I haven’t written in here much lately and really haven’t written in my other blogs either. I am not sure why but I do feel kind of bad not keeping up with the kids blogs. I really wanted to have something for them to look back on.
I guess long story short, it has been busy, stressful and rather overwhelming at times.
Overwhelming is how things have been with Sam of late. A lot of wondering, guessing, doctor visits, tests to try and figure out what is happening with him.
Recently, he had an EEG done to see how his seizures were doing, along with a MRI to run out an possible tumors (there was a lot that maybe he was having headaches and maybe that was due to tumors being with his PTEN he is at higher risk for them), and then had an ABR hearing test.
The good news was the hearing test showed things were normal. So that was nice to hear.
The EEG showed no seizure activity which on the surface is a good thing but being he was coming out of sedation that can affect things. So who really knows if there is any or not.
They typically don’t sedate for an EEG but with Sam, that’s pretty much the only way that you are going to get him to sit still.
Now the MRI.
That was a rather conflicting in terms of how things were explained.
Thankfully after a long wait at the genetics doctor, we got some answers in a way and also some direction of where to go from here.
Sam’s left frontal lobe of his brain is malformed and there is scarring from seizures in that area. The doctor showed me on the MRI how it looked and how the right frontal lobe looked. The right part is *normal*. in terms of how it should look for someone Sam’s age. The left does not look like it should. I guess this is consistant with PTEN and it was explained that basically his brain did not form right when he was cooking and then being born early did not help.
She referred us to a new neurologist to see what her thoughts on Sam are along with trying to figure out if his seizures are not under control.
She also believes he has headaches so we are working on that piece.
She has is working on getting him higher up on the list for neuro psych testing.
I asked the genetics doctor about what does this mean long term for Sam. She can’t tell the future but she belief is that he will need some sort of support long term. I asked his OT tonight in plain English what would that entail. She gave me some ideas. I feel better I guess about how OT explained it but it’s still overwhelming and a lot of emotions going on.
In the end thought, you know Sam is Sam , one hell of a lil guy who has kicked butt and took names since birth. He will continue to do so and show the world you can’t stop a Penwarden.