Today's Victory is brought to you by the newest member of the Lost and Tired family,  Bella.  Bella is Emmett's boxer puppy and best friend.  Emmett has been really sick for the past few days with fevers exceeding 104°F on several occasions. He has coupe right now but we are suspecting strep because his throat is really sore. There have been many times,  like this morning,  when he was simply inconsolable. However,  little Ms.  Bella has managed to provide him comfort when nothing else would. So,  for that I sat thank you Bella and I proud to award you with Today's Victory. :-) **Thanks for reading**        -Lost and Tired Please join our Community Autism Support Forum Posted from WordPress for Android so please forgive any typos as…

This is more for the techies out there that like video games.  :-) I have been playing video games since before Nintendo was even know the radar. I was always fascinated by them.  Fast forward to present day and my kids have all followed in my footsteps. I'm sure you have heard me talk about Elliott and his 3DS -thanks to Best Buy- as well as Gavin obsession with video games. I have had a game console on and off for years. I would purchase an XBOX 360 or PS3 with tax return,  when money allowed for it.  Inevitably,  at some point throughout the year something would happen and I would either sell it to come bills or trade it in to GameStop because it was causing to many problems…

I'm feeling quite overwhelmed as of late.  We keep receiving more and more bad news.  I mean,  bad news is probably the wrong word choice but it's pretty darn close. The latest addition to the Lost and Tired family symptoms list is now seizures. I was positive that I was going to get the EEG results back for both Gavin and Elliott and everything would be normal.  I wasn't prepared to hear that they are having seizures. Honestly, I don't even know what to do with that information.  The only experience I have with seizures is as a paramedic.  I always say that I hate going to an appointment looking for answers and end up with more questions. That has been the status quo for as long as I can…

Sorry for the delay is getting this up but I fell asleep early last night.. :-) I already shared what happened with the neurologist,  as far as Elliott is concerned.  What I haven't done yet is getting into what went down with Gavin. Traditionally,  Gavin is significantly more complex and honestly,  that an understatement.  I'm gonna keep this short and sweet because I'm just super tired today and the words are blending together. Basically,  Gavin tolerated the exam very well.  They spent a lot of time on Gavin's reflexes,  or rather,  trying to find them. The doctor took me back to his office and actually showed me the EEG results for Gavin as well. Gavin is clearly having seizures and for the life of me,  I can't remember the name…

This was by far the worst Gavin has done at an infusion.  I had taken Elliott to the cafeteria to eat lunch while they were putting the IV in.  He didn't want to see that part. When we got back,  about 20 minutes later,  it was done and Gavin was back to his video games. The nurse told me what happened and said that she had never seen him like this.  Thankfully he didn't fight her,  he just screamed at her.  The actual infusion itself went well.  He tolerated the antibodies and felt fine,  if not a bit sleepy. It took about 3 or 4 hours total before we were done.  When it was time to pull the IV,  Elliott stepped out again because he didn't want to see anything. …

Elliott's appointment was pretty straight forward.  They got a detailed history and reviewed the EEG. I chose to go with Elliott first because he was the easiest or least complicated. Elliott was very well behaved and just played his 3DS for most of the time. The doctor was totally awesome and was great with the boys.  You could tell that he loves his job. Now for the bad news.  Elliott had 2 small seizures during the 5 minute sleep part of the EEG. Before we explore medication,  we decided that it would be best to do a longer study so we could qualify what was going on. They are going to schedule a 24 hour VEEG.  This will provide more detailed information and we'll have a better idea of whether…

We have finally made it over to Oncology for Gavin's 9th antibody infusion. The infusion was scheduled to begin about an hour ago, so we had to make special arrangements for today. They were awesome about working with us on the scheduling today. We are just waiting to get his vitals and preparation medications... Everyone missed lunch and we're all a bit on the grouchy side.  Hopefully,  this will be a quick 3 hours and we can get home before out last appointment for the day. **Thanks for reading**        -Lost and Tired Please join our Community Autism Support Forum Posted from WordPress for Android

I'll provide more details later but we are dealing with seizures,  at least with Gavin.  Gavin's were more obvious. Elliott is needing a 24 hr EEG to verify.  Elliott had 2 small episodes during the EEG and they want to see what is going on by doing a longer study....... More to come later.... Kat,  I'm going to need to speak with you.  Please.. **Thanks for reading**        -Lost and Tired Please join our Community Autism Support Forum Posted from WordPress for Android