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

I'm at the neurodevelopmental clinic at Akron Children's Hospital,  with Elliott and Gavin. Elliott is actually doing pretty good today.  He isn't freaking out as is usually for him. However,  he's a bit on the hyper side today.  Gavin is doing just fine,  as is the norm for him.  Gavin's appointment is first and Elliott's is after.  We will get the results of the EEG's today and hopefully,  find a direction for us to go in,  with both of the boys.  Please say a prayer that we get good news today.   :-) **Thanks for reading**        -Lost and Tired Please join our Community Autism Support Forum Posted from WordPress for Android

Akron Children's Hospital,  here we come. Elliott seems to be fine this morning. Emmett on the other hand,  is fighting his fever again. It looks like I'll be taking the boys to Akron Children's Hospital today and Lizze will stay with Emmett. Having Elliott present for Gavin infusion makes me nervous. As a special needs family,  we have to be able to evolve and meet the current circumstances. This is part of what makes things so exhausting. **Thanks for reading**        -Lost and Tired Please join our Community Autism Support Forum Posted from WordPress for Android

God, I know we have talked about this before but I feel we need to revisit the topic once again. I thought we were on the same page.  Clearly,  I was wrong about that. I know you must think that I can handle the challenges associated with being a parent to 3 special needs boys.  I appreciate your confidence in me, I really do but sometimes I really think that confidence is misplaced. Do you remember when I asked you,  rather, begged you to please not allow more than one of my kids to ever be sick at the same time?  I just had to put Elliott back to bed after he woke up from coughing,  just like Emmett. I really think we need to talk about this ASAP. **Thanks…

Emmett's fever has broken.  That's great news,  as it looks as though we can avoid the ER tonight. However,  Emmett has been vomiting for the last 30 minutes.  It's safe to say the he's returned all the Tylenol we gave him. Now all we need to do is keep him hydrated and hope his fever stays away until he can have more Tylenol and Advil,  in a few hours... It's heartbreaking to see how he reacts to being sick.  He's just snuggled with Lizze and covering his mouth so he doesn't vomit again.  My poor,  sweet Emmett John,  I hope you feel better soon.  **Thanks for reading**        -Lost and Tired Please join our Community Autism Support Forum Posted from WordPress for Android