Sara update....again (vid, no pics)

**Mr. Luos** · 01-09-2008, 08:03 AM

Sara turned 11 months old a week or so ago. Still as happy as can be.
We have been giving her meds to help her bladder relax for 5 months now, and it seems to be helping. She had an ultrasound last week to determine if she needed a splint in her bladder. She doesn't.
Her right kidney looks 100% now, but the left one (hopefully I didn't get those backwards) is still retaining fluid. Not sure why....still. The pee doctor wanted to once again delay the casting for her hip. We won't let him do this. She made it this long, she can make it another 6 weeks.

Her cast for the left dislocated hip goes on Friday.

She is yelling at me right now.

Her laughing...
http://home.comcast.net/~comenth13/SaraLaugh.wmv
[media]http://home.comcast.net/~comenth13/SaraLaugh.wmv[/media]

Julie made me upload it.

**bandit95** · 01-09-2008, 08:23 AM

haha beautiful lil girl man! my prayers will stay with you and your family and i know she'll be strong and just fine!

**FuhBreezeE** · 01-09-2008, 08:29 AM

She's gorgeous, C! We're all hoping for the best!

**OnEbAdReDSS** · 01-09-2008, 08:53 AM

When i was a baby i was born with knots in my intestins... and i was born without the ball in my hip... i had to get the hip down to my feet cast and sergury soo i know how she feels and my dad knows how you feel.. best of luck man!

**Mr. Luos** · 01-09-2008, 10:08 AM

Originally Posted by 2000SuperSportMaro

When i was a baby i was born with knots in my intestins... and i was born without the ball in my hip... i had to get the hip down to my feet cast and sergury soo i know how she feels and my dad knows how you feel.. best of luck man!

Thanks.

Might be a little personal, but any issues with walking? Pretty sure Sara will need physical therapy once the cast is off, but wondering about after that.

**OnEbAdReDSS** · 01-09-2008, 01:33 PM

a little hard at first my parents said... but it only took like 2-3 months to relearn how to walk... nothing personal this way... just work with her and just show lots of love and care... i had a bar in between my legs my dad used to do curles with my cast

**SiggyZ** · 01-09-2008, 01:37 PM

Such a cute little baby girl.

I sure do hope things get better. You and yours will be in my thoughts man!

**Mr. Luos** · 01-09-2008, 01:37 PM

I don't think she will have the bar, but I could be wrong.
Thanks!

**kain13** · 01-09-2008, 03:06 PM

Originally Posted by bandit95

haha beautiful lil girl man! my prayers will stay with you and your family and i know she'll be strong and just fine!

^^^dito

**5.0THIS** · 01-09-2008, 03:33 PM

I wish your kid good luck Curtis.

**joerockhead** · 01-09-2008, 08:30 PM

Peek-A-Boo!!!

She looks like Daddy!!!!

**Musclefan21** · 01-09-2008, 09:43 PM

what a cuite! My prayers with you and your family dude.

hey Curtis, do u mind explaining real quick what is going on?

**Tyler_LS1** · 01-09-2008, 09:49 PM

Good looking girl there, i hope and pray the best for her

**ls1blackbeauty98** · 01-10-2008, 05:17 AM

aw yall will be in my prayers! good luck

**Spaz** · 01-10-2008, 05:18 AM

your family is still the the Prayers of the Spaz...

**Mr. Luos** · 01-10-2008, 05:44 AM

Originally Posted by doodad

hey Curtis, do u mind explaining real quick what is going on?

She has neurofibromatosis.
http://www.kigsrdr.org/disorders/nf/nf_intro.htm

Basicly, non-cancerous tumors can grow at the ends of her nerves. Well, she has several of these tumors at the base of her spine that they cannot remove.
This is causing her right leg to be larger and retain fluid.
They also believe the tumors are restricting her kidneys.

Her left hip is also dislocated. We don't believe this is related to the other issues.

**Musclefan21** · 01-10-2008, 06:28 AM

Originally Posted by Mr. Luos

She has neurofibromatosis.
http://www.kigsrdr.org/disorders/nf/nf_intro.htm

Basicly, non-cancerous tumors can grow at the ends of her nerves. Well, she has several of these tumors at the base of her spine that they cannot remove.
This is causing her right leg to be larger and retain fluid.
They also believe the tumors are restricting her kidneys.

Her left hip is also dislocated. We don't believe this is related to the other issues.

this ruined my day man. such a cute little angel having these problems.

best luck man. I hope she will get well and run around like others!!

**Mr. Luos** · 01-10-2008, 06:31 AM

Thanks.
I am sure she will make out okay.

Mentally she appears to be progressing like she should, she just isn't physically. Which is to be expected I guess.

Been a tough 4 months.