Soooo we finally had our apt at dornbeckers with the new neurologist. It went amazing!!!!
They spent 2 solid hrs with us and even brought in a pediatrician to also assess and collaborate. The diagnosis has not changed and I wont lie I've somewhat let myself sit in denial for the last 2 months that Aiden has been seizure free. So it was a little hard to have all the things you already know spoken out in the air. But the new neurologist is very very personable and said he is very happy with what we have done so far and how well Aiden is doing. Which is great to hear!
Some of the hard things to hear is that many of the things Aiden is not yet doing, and some of the things he is does show that things are not connecting correctly in the brain. He may have problems with his sight, basically the connection in his brain isn't processing the information he sees correctly. These are all things at this point I secretly know but have been in denial about.
At this point though he did say that we will do another eeg, and based on what that tells us about his brain pattern, if he's having any silent seizures were not seeing, and to put it bluntly, how messed up his brain pattern is we can start trying to work on getting that as normal as possble so Aiden can develop as much as possible. This to me is such amazing great news!!!! To not have the attitude that there's nothing more we can do, or to just stay stagnant with his treatment waiting for the seizures to come back.. my whole goal for my little squishy is give him everything in this world to do all that he is capable to do... and I finally feel like his doctor is thinking ahead and helping me to accomplish this. He also referred us to the ohsu therapy program so maby we can get him some more therapy or maby even more specialized therapy.
So although its still a hard thing to deal with I am thankful we are making some progress! And with as happy as little squishy is with his smiles and coos it just makes my every day and I am thankful for that and can't wait to see what else he's going to do....
They spent 2 solid hrs with us and even brought in a pediatrician to also assess and collaborate. The diagnosis has not changed and I wont lie I've somewhat let myself sit in denial for the last 2 months that Aiden has been seizure free. So it was a little hard to have all the things you already know spoken out in the air. But the new neurologist is very very personable and said he is very happy with what we have done so far and how well Aiden is doing. Which is great to hear!
Some of the hard things to hear is that many of the things Aiden is not yet doing, and some of the things he is does show that things are not connecting correctly in the brain. He may have problems with his sight, basically the connection in his brain isn't processing the information he sees correctly. These are all things at this point I secretly know but have been in denial about.
At this point though he did say that we will do another eeg, and based on what that tells us about his brain pattern, if he's having any silent seizures were not seeing, and to put it bluntly, how messed up his brain pattern is we can start trying to work on getting that as normal as possble so Aiden can develop as much as possible. This to me is such amazing great news!!!! To not have the attitude that there's nothing more we can do, or to just stay stagnant with his treatment waiting for the seizures to come back.. my whole goal for my little squishy is give him everything in this world to do all that he is capable to do... and I finally feel like his doctor is thinking ahead and helping me to accomplish this. He also referred us to the ohsu therapy program so maby we can get him some more therapy or maby even more specialized therapy.
So although its still a hard thing to deal with I am thankful we are making some progress! And with as happy as little squishy is with his smiles and coos it just makes my every day and I am thankful for that and can't wait to see what else he's going to do....
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