Hi Everyone-I have missed reading up on everybody so was so glad to find this link (on LilyAnna's site-thanks!).
Just want to give a little update on my Bugger. Nathan got the VNS implanted at the end of July. Our reasons were to try and wean some of his seizure meds because they really zonk him out (Klonopin and Depakote). The actual surgery went well but Nathan was not happy when they extubated him so he decided to hold his breath for all of the doctors. They interpreted this as more seizures and him not breathing so they reintubated him. I could not see him for over five hours. They put him in the PICU on oxygen and the vent. I was not too happy because I knew he really did not need the breathing tube. We were persistent with the doctors and they finally extubated the next day. Nathan did his usual tricks and turned blue while I was there. Again, the doctors got the Panic Look on their faces-and asked me how long would he hold his breath. I told them it takes him a while sometimes! I think many of the nurses/resp. therapists were surprised at how calm I was-but I have seen Natie's tricks so many times before this! Anyway, we actually got discharged a few hours after extubation (I think they just wanted us out of there!).
Nathan has done really well since being in the hospital. Before going in, he did not respond to his favorite words/songs (he had stopped doing this after his hospitalization in April) or wouldn't smile. Our bugger is back and full of smiles and even some giggles. We are even seeing some new movements we have not seen. My husband tells him to "Shake Daddy's hand" and he lifts his hand up and opens his fingers. This is REALLY big as Nathan has never demonstrated anything like this before! I do not know what to attribute it to (it wasn't the VNS as it wasn't turned on for two weeks). Maybe that pure oxygen he breathed while intubated?
Nathan also got his first wheelchair. It is a new chair called a Chunc. I think we are going to like it as it is really designed for the caregiver in mind.
Gillian turned one and is as crazy as ever (she's a redhead!) She has started hugging Nathan too.
It's good to hear from everyone again!