The Phone Call we were not Expecting!!

We had our long awaited appointment with the Neurosurgeon today the city. I wish I could say that it was a good appt and that we loved the Dr., but neither were the case. We were brought back right away and asked to change Twink into a gown, she loved that!! We proceeded to then wait about an hour and fifteen minutes before the Dr. and his assistant came in. Needless to say we were a little bit annoyed. Dr. sat down and asked us what we knew and what was going on. After about 2 min of us talking, his phone rang and he excused himself and we did not see him again for about 25 min. When he came back in he talked to us for about all of 10 minutes. Before I get into the appt lets back track a little bit to earlier in the week…..

We knew going into the appt. that things had changed drastically from what we thought was going on. The phone call we were not expecting occurred Tuesday, earlier in the week. Twink’s Dr. who is in charge of coordinating all of the various therapy’s called and said that she had viewed the MRI and talked to the MRI techs and that what looked like an arachnid cyst was not a cyst at all. Apparently Twink had a stroke at a very early age and more than likely it happened in the womb or during child birth that caused damage to the brain. She does have cystic pockets where the damage occurred. This was briefly mentioned awhile back as a possibility but then was quickly dismissed once this Dr. saw her so we did not think about it again. The news felt like another blow to the stomach, one that we were not ready for. We had spent all this time learning, reading and conversing with people about arachnid cysts and now we find out it was something else that sounded a lot worse on the surface. It felt like we were starting all over again. Basically she has a mild form of cerebral palsy, right sided-hemiplegia. We rushed to do research on CP but didn’t like a lot of what we were reading so we decided to trust first in the lord and second in the visual improvements that we continue to see in Twink almost every day. We then decided to wait till the appt to do any further research and we spent our time instead preparing our questions for the Dr.

We were hoping that we would have an awesome give and take with the Dr. but that just did not happen. He seemed a little arrogant and also seemed quick to get us on our way. We are thrilled that we have a second opinion in Boston on the 26th. Basically there are no surgeries or procedures or really anything that we can do. Twink has some brain tissue damage that is affecting her speech and her right side. The course of action is to continue with all the therapy’s and that is about it. No guarantees as to prognosis. We know that Twink is going to far exceed any of our current expectations. She is so strong willed and determined. We continue to thank the Lord for this precious life and feel blessed that she is apart of our lives and we hers.