Mum and I had a great conference call today with Dr Chugani. The results of Tuesdays tests are in. The Dr found a focus in the front right temple lobe of Cully's brain. The exact details I do not quit understand yet but in general this is one of the better areas and it looks like Cully is a surgical candidate.
We are going to continue to work the meds and see if we can beat this thing but should we fail with the drugs we have another treatment. Removal of the right portion of the brain where the focus is located.
Brain surgery, or even more the removal of one side of Cully's brain sickened us when we learned of this treatment a month ago. We consider ourselves to be very lucky to have this as an option now. Without the surgery option we would not have any other treatments after the drugs.
Julie and I really do not know much of what is really going on as we are in the early stages of this whole thing and we get the general information from the very best doctor in the world. For all else we learn from the small number of other families that have and are going through this. We read the posts, send off an email once in a while with a question or we keep up on their blog page and see what things they are doing. We also understand that we may be wrong about some of our understanding we have about this "disease" ? What we do know is we have been extremely fortunate in several different ways with this issue and while I get very upset now and then I also have a really positive outlook at all of this. Cully is AWESOME ! And no matter where we end up he and I are partnered up real tight and will not be separated. This is who and what we are and if you could ask him if he enjoys his life I am sure he would give you a squinted eye, extended arm and a half bent thumbs up.....(Cully's trademark move)..
On another note I started this blog for a record of what goes on day to day with Cully. Something I could go back through for information for the doctors and such. It is also my personal journal for my own good and outside of myself and my wife I imagine it is seen or followed by few if any. But... if anyone is following this then keep in mind that the biggest part of the story is not written here. It's when Cully runs into your arms each day when he wakes or you walk in the door. When he sits against your arm and snuggles for that 15 seconds before he realizes he isn't running in circles or getting into the toothpaste, markers, or frosting. It's also just knowing him. If you don't, you should. Cuz you are missing it....
Cully has had two wonderful days since the last increase in Vigabatrin. We have not seen a seizure. He is moody as hell. But its all better when Daddy plays monster with him and chases him around the room. His intake of crayons, playdoe, and bugs seems to have declined and he and I are working hard on something called "patience". A deep breath and relax while we wait for a video to load on the IPad or wait for the rest of the gang to get ready to go bye-bye. Repeating the word patience while we breath and stop the tears. Cully has gone potty in the toilet three times this week on his own. The first time while in the bath tub with Sawyer he got out and stood in front of the toilet all by himself. CULLY.... YOU ARE AWESOME........! Good job son...
No comments:
Post a Comment