Sara update with pics...
Mr. Luos
11-07-2007, 06:11 PM
She turned 9 months old on Halloween. Getting big. 18 pounds now.
Her medical issues aren't pretty, but she is as happy as can be, so we have that to be thankful for, as well as her as well.
We have determined that she has neurofibromatosis. Which is the reason her right leg is larger than the rest of her. Bone structure is good.
Basicly, she has non-cancerous tumors on her sciatic nerve endings at the base of her spine. These cannot be removed without taking the nerve, which would hinder her legs pretty much useless.
Her kidneys are backed up, but we are very close to having that figured out. It is related to the neurofibromatosis. The tumors are taking up space near the bladder and the kidneys creating problems.
We also discovered a dislocated left hip.
Treatments...
Neurofibromatosis.
No real treatment other than keeping a very close eye on it. Children's has a clinic for NF1, so that will help a bunch.
Bladder/Kidneys.
Sara has been on medicine to allow her bladder to relax, and it seems to be working fairly well. But not well enough to keep the kidneys from risk. So it is looking like a minor surgery to assist the bladder. Nothing serious, she should be back to normal the next day.
Dislocated hip.
Full body cast to push the hip into place, and keep it there. If this doesn't work, there is surgical options that also involve casting to make sure it stays in place.
Right now we are trying to get this taken care of quickly. Doing what we can to bump up appointments and what not.
These pictures were taken over the weekend at Kiddie Kandids.
http://www.arbybean.com/ar/images/Sara03-2.JPG
http://www.arbybean.com/ar/images/Sara08.JPG
FANGS!!!!! :lol:
http://www.arbybean.com/ar/images/Sara05-4.JPG
http://www.arbybean.com/ar/images/Sara04-2.JPG
Her medical issues aren't pretty, but she is as happy as can be, so we have that to be thankful for, as well as her as well.
We have determined that she has neurofibromatosis. Which is the reason her right leg is larger than the rest of her. Bone structure is good.
Basicly, she has non-cancerous tumors on her sciatic nerve endings at the base of her spine. These cannot be removed without taking the nerve, which would hinder her legs pretty much useless.
Her kidneys are backed up, but we are very close to having that figured out. It is related to the neurofibromatosis. The tumors are taking up space near the bladder and the kidneys creating problems.
We also discovered a dislocated left hip.
Treatments...
Neurofibromatosis.
No real treatment other than keeping a very close eye on it. Children's has a clinic for NF1, so that will help a bunch.
Bladder/Kidneys.
Sara has been on medicine to allow her bladder to relax, and it seems to be working fairly well. But not well enough to keep the kidneys from risk. So it is looking like a minor surgery to assist the bladder. Nothing serious, she should be back to normal the next day.
Dislocated hip.
Full body cast to push the hip into place, and keep it there. If this doesn't work, there is surgical options that also involve casting to make sure it stays in place.
Right now we are trying to get this taken care of quickly. Doing what we can to bump up appointments and what not.
These pictures were taken over the weekend at Kiddie Kandids.
http://www.arbybean.com/ar/images/Sara03-2.JPG
http://www.arbybean.com/ar/images/Sara08.JPG
FANGS!!!!! :lol:
http://www.arbybean.com/ar/images/Sara05-4.JPG
http://www.arbybean.com/ar/images/Sara04-2.JPG
goldz28
11-07-2007, 06:33 PM
I am sorry to hear that she is having all these problems. She is a beautiful girl, you sure you're the dad? Just kidding.
I hope everything works out for you guys, it has to be rough going through all the stress of this.
I hope everything works out for you guys, it has to be rough going through all the stress of this.
Blackcrow64
11-07-2007, 06:39 PM
Cute kid. It is always sad to hear of these sorts of problems in such a young child. :( Hopefully you guys are able to get most of it taken care of soon.
skibum1111
11-09-2007, 10:03 AM
Sorry to hear what you are going through. My 13 year old daughter had kidney issues and had surgery at Children's in Boston, so I can relate to what you are dealing with and how it affects your life. Hope everything works out ok for all of you. She's too cute for it not to work.
doodad
11-12-2007, 11:57 PM
Cutie!! God bless her and her parents man!!!!
aveo 07
11-27-2007, 05:40 AM
Hey man sorry to hear about all of that, I will be praying for her and for you too. Hope you can make her have the best life ever, I got two daughters and they make me the happiest man on earth, all it takes is a smile from one of them and my day is soooo much better.
Mr. Luos
11-30-2007, 06:49 PM
Thanks.
She is doing well. Her casting date has again been moved. January 11th now.
Happy as can be though. That day of casting will be rough though. She can't eat all day until after the procedure...
She is doing well. Her casting date has again been moved. January 11th now.
Happy as can be though. That day of casting will be rough though. She can't eat all day until after the procedure...
goldz28
11-30-2007, 07:04 PM
What time of day are they doing it. Should do it first thing in the morning. If they wait till late morning or afternoon she is going to be one pissed off lil girl. That will not be good.
Mr. Luos
12-01-2007, 08:57 PM
Afternoon.
She can have juice and such until 2 hours before.
She can have juice and such until 2 hours before.
666_speed
12-07-2007, 11:21 AM
Sorry this is so late, I've been away for a while.
Best of luck to you and your family. I'm sure it will be okay.
Best of luck to you and your family. I'm sure it will be okay.
doodad
01-02-2008, 11:26 AM
dude she is a cutie!!! Lucky daddy!!
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