ChiefsPlanet

ChiefsPlanet (https://www.chiefsplanet.com/BB/index.php)
-   Nzoner's Game Room (https://www.chiefsplanet.com/BB/forumdisplay.php?f=1)
-   -   Life The Requested Life Update (https://www.chiefsplanet.com/BB/showthread.php?t=268646)

WilliamTheIrish 01-09-2013 12:27 PM

Hamas,

Is the baclofen given by indwelling pump? How severe is the CP aspect? I love watching kids make those little breakthroughs. You're courageous. And so is your wife.

All the best,

Will

patteeu 01-09-2013 01:25 PM

Good luck to you and your girls, Hamas. Glad to have you back and glad the update was as positive as it was.

Rausch 01-09-2013 01:26 PM

Cute kids for such an ugly mother****er...

Braincase 01-09-2013 01:53 PM

Thanks for reminding usall what is really most important. Peace and blessings to you and your family.

'Hamas' Jenkins 01-09-2013 06:22 PM

Quote:

Originally Posted by WilliamInnerCircle (Post 9299935)
Hamas,

Is the baclofen given by indwelling pump? How severe is the CP aspect? I love watching kids make those little breakthroughs. You're courageous. And so is your wife.

All the best,

Will

It is not an intrathecal pump. I would be very hesitant to use one, as their malfunctions can have devastating consequences. We give her an oral suspension three times per day.

As far as the CP goes, the best answer is that I'm not certain yet. The tone in her trunk is much improved. Her tightest muscles, by far, are her adductors. She still has excellent range in them; in fact, if I stretch her legs she can do the splits horizontally. However, she only has about ten degrees of extension before tone in her adductors kick in.

I think she has a touch of spasticity in her left arm, but she still uses it to eat, hold cups, play with toys, and manipulate objects, but there is a definite preference.

I don't know if you're familiar with Gross Motor Classification or not. I asked our PT where she'd fall on the range. At her age it's hard to tell, but her goal is for her to walk with minimal assistance, perhaps just orthotics in her shoes.

Long term, I wouldn't be opposed to considering a dorsal rhizotomy, but that will be part of a larger cost benefit analysis.

We've talked about potential Botox injections for her adductors, but haven't reached consensus on that either.

'Hamas' Jenkins 01-09-2013 06:24 PM

Quote:

Originally Posted by ncCHIEFfan (Post 9299578)
Hamas my son is now a year old but was born 3 months premature. He was 1lb4oz. My wife and I lived in the NICU for 3 months. I understand a lot of what you and yours have gone through. Happy to hear your family is growing and I wish you all continued best.

Hope your little one is doing well. Daily trips to the NICU can be exhausting, as I'm sure you're familiar with. Our girls came at 29. I'm assuming your son came a few weeks before that?

Easy 6 01-09-2013 06:30 PM

Man, what a grinder your family has gone through and continue to struggle with... but you definitely sound completely on top of every nuance of it.

All of my very best wishes for continued good fortune :thumb:

SAUTO 01-09-2013 06:52 PM

Quote:

Originally Posted by 'Hamas' Jenkins (Post 9301158)
It is not an intrathecal pump. I would be very hesitant to use one, as their malfunctions can have devastating consequences. We give her an oral suspension three times per day.

As far as the CP goes, the best answer is that I'm not certain yet. The tone in her trunk is much improved. Her tightest muscles, by far, are her adductors. She still has excellent range in them; in fact, if I stretch her legs she can do the splits horizontally. However, she only has about ten degrees of extension before tone in her adductors kick in.

I think she has a touch of spasticity in her left arm, but she still uses it to eat, hold cups, play with toys, and manipulate objects, but there is a definite preference.

I don't know if you're familiar with Gross Motor Classification or not. I asked our PT where she'd fall on the range. At her age it's hard to tell, but her goal is for her to walk with minimal assistance, perhaps just orthotics in her shoes.

Long term, I wouldn't be opposed to considering a dorsal rhizotomy, but that will be part of a larger cost benefit analysis.

We've talked about potential Botox injections for her adductors, but haven't reached consensus on that either.

we went through serial casting and botox injections before.

you probably would not be going through the casting by the sound of it but I will say the botox made quite the difference, for about six months at a time
Posted via Mobile Device

'Hamas' Jenkins 01-09-2013 09:27 PM

Quote:

Originally Posted by JASONSAUTO (Post 9301250)
we went through serial casting and botox injections before.

you probably would not be going through the casting by the sound of it but I will say the botox made quite the difference, for about six months at a time
Posted via Mobile Device

We do casting, but our PT does it in home rather than an orthotist. We use the casts in shoes when working on cruising, standing, and walking.

SAUTO 01-09-2013 09:38 PM

Solid casts?
Posted via Mobile Device

'Hamas' Jenkins 01-09-2013 09:51 PM

Quote:

Originally Posted by JASONSAUTO (Post 9301819)
Solid casts?
Posted via Mobile Device

They are solid formed casts that you can slide a foot in an out of because the "tongue" area has been cut out. Covering the edges with padding makes them soft on the feet, and because they are formed when the foot is in an anatomically correct position, it prevents the desire to get onto the toes or roll the ankle inward.

WilliamTheIrish 01-09-2013 10:00 PM

Quote:

Originally Posted by 'Hamas' Jenkins (Post 9301158)
It is not an intrathecal pump. I would be very hesitant to use one, as their malfunctions can have devastating consequences. We give her an oral suspension three times per day.

As far as the CP goes, the best answer is that I'm not certain yet. The tone in her trunk is much improved. Her tightest muscles, by far, are her adductors. She still has excellent range in them; in fact, if I stretch her legs she can do the splits horizontally. However, she only has about ten degrees of extension before tone in her adductors kick in.

I think she has a touch of spasticity in her left arm, but she still uses it to eat, hold cups, play with toys, and manipulate objects, but there is a definite preference.

I don't know if you're familiar with Gross Motor Classification or not. I asked our PT where she'd fall on the range. At her age it's hard to tell, but her goal is for her to walk with minimal assistance, perhaps just orthotics in her shoes.

Long term, I wouldn't be opposed to considering a dorsal rhizotomy, but that will be part of a larger cost benefit analysis.

We've talked about potential Botox injections for her adductors, but haven't reached consensus on that either.

Not familiar with the classifications for gmf. But very familiar with the pumps. When you mentioned baclofen I began to wonder just hope severe the spasticity was.
The rhizometry can help a lot. But you have a few years time to determine that.

All in all, a very solid outcome for the family. Vet happy for you and Mrs Hamas.

SAUTO 01-09-2013 10:03 PM

Quote:

Originally Posted by 'Hamas' Jenkins (Post 9301846)
They are solid formed casts that you can slide a foot in an out of because the "tongue" area has been cut out. Covering the edges with padding makes them soft on the feet, and because they are formed when the foot is in an anatomically correct position, it prevents the desire to get onto the toes or roll the ankle inward.

she had those after, prior to those she went through a series of solid casts. It sucked.

we have tried tons of different braces. it's a process lol
Posted via Mobile Device

Phobia 01-10-2013 12:51 AM

Quote:

Originally Posted by seclark (Post 9299298)
this is all very true. my wife and i were both 18 when we had our twins. sometimes i feel that we all kinda grew up together.

to this day, when they get together w/their friends(they're 32) they are still both called "twin". it's been that way all their life. little bastards still call me on the phone and don't tell me who they are, trying to make me guess.

all the so called hassles, are very much worth it. makes you a much better person without you even knowing it.

best of luck hamas, and thanks for the update.
sec

Record length post.

Jiu Jitsu Jon 01-10-2013 12:59 AM

Quote:

Originally Posted by The Bad Guy (Post 9298180)
Gorgeous kids man. Congratulations on their success.

That Hulk Hogan costume is the greatest thing ever. Where did you find that gem?

I concur. The Hulk Hogan costume = WIN.


All times are GMT -6. The time now is 02:06 AM.

Powered by vBulletin® Version 3.8.8
Copyright ©2000 - 2024, vBulletin Solutions, Inc.