And I am back…..

I didn’t realize it has been so long since I have sat down to type. Our world has been filled with ups and downs and I am not sure when, if at all, it will stop.

Started with a team meeting for Tyler to discuss his summer program.This has ALWAYS been a sore spot for me as the summer program seems like such a waste of time to me. The teachers show ZERO enthusiasm, its hot, the AC isn’t on, demands aren’t placed on the kids. Its terrible. So we went and I was geared up to fight to get him to attend 5 days. The team praised him and how well he is cooperating now being on the Resperidone. His preschool teacher looked at the team chair and said that if Tyler didn’t attend 4 days a week he would have significant set backs. So it was decided that he will be going 4 days a week, 2-2.5 hours each day WITH an hour of music therapy every Monday. We couldn’t have been happier. I think its going to be a great transition for him and am really looking forward to it. BIG

Next we have had a slew of interviews for Tony. Some seeming so promising. And nothing has panned out. So we sit and wait to hear back from other places that he has interviewed with and he continues to apply. I keep hearing things are turning around but the poor thing is really getting down on himself. These things definitely take a toll on person but I think more so men than women. Continue to say prayers!!

Now we come to last week. Started off  on Thursday with a fantastic trip to the zoo with Tyler’s preschool class. Did we ever have fun. They are all so cute and it is so much fun to watch the expressions on theil little faces when they look at the animals. Of course my heart ached wanting Tyler to see them, but he was content to be outside, surround by his friends and fresh air.

Friday we went to see a new neurologist at Children’s Hospital. We “graduated” from our original neuro because Tyler isn’t considered an infant any longer. We went in with an open mind to meet this new doctor but also with some questions regarding these “behaviors” that we thought were seizures. The doctor was very nice. Had already read through Tyler’s chart so we didn’t have to repeat his whole life story again. He played with Tyler a bit and then asked us to describe the events we were concerned about. He listens and says between what we are saying and what the EEG, from February showed, that he has a condiotion known as partial seizures as they are only occuring on the right side of his brain, the more damaged side. We asked why we were told differently in February, because if you recall the neuro at that time said it was strictly behavioral, and he said he was surprised by that. So he said it was time to talk medication. UGH..what I have dreaded all along. But we need to do something to prevent any major seizures from happening. So he gave us a prescription for Trileptal. It’s been on the market for quite a while and also is used to help with behavioral issues. So we are hoping we might be able to take him off the Resperidone but we don’t want to jump the gun yet. So we gave him his first dose of medicine last night and we are keeping our fingers crossed. There thankfully aren’t too many side effects with this but there are a couple that we will need to watch for. I never asked why these are coming on so “late” in his life, considering he didn’t start having them until this past December, but I was in shock that the other doctor gave us false information. I couldn’t believe that this happened. This is a world renouned hospital. How could 2 doctors from the same hospital, in the same department, on the same floor, read an EEG so differently. And there really wasn’t any way to misread the EEG. Tony and I read it and we have ZERO back ground on seizures. There was no denying what was typed on the screen. But there is no reason on dwelling on the why’s…we have an answer and onward we go.

We ended the Memorial Day weekend surround by friends. We hosted a cookout on Saturday, we went over our neighbors house for a bit on Sunday, and then attended the local parade on Monday. The weather was perfect and it was great just being together. I couldn’t have asked for a more perfect weekend that what we had. If only every day could be as happy and carefree. Here are a couple pictures:

 

 

 

 

Please keep the positive thoughts and prayers coming our way that not only will Tony find a job soon but that Tyler will not suffer any side effects from this new medicine and that it will help him get the seizures under control.