Isabelle saw the actual neurologist yesterday (the whole visit could be deemed highly uneventful) he can't really tell us anything any different than any of the other doctors we have seen and that is he doesn't really have any idea on what issues Isabelle will have later on. Some background info to help catch everyone up on why we had to see the neurologist yesterday. When we had to go to Shand's Hospital July 5th for Isabelle's first seizure we were told that the seizures were expected because Isabelle has an abnormally formed brain (since she has now had a seizure we had to get setup with the neurologist in order to control them). That means the birth defect Isabelle has is the hydrocephalus and a brain malformation. There are parts of Isabelle's brain that have not and most likely will not form and in place of the brain tissue is fluid. She original had an excessive amount of fluid on and in her brain and that is why she has had the two surgeries. She no longer has excessive fluid; she just has fluid in place of brain tissue that has not developed. What that means...........no one really knows to what extent this is going to effect her development. They did an EEG while we where there and when the neurologist came by (the same one we saw yesterday) he didn't tell us anything about it other than she wasn't have seizures then (which we knew). So he put her on medicine to control her seizures and we had to go yesterday for a clinic visit to see how she was doing. But back to what actually happened.....we got to the appointment in complete Hart fashion (about 10 minutes late), they took us on back after just a few minutes (there were only two other patients in the waiting room when we arrived) did all of the standard workup info, put us in a room and we sat and waited for about 30 mins. The resident that works with the doctor came in asked all the standard questions (how's she doing, is she eating, any fever, etc.) and then left the room to go talk to the doctor. Waited about 5-10 mins and the doctor came in evaluated Isabelle asked if she had had anymore seizures I told him I thought she might have had a few small ones but wasn't sure because I don't really know what they are considering a seizure....of course he didn't help out with clarification at all. I discussed with him that the original medicine seemed to bother her tummy, he decided to change her medicine and if it still bothers her.........seems the response would be then that's just the way she tolerates medicine and there is nothing he can really do. I so love doctor visits that go like this.So at yesterdays visit he stated that the EEG showed minimal brain activity due to the fluid in her brain because the electrodes that they place on her head reads the brain waves but only picked up minimal brain activity because of all of the fluid. Confusing I know...... what they plan to do now is treat her based on her clinical evaluations and she goes back in 6 wks for a check-up and they will do labs then (blood work and who knows what else). The doctor didn’t seem to think that Isabelle’s brain tissue would continue to expand even though from her original CT scan and MRI’s at the end of April until her 2nd surgery in May the brain tissue had expanded. He said that he could see only minimal change in brain tissue from the scan in May compared to the scan in July. At least we aren’t going the other way and losing brain tissue, I continue to pray that God will continue to heal Isabelle’s brain and that she will show the doctors how wrong they can be.
Also, we stopped by the neurosurgeons office (completely different doctor and its like there is never any communication between the two) to have Isabelle's shunt setting reprogrammed, she is now on what is considered the standard setting and we don't have to go back to see them for 3 months (unless we have some sort of problem).
I will try to keep the blog updated on what is going on with Isabelle and our family in general, but please bear with me as this is a new process. I will also try to get some more of the background information on the blog so if there is anyone who doesn’t know the whole story they can find out the details. Please feel free to contact me with questions you might have, I will answer them to the best of my ability and when I have a second. I ask that you please continue to pray for Isabelle’s healing and all the others that we do not even know about that are in need of God’s touch.
4 years ago
