Home for a week!

The over due post. It's been 1 week since we've been home and the adjustment has been emotional. One week ago, Alexander was discharged from the hospital as it got to the point of him only being there for observation and test that could be done outpatient.

Alexander seems to be very happy being home. Actually, we all are happy, I'm just a mess though. There is nothing comforting about coming home to see your place in the same condition as it was when the paramedics were here. Nothing to comforting about the fact that anytime Alexander displays something different, I think something is wrong. He has a warm head-I think he's getting a fever. He moves his hand funny and I think he's going to have a seizure. Worry. Worry. Worry. I need a day of relaxation, but I don't see that in the future anytime soon.

Alexander's hand has not returned back to normal.  He gets frustrated and discouraged when engaging in some of his favorite activities. In addition, to struggling with his favorite activities, he is also having a difficult time pulling himself up and crawling. He falls over when he tries to pull himself up or falls down when he begins crawling to fast. It breaks my heart each time I see him try to pick up a ball or put a puzzle piece in place and he can't. :( I try to remind myself about how strong my boy is after going through everything he's ever been through and that helps stop the flowing of tears, but sometimes that just isn't enough.

Alexander is also not eating or drinking very well either. We believe it's one of the side effects of his anti-seizure medicine. His neurologist keeps telling me to give him time for the medicine to adjust. Difficult for me to do given our boy is VERY active and burning calories quickly!

On Friday, we made a trip back down to CHLA. Since Alexander's hand is still not back to norma,  his neurologist suggested it was time for the CT Scan with Angiogram. The results so far have come back normal-yay! However, he still believes that Alexander had small stroke which brought the seizure on. We may not ever know if he did or did not have a stroke unless he has an MRI down (something Alexander can't have done because he has a pacemaker). We still don't know where the fever came from and if any of the events that occurred was triggered from the fever. I'm determined to find out more about that!

So now that we have been home  for a week and adjusting to everything, the worrisome has seemed to lessen. Alexander's therapy session have increased to help with use of his right hand, so hopefully we will see more and more improvements with it.

Praying that things get easier for us, that we get more answers about that horrible event and that more positive outcomes begin to occur for our Superman!