Baclofen Pump Surgery

Well, I have been waiting and talking, talking and waiting for this day to arrive. Tomorrow Kyara goes in at 9am for her baclofen pump surgery. After all of the wanting and waiting, I am now TERRIFIED of another surgery. I am praying that the surgery AND the RECOVERY will go smoothly. Kyara has not been known in the past to recovery quickly from surgeries and I pray that this time she will beat those odds! At this point, I am nervous about our decision to put her through this surgery. I saw the trial and how much more relaxed she was, but this is an elective procedure. If things don't go well, will I be able to live with myself? I do know that she is uncomfortable alot of the time, and that the best thing for her is to get the pump. So - I will be praying hard tonight and in the morning that God will watch over my little one and hold her tight tomorrow. He knows what is in her best interest and I thank Him each and every day.

I am rambling again. I hate feeling like I am fighting with myself over Kyara's care, but who wouldn't. You have to weigh the pros and the cons. The risks and the benefits. I pray that this time the benefits will win out. That is what is suppose to happen, after all.

Today Kyara had a decent day in therapy. She worked some more on rolling and holding her head up. She also had some testing done. The Coma Recovery Scale is done each Tuesday to see if she is improving each week. She has certain tasks that they need for her to do to get points on the test. She improved this week by 3 points! Yea! Sadly, she is still considered by the test to be in a vegetative state. I don't know if I agree with that. I don't think she is wide awake and alert to her environment all of the time, but I don't think she is vegetative either. She is beginning to respond to commands better (not great all the time, but better), she is localizing touch, she is fixating on objects, and she is beginning to have more puposeful movements. What I have to remember is that the test is like a snapshot picture taken once a week. She has done things in therapy sessions that she did not do during "test time", and these things cannot be counted (even though the therapist doing the test are the same ones that have seen her do tasks during therapy session). This is VERY frustrating to me. I wonder how Kyara will do next week and the week after, after the baclofen pump is in and they have a chance to get the medications right. I hope she will have better motor responses. Either way, in the long run, I know she is improving each week and the score is still showing that. So, what more can you say? Keep working hard, Kyara.

I met a couple of other families who have children here in the rehab unit. The families are all very nice and the kids here are amazing. The kids range from burn victims, car accident survivors, a car surfing survivor, ATV accident, and anoxic brain injuries. The improvements that the kids make is astounding. I can't believe my eyes. God works miracles here everyday!