Ortho visit today 8/16/08

[scottyliammom]

Ortho visit today!!!

Well, we had our "big" appointment at the Scottish  Rite Hospital with Dr. Rathjen, the orthopedist.  We wanted to see about getting Scotty's clubfeet corrected.  In order to do that, they would have to cast him at the top of his hips down to his toes.  His leg contractures prevent him from straightening his legs at all so he would have to have the webbing behind his knees surgically cut in order to straighten his legs.  Then he might have possibly had to have more surgeries to straighten his feet - it gets pretty involved.  Anyway, the doctor talked to us and told us that even after all of that and wearing casts and braces during the day and at night, his legs will revert back to what they are now.  So, basically all of the pain he would endure would be for not.  I cannot see putting him through all of that, I really can't.  He is going to have to go through enough.

Then Dr. Rathjen planted the seed of disarticulation in our heads.  Disarticulation is where they remove the legs at or above the knee or in the hipjoints.  I have stated in previous blogs about being against this.  I said plant the seed because that is what the docs basically do.  This isnt something they would do tomorrow.  This is something that is on the horizon in a couple of years if we wanted to do it when he is at the age of basically not remembering it - or having a very clouded memory of it.  There is a window after like 3 years of age to 10 or 11 where it is just too traumatic for the child to remove their legs.  After they reach 10 or 11, then it can be brought up again and they can be more involved in their decision.  I am having a rather hard time with this, really.  I talked to another mommy, Michelle, and she wrote a blog about how she deals with her son's caudal regression - he is just a kid in a chair that cannot walk - not a handicapped kiddo.  I guess that is the way that we have been looking at Scotty - just a normal kiddo who happens to not be able to move his legs.  Now we are presented with this dilemna.  Sorry, I am getting a little emotional, but seriously, how do you make that decision?!?  I would much rather they take my legs, but, alas, that is not the case.

Ok, on a brighter note - we had a wonderful day otherwise.  We met up with Micah and Tanner and their parents and met little Kalen and her mommy and daddy too.  Micah is 4 and had caudal regression and Kalen is 19 months and has it also.  They are both such beautiful children with incredible parents.  I feel so lucky to have met them.  We all share so many of the same experiences, it was just so great, I cannot even explain how lucky Scott and I feel after our unofficial meeting of the "Caudal Regression Network of Texas".  Ha - that is our name that I gave our little luncheon today.

So, thanks for letting me vent a little.  I haven't had time to really digest everything we took in today either, so.......

[JudesMomma]

Aug. 20, 2008 at 11:33 AM Wow, that's a lot to deal with!! I'm sorry that you will have to make this decision, but I know that the one you make will be the absolute right one. I'll keep you guys in my thoughts, kiss that precious, adorable boy for me!

[AmbitWorks4U]

Aug. 24, 2008 at 3:41 PM

That is a lot...As parents (Moms especially) we have the unique ability to listen to our gut when it comes to things like this...so even though it will be hard to decide, I know that your Mommy gut will be there for you and help you make the right decision.  Best wishes to you!