Too Much Fun

The circus came to town, and the big top was in our house! There were 15 people here at once, all for my brothers wedding. Cole LOVED having other kids around and was especially thrilled to have grandpa and grandma here.

He got so excited and overstimulated that he had 4 major seizures; but, he is sad that everyone has gone home.

The last 30 days or so have just been a blur. Things have gone by the wayside-even important things, like record keeping. I am not sure how many seizures Cole has had since May 6th. I just have to hope I caught them all.

This job thing is giving me stress.

Cole had something called post-ictal blindness that is rare. His eyes were fixed straight ahead and he could not see for an hour after a seizure last week. Two doctors we spoke to said that they have heard it could happen, but no one that they know has ever had it. Another "rare" thing to add to our list. Hopefully, the people at the Moran Eye Center can shed some more light on the connection between Cole's eyes and his seizures.I almost broke Cole's foot doing Occupational therapy. Just a bad sprain, but I still felt bad! He would not keep the wrap on, so he limped for a week or so.

It is official. I need my gallbladder out. The tests prove it is not working right. However, I don't have time for surgery. So, with a leap of faith and a little witch doctor assistance, I have put it off. It will probably have to come out eventually, but I am feeling better. Not as much nausea. Thank goodness! For a lover of food, to have nothing taste good and constantly feel like you are going to throw up is a real bummer. It has helped my waistline though (gotta love the little things)!

The results of Cole's first round of genetic testing came back. He has a "variance". Not a malformation, or a missing gene, just a variance. It could be fine; it could mean something. They don't know, so they have ordered tests on Brian and I. Cole's case will now be sent to a molecular biologist, to see what other testing needs to be done. The spinal tap came back clean and we are pretty sure that AHC has been ruled out.

Overstimulation and light are still problems. Not sure how to fix them....or at least reduce the effects it has on Cole.

If this post feels disconnected, it's probably because that's how things are around here. June was crazy, July was nuts, who knows what August will bring? :)