Today's Appointments

The appointments today went well. First we had a neurologist appt. Mostly we just talked about what his seizures look like now, whether recent med. changes have made any real difference in the frequency or behavior of Lincoln's seizures (they haven't), and then discussed treatment options. He mentioned 2 more medications that we could try. The first being Bansil (sp?), that is supposed to treat tonic (stiffening) seizures. And then the other is something we have discussed in the past (I don't remember the name off of the top of my head), but it takes 4 months to get up to the effective dose. Unfortunately, it really does sound like we are running out of options when it comes to medications. I am hoping and praying to any and all deitys out there, that one of these last few meds will do the trick.

If not, we are looking at implementing the ketogenic diet. This one really scares me and makes me sad. Basically it is a starvation diet. It will cause him to stop growing, and he will need to be fed through a NG tube (a tube through his nose, into his stomach). The thought of going to these extremes makes me so sad. Lincoln just started to enjoy eating and drinking some foods, and he wouldnt be able to eat them anymore. Or feed himself at all, and you should see his face (check out the last video of him feeding himself fruit loops), he is so proud of himself when he does it. It is just so unnatural...and he would be on the diet for 2 years or longer! He has suffered so much in his life, I would hate to take away anything that he actually enjoys. The thought of it breaks my heart into a million little pieces. So I really really hope that we don't have to go down that road...

Then we went to baby June's NST. Everything there lookedd just fine. Today she was wiggling and moving around like a champ, so it didn't take long at all. More of the same next week, and the week after. :)