey Dan.."have faith" and hang in there. As a father of a daughter that turned 19 earlier this month, there is nothing that tugs at you like a "little girl." In 2003, on her way to school (which is about 10 miles from our hometown), she lost control of her Honda Civic and it flipped side-to-side six times and landed on its side 100 yards in the middle of plowed field.

Getting the "call" there had been an accident, then the trip to where it happened, and lastly seeing that twisted wreck of metal that was once a automobile flipped on its side, was the worst 20 minutes of my life, as well as my wife's.

She had to be "cut out" of the car and Life-Flighted to a trauma center about 30 miles away. This happened at 7:30am. By 1:30 that afternoon we were all home joking about it. She had a few cuts, bruises and was pretty sore for a couple days, but that was it. Seat belt saved her life.

We went from the depths of pure hell and then jubiliation in a few short minutes. My point is..for the wide majority, our kids are our LIVES. At some point we have, or will be faced with something, or more than one thing for that matter that will test your resolve and faith. Try to be strong and KNOW you are in everyone's prayers.

We are all pulling for your daughter, and you and your family.

Jeff

Brando70 · Post by **Brando70** » Sat Jan 29, 2005 5:43 pm

Dan, I hope everything turns out alright. Chances are greatly in your favor that it will. We'll all keep your daughter in our thoughts and prayers.

PantherFan · Post by **PantherFan** » Sat Jan 29, 2005 6:26 pm

Hey Dan,
You and your family are in my prayers. Just reading your post brougt tears to my eyes. My son is everything to me. I tell everyone that having kids is a blessing and a curse, do to the fact that it opens us up to so much hurt, and worries. I honestly hope Carly is going to be o.k. Keep your family strong.

G.M.