Plans for my son's surgery is in the works

My son is 14. He was born with Cerebral Palsy. It has helped the scoliosis along. It has been going on for a long time. The doctor we had before was not showing or explaining much to us. We were not seeing what he was. The new doctor has sat down, now for over 2 hours and went over everything. Just please pray that things go well!!

Sure. We are all with you praying for his well being. I'm sure it will go smoothly. Keep us updating on this...

Thanks so much!!

Thanks so much!!

your most welcome

Thanks so much!!

You are quite welcome!

Thanks so much. It is still very dangerous for him, but at least right now we only have to have one done.

Take care my friend

Here they are even using the pump on stroke victims to help with their spasticity. It doesn't matter the age. I hope yours goes as well as my son's did. It made a world of difference. When he first got up after his surgery, he was like a bowl of spaghetti.

My son is 14. I am glad that you have responded. My son is on his second baclophen pump. This will be his 6th year with it. My son did have spasms pretty bad, mostly in his legs. It controls that and will tell you on his device that it makes him feel better. It has been wonderful. If you have any questions or I can help you in any way let me know. I am sending you a friends request and hope that you accept. Thanks for stopping by and keep those good wishes coming. It definitely is a challenge to deal with. It is hard to make these decisions and know whether it is right or not, there just aren't alot of people that have been through what people with CP have been.

Hi there and thanks for your kind words and support as well. It seems that your son's Cerebral Palsy is following a more traditional path than mine. Let me see if I can give you a synopsis of a huge history of events in a couple of short sentences. CP, is supposed to be a one shot deal, brain damage somewhere around the time of birth. What ever part of the brain was damaged determines the severity of the CP and functionality ETC. I am now 30 and so a bit further ahead with this thing called life. (And let me tell you right here, right now I have an offbeat, quirky sense of humor about myself and about my body because if I didn't develop that I would've been in the loony bin by now, so take me with a grain of salt! ) In a nutshell, I'm a medical mystery. There's a bit of a technology lag as we did not have CT scans from my birth because they were not done routinely. But, what we do know is that I have significant brain damage, such that I should not be able to do many of the things that I'm able to do. There is no cognitive impairment and yet my spasticity is off the charts. Most children with Cerebral Palsy have trouble with their spasticity in childhood or at the very latest during puberty because that is when our bodies grow into themselves if you will and significant spasticity can be seen. I am unique because my spasticity skyrocketed approximately five years ago after having an unrelated orthopedic surgery to fuse my ankles. It is a definite medical mystery as to why I can change so significantly but I have. Personally I believe that everything happens for a reason, and I also believe that perhaps I was meant to find you as well. The reason I was waiting so long for my pump was because although we have free Health Care in Canada, as most of the people needing these pumps are children, there was no money or budget for an adult who needed the pump. I unfortunately, had to get very loud and threaten to go public and they just a agreed to do the surgery on Friday. So now I wait for the call that they have scheduled the surgery.... Which is why I am now so anxious. It is a bit more risky to give a pump to an adult as children are more adaptable to it, but on the other hand I need it in order to go back to work and be a contributing member of society. I have my Developmental Services Worker diploma and was in the process of getting my degree in Disability Studies. I believe the best people to administer services and to help those navigate the system are those that have been there ourselves. Thank you for listening to me and my offer stands to you as well. You are free to rant, vent say or ask anything as needed... Until next time, you're in my thoughts and happy Mylotting.

Thanks so much! I really hope thing do turn out good!

Thanks for the prayers.

My son's surgery is getting scheduled for Mid March. We are not completely sure of the date yet. I would appreciate the prayers.

It was better news, not great, but at this point any encouragement is better than we had. Thanks .

Thanks so much!!

He is 14. He is nonverbal, but uses a communication device to talk. He has already had a couple of surgeries, and seems ok with it. He knows what you say and understand pretty much everything, but cannot express himself too good. I just keep going over things to make sure he understands. It is all so frustrating. Keep the prayers coming. It definitely was better news.

Thanks for the prayers. I would love to trade him places. I just could not live with myself knowing we did nothing.

Have faith, trust your gut. Know that there are people that like you and care about your son. And God loves you all. Rest easy, it will be alright.

It was a bit better. He still has a very big risk of infection or damage to him neurologicly. It is terribly scary. Keep those prayers coming.

It is scoliosis. I had another post about the 1st doctor visit. We have seen new doctors, and they basically told us that if we don't do it now, it will be too late. The curve is bad enough that in about 6 months, no one will touch him to try to fix it and we will just watch him go downhill to the point that it finally takes his life. The doctor we went to before did not explain or show us any of this, we knew he had scoliosis, and they wanted to do surgery, but even second opinions had told us no. Two different Doctors in this new hospital have looked at him and his xrays and have come up with the same answer. It really threw us for a loop.

It made me feel really good today when he shook my son's hand and told him he was part of the family they have there. It was so nice. He is really good with him. With him not being able to talk, you could just see him light up. It helps to have a Doctor that seems to care a little, and talks to you like he would want to be talked to if it was his own kid.