A day at the hospital

On Monday Oksana had a follow up visit in Nerology and a sedated MRI. I wish I could say I had pictures but I left my camera at home! We started our day at 11:00 to see what kind of progress had been made since the botox. I had noticed a difference in her flexibility but I do not feel it made a bit of difference in her walking. The nurse practitioner completely agreed. She said that this tells us that her primary problem is not with her hamstrings as we suspected. She talked a lot about her hips being very tight. So I asked her what this means for botox. She doesn't want to stop it yet, but she has added oral Baclofen which is a muscle relaxer. Apparently, in some people with CP they get Baclofen through a pump that is implanted under the skin of the abdomen which delivers the medication directly into the spinal fluid. If Baclofen is effective for Oksana I have no idea if this would be considered for her or not....we didn't get that far. Right now we are only looking 6 weeks ahead. We are going to see how the muscle relaxer helps and if her hamstrings have tightened significantly (this is when the botox will be wearing off) she is going to increase her dosage and see if the combo of the botox and Baclofen help her. I sure hope this is making sense.

Oksana's MRI was scheduled for 3:00. When I was talking to the nurse practitioner in Neruology I told her that I was very interested to see if we could identify any damage to the brain that might be affecting her cognitively. I told her I would honestly be shocked if we found nothing. She said "I didn't want to tell you this last time but I will be shocked too". I assured her that I do not need her to sugar coat anything for me. I'm not saying that whatever we learn might not be hard to hear or even make me cry, but we want to know everything so that we can make wise decisions for her. With that said she told me that she would call us by 6 with results.

So we were off to radiology. I could not believe how amazing she was. Those of you that have been following this blog might remember the child I brought home who was scared of EVERYTHING. The child I brought home was not there yesterday! Every doctor or nurse who saw her commented that she was their best patient all day. She sat so patiently waiting for her MRI (3 hours worth of waiting because they were running behind). She knew exactly what was going to happen. The only time I saw her even start to look nervous was when it was time for the procedure and all kinds of doctors and nurses crowded around her. Her eyes got as big as saucers but she didn't put up a fight and even commented that the gas smelled yummy! Next thing I knew she was out. I told them that because of her history it was very important to me that I was the first person she saw when she woke up. They were more than accomodating. They called me down early and even gave her extra gas to be really sure she didn't wake up too fast. The whole time we were waiting we kept hearing kids come out of anesthesia crying. I knew it was perfectly normal so I was prepared for it. When she woke up she sat up, looked around, and showed me her IV with a look on her face that said "What in the world is this?!". I told her she need to drink something before they could take it out. She took a sip of apple juice and again held her hand up with a face that said "There now OUT with this thing!". We gave her some cookies and more juice to make sure her belly was OK and then out came the IV and she was dressed and on her way home. Never even a wimper. I was shocked.

Since the MRI was so far behind I knew I wouldn't hear results last night but I really thought I would hear something today. No such luck so they are getting a call tomorrow. I'll post again when I hear something.