Yesterday was a bad day. I took Jayden to UCSF for an extended EEG. It's kind of a long story but let me back track so you will fully understand. A couple of months ago I started noticing that Jayden was doing something new. Every so often he would put his head down, throw his arms out and stiffen up. This would only last for second or two and at first would happen maybe once a day. But as time went on these "shocks" as I call them began to come more often. I also noticed that the "shocks"didn't occur until the first time the VNS was adjusted after surgery. At first I thought it might have something to with the VNS. After ruling that out I was completly stumped. I let the docs know and it didn't seem to concern them at the time. So as usual time went on and the "shocks" became more often. Until two weeks ago today I decided to count them, 30 times I counted on that particular day. I started to become more and more concerned. Well my worst fear was confirmed yesterday. Jayden has developed Infantile Spasms. These spasms always occur in an infant (less than one yr old) but ofcourse Jayden doesn't do anything textbook and these docs are even more stumped now than they were before, if that's even possible. There is nothing good about the prognosis. These spasms cause severe brain damage. Those of you who see Jayden know that over the last 6 months he has lost many skills. He is no longer able to sit, hold his head up, roll over, and I fear the worse is yet to come. If he deteriorated this fast in the past 6 months what do we have to look forward to? I am really having a hard time right now and I would really appreciate prayer for my little Angel. Each day that I have him is a gift from God. I am desperately trying to keep my head up and think positive but it is very difficult. Jayden will be admitted next Wed to UCSF so we can start giving him ACTH (steroid) which I will learn to give him injections daily. As if this poor kid hasn't gone through enough:( We hope and pray that this injection will stop these little seizures that he has having every single day. The docs said they have never seen this happen before, a kid this age developing spasms like this. Especially after having such an extreme seizure history.The VNS is still working to hold of those long seizures but now we have something new to worry about. Please keep us in prayer.
Brandy
