Quick Update

So much to blog...so little time! I am so terrible at keeping things updated. So much for the "journal" experience. A quick medical update since New York...
We had the 22 vials of blood taken and so far, nothing of significance has panned out. We saw our pediatrician who agrees with the auto immune theory. He has been in practice for about 35 years and has seen cases before of people who have symptoms years before any test results come back positive. We have switched our focus from finding answers to managing symptoms. We took her off the gabapentin and amitriptyline and put her back on the trileptal. This has helped with her memory loss and tingling. I think a lot of the newer neurological symptoms we were seeing were more medicine induced than related to her illness. She still gets the sharp shooting pain and then the swollen spots (like on her hand, both feet, the back of her leg, and her forearm) and we haven't been able to find anything to help with that. Both doctors think that it is rheumatically related but there is no test that has confirmed that. We finally found the domperidone in Canada so that it is significantly cheaper. ($38/month vs. $35/week) We switched her nausea meds to the patch so hopefully that will help. She has gained back 11 pounds since we last saw the GI doc which is good! Dr. Sorenson did another bubble test and found that her device is in place with no leaks so we are cleared for 9 more months!! I still need to call about getting the spinal MRI done...I have just been busy and haven't had a chance! We started doing biofeedback therapy and I am interested to see how it goes. The theory behind bio feedback is to retrain your brain. The therapist was telling us about some of her other patients and it was pretty interesting. She has a girl who has excruciating pain in her 3rd toe. This therapist has taught her to block the pain sensor to that toe so that she can't feel it most of the time. Interesting stuff!!!
Jayden has been going to dance and cheer and has done pretty well. She takes it a bit easy and is still really tired when she comes home but we are at least functioning!!! School is out...YAY! Every doctor says that summer is the best time to heal without the stress of everyday life. We are hoping that is true. Between cheer practice, dance performances, Disneyland, Cheer camp, Youth Conference, Girls camp, and family vacations, I hope that we have a chance to catch our breath! Yay for summer!!