Tuesday, October 28, 2008
The good the bad and the ugly.
Things have been busy around here lots of appointments and tons more to come. Just before we went to Montreal Elizabeth had her second MRI. The second MRI was done under a general anesthetic and as it was done at the children's hospital they were able to see more. The MRI showed cerebellum atrophy which correlates to her Ataxic symptoms. Her Developmental Pediatrician is fairly sure with the new results that Elizabeth has Ataxic Cerebral Palsy. Her diagnosis does not change what we are currently doing but may help with getting help when she begins school. Even with the new results Elizabeth still has to be seen by Genetics and have an EMG done to rule out other diagnosis'. The good news Elizabeth is over 30lbs and in the 25% for weight which is great. The bad is Elizabeth's reflux has not been getting better and we are still needing to increase her meds therefore we will see Gastroenterologist to look into her reflux again. Another bad Elizabeth also had her Echo done and she still continues to have an irregular heart rate so she needs to see a Cardiologist as well. To add to her appointments and horrible tests Elizabeth needs to have a VCUG and a renal ultrasound as she is still having bladder infections and is complains of back pain. The ugliest is the Dr's concern with Elizabeth's lack of eye contact and some odd behavior's she is having. We are going to work on eye contact and see her Developmental Pediatrician in 6 mths and hopefully we won't be adding to her list of diagnosis'.
Sometimes I think he time we spent in NICU was a easy compared to everything that we go through as a family now, it should be getting better now not worse. It seems like she is never out of the woods.