Tuesday, December 2, 2008

Would like feedback

After you guys watch his videos will you all give me you opinions of what you see???
(there's to much video to upload here so check them out on dropshots http://www.dropshots.com/BabyCorbin)
The reason I want every ones opinions is because I'm very torn. I need help & I need to work threw all the feelings & pros & cons. UGH!!!

I said I was going to tape every hour well I kinda feel asleep while Corb was watching his show & then needed lunch but I got the first few hours & then at 5 & 1/2 hours I taped a lot.

You all can either leave a comment here, leave an entry on his caringbridge guestbook or e-mail me personally corbinleeproject@yahoo.com Thanks

Caradie and Corbin


Amy said...

It's hard for me to tell, but he does look a lot looser than before. I don't know much about the dosing though. Was he on the smallest amount? I was really impressed with how much range of motion he had in his arms and legs. I was totally shocked at how far you could stretch him out. Do you think though that maybe they could do a smaller dose? Do you think it might have affected his trunk tone and strength some. Or maybe he was just tired from being through all that? I don't know because I don't see him in person, but it looked like his sitting was not as strong as usual--but that could be just me. Maybe just a low dose would work? Would taking it orally do anything?? Maybe too it just takes some time for him to get used to the reduction in tone to build up again. Not sure what you were going for, but I can tell that it really helped his tone overall though, which is a good thing. I don't know much about it, but I have seen it work well for many kids. I just don't know if it is like it takes a while to get used to it?? My biggest issue with the pump is that it makes everything looser--some areas that we may not want to be looser. That is why it is such a challenge I guess, and I suspect that might me why you are torn!!?? What did the doctor think about it?? And how Corbin did with it?? I would be curious about what his PT or other people working with him think. How long does this trial dose last? Will it wear off tomorrow?? But again, it was obvious to me that it worked well to reduce his tone in many places and that could help his overall function. What are you thoughts?? I am just rambling now. I was impressed though in many, many ways!!

Caradie and Corbin said...

I'm writting up a post & it will answer most of your questions.

Anonymous said...

Hi Caradie,
I had similar thoughts as Amy did. It seems as tho his tone was much looser,but could you try a lower dose and see how it works for him?
to much isn't good and to little isn't eaiser so I would say try to find a balance inbetween that works best for him and you. My question is how long does the dose work and how often can you use it?~ Darlene

Caradie and Corbin said...

Hi Darlene,
The dose on Monday only lasted Monday. It was a test dose. The actually way to get the medications is through a pump that would be placed in his side, that would deliever medication all day long to what ever it's programed to do. So this means another surgery & another recovery time. A LOT to think about.

Anonymous said...

Caradie,I totally understand why your weighting the pros and cons on this,as I am sure you don't want to put Corbie through another surgery,if this is going to do more harm to him, then good.

I will support you no matter what. Is their any way they can do a lower dose trial and see what happens? This may help.

Not sure how his muscle tone is without the dose? I would like to hear your thoughts since you work with Corbie every day you would know more then any one of us. Best wishes~Darlene