So...I'm going to just be rambling here so bear with me.
Some of the things I'm trying to work through to figure out if this will be right for him, are he had double the dose he would normally get. I don't know if I feel he was loose enough for it being a double dose & he seemed very sleepy, was it because he had been sedated or because he was up 3 times that night before & up by 5:30am that morning or was it because he had to lay flat for 4 hours & was bored or was it the medication. I guess I was a little disappointed that I wasn't able to play with him more, I mean I understand now, why but I didn't ever know before that morning that he would have to lay flat for 3-4 hours. It did seem to be so amazing for the most part though, he was so loose & just so comfortable. He was a wonderful boy, he just laid there on his bed watching the portable DVD player our neighbor let us borrow. I laid him on each of his sides & he didn't even need anything to hold him up onto his sides. He was still giggly but not like normal.
The PT was suppose to stop by every hour, at first he was there a lot then he never came back. Dr. Murphy said it was a positive dose. I have an appointment with the surgeon & then with Dr. Murphy the Tue after that so I still have time to keep figuring out if it's right. It's just to HUGE of a risk to take if you aren't TOTALLY sure. And like Amy said it loosens every where so with his trunk being too loose in the first place it was harder for him to hold himself up but then again maybe he just needs to get used to it. I know that if we decide to go with the pump he will be a totally different child but I don't want him drugged, he just seemed so blahhhh. Also with him being a different child with the pump, I'm working on getting intensive therapy for a few weeks & then all therapies 2x a week & then also school next year. As I have said a million times our state medical assistances isn't the greatest. I have decided that I'm done trying to work with St. Luke's for his therapies, I have called Corbie's doctor & requested a referral to some where else. After thinking & talking to my councilor I have also decided to get a referral to see the doctor that would do Baclofen pumps here. See what it is, is that Dr. Murphy is affiliated with St. Luke's & all the rest of Corbie's doctors are through SMDC so it's hard to know what to do because now I'm leaving the therapy there & I wasn't pleased with St. Luke's for the trial much either but Dr. Murphy has been a great doctor so I'm torn there too. UGH!!!
The test dose lasts about 8 hours but he was still looser then normal 12 hours later.
Caradie and Corbin