A little Update

At Aaliyah's six month appointment we found out while she had gained some weight it wasn't enough. We started to make some changes that are helping her but it still is not enough. After much thought, research, and talking to other parents and doctors we have decided to go ahead with a surgery to put in a G-tube. It will be there to supplement her feeding and no we do not know for how long. It could be months or years. Only time will tell. As of now the surgery is set for June 14.

I few weeks ago I witnessed a small episode, then a brief one the next day. I caught on film. That Friday she proceeded to have several in a short time. This time her therapist was there, and we agreed she needed to be seen. Aaliyah saw her pediatrician that afternoon and she immediately put a call in to her neurologist. Within an hour we had an EEG scheduled for that Monday. When we went in foe the results we found out Aaliyah is having “infantile spasms”, a mild form of seizures that if left untreated could become full blown seizures. She started a medicine that is working and we will be doing four more weeks. 


Yesterday she had another EEG, it  was better but not normal which is not bad. Okay so we continue the crappy med that makes her a demon spawn from Tartarus. Seriously can not put her down at all. It causes insomnia and a whole host of other crazy things. Two weeks and we start to taper it off. Two weeks after that we go back in.

She will be starting an actual seizure medication for the foreseeable future. In part because something is going on and also as a kind of buffer because she is at a very high risk for bigger ones. The medication also helps with the infantile spasms.

Now we are waiting for approval on a longer EEG that is overnight in the hospital. We could wait but both the doctor, Robert and I agree that the 45min scan can only show so much. I also feel that considering we know she is having mild seizures I would like to have this on file, if they ever get worse. Give us a base line for what she is like. 

For now that is all. Next month is crazy time for us so we shall see how the blogging goes.