Sounds like you are doing all you CAN do for a 21/2 year old.  I mean, most things for treatment other then botox and some ortho surgeries aren't usually done until the child has gotten bigger.  I know people that when botox didn't work they went to the baclofen pump, which they found great results in, but there are always risks with those pumps, infections malfunctions, etc.  There is a doctor in St. Louis that I am taking my son to see this next fall named Dr. Park ( although rumor has it he is going to be leaving St. Louis ) he does a surgery called a Selective Dorsal Rhizotomy.  But the child has to be assested well, and after surgery follows a 4 week intense therapy session.  My son is almost 3, and he doesn't walk either, and at first I thought he was suffering because I do have a 4 year old who is " normal" and I could see the pain in Cody's eyes when he just wanted to get up and run and  play with his brother.  But Cody has adapted well, and so has my 4 year old.  They now play with each other just in a different way, so he isn't suffering, he just has to do things differently.  There are other treatments out there, but it has been my experience that when the kids are as young as ours, they like to give them the best chance at progressing on their own before doing major treatments.  Like I said the Baclofen pump is a good choice if you can out weigh the good with the bad, but at least Cody's  neurosurgeon wont even consider it until the kids are at LEAST 40 pounds. But every doc is different.   I think therapy with the professionals and therapy just as a daily routine help.  Cody didn't even need botox the last time we were in, because I had started him on such a good stretching program, but he has surgery last month and he was laid up for the entire month and so he has tightened up, and he has gone through a growth sprurt at the same time so now we need the botox. Cody likes to ride a bike, he can't really ride it on his own, we have to push him, but the pedal rotations keep his legs moving, and keep him active.  They make special bikes just for kids like ours, and Dr. Jan from St. Louis who is a CP sufferer herself, and the BIGGEST advocte for research and runs the CP clinic at St. Louis Children's Hospital, says just keeping kids active and exerciseing them can be the biggest improvment.  You can always go to see her too, but she was just here in March, doing a CP confrence, and she has a one year waiting list.  So that is another option.  Also I dont know where you live, but here in Cincinnati the UCP helps fund a program here for kids with CP from infants until about 6 where they get therapy in a group setting, so they still get their one on one attention but they also look up to their peers and can learn from them at the same time. Before Cody started there he could barely crawl, he was 19 months old, couldn't hold a cup or bottle, couldn't even put any weight on his legs to stand assisted.  Now after a year he crawls faster then most can run, he eats and drinks on his own, and can stand independently for 30 seconds.  So you could always look for a program like that. The nice thing about Cody's group is that I dont' have to be there with him I get to take a 2 hour break while he is in "school".  Hope that gives you some stuff to think about and some stuff to talk to your doctors about.  Best of luck. 

 

Michelle

mom to Peyton 4, Cody 2 ( almost 3, with CP, hydrocephalus, former preemie of 27 weeks, beating all the odds. ) and little Riley due to join our family in late August. 

mistyhelt <mistyhelt@...> wrote: