Thanks to the amazing work of Akron Children's Hospital, Gavin's made it through another IVIG infusion, successfully.  Things got a bit dicey a few times but nothing came of it.  He actually fell asleep, which is unheard of for him. Our nurse said that he fell asleep once before but I wasn't there that time. Overall, Gavin tolerated the infusion and increased dosage pretty well.  He is experiencing side effects for the first time is as long as I can remember.  He has a headache and the chills but these are pretty typical for kids on IVIG.  Perhaps it was the increased dose that lead to the return of these side effects but they aren't anything to be concerned about. At one point, Garvin began sweating and the back of…

Gavin is currently being infused with IVIG as I write this.  Today's dosage increase takes us to 25mg and a slightly longer infusion time then previously. Gavin's doing really well and seems to be tolerating things also.  The only problem we've encountered, aside from traffic this morning on the way up, is video games.  Gavin, on a few occasions, got so worked up over the game he was playing, that his heart rate shot up to almost 180/bpm. He began shaking and then his heart rate dropped to 70/bpm. We put the games down and laid very still and relaxed.  Thankfully, he balanced out and nothing happened.  It could have easily gone another direction, as it has before.  Gavin didn't resist taking a break and I think that made a…

For starters, yes, I know vital'd isn't a word but I like it anyway and it fit the title.  :-) The process of getting here today was not without its bumps. For starters, Gavin had fast food for breakfast and that combined with the stop and go traffic on the way to the Hospital is not a good thing.  Lizze suggested using a red light, yellow light and green light for Gavin to convey how he's feeling.  Great idea because Gavin struggles with expressing or articulating things like that normally.  If I ask Gavin how he's feeling, he says green light  if he's feel fine, yellow light  if he's starting to feel sick and red light if he's feeling really bad.  Keeping it simple like this really makes communication much…

In a little while, I'll be taking Gavin to Akron Children's Hospital for his monthly IVIG infusion. This month, his dose is going to be bumped to 25mg (I believe).  It's actually going higher than that but we have to do it slowly over the next couple of infusions due to the strain it will put in his body.  I suspect that today's infusion will also take more time and we will exceed the 4 to 5 hour mark.  It's going to be long day for all involved.  If we can get through this without an autonomic crisis, we will be putting a check mark in the win column for the day. This site is managed via WordPress for Android, courtesy of the @SamsungMobileUS Galaxy Note 2 by @Tmobile. Please…

Emmett wanted chicken nuggets and garlic bread for lunch yesterday. I walked away for a few minutes and when I came back, this is what I found.  I can't remember what he called it but it was something about a garlic bread chicken nugget mansion. He ended up eating the garlic bread but not all of the nuggets. At least he ate something.  :-) This site is managed via WordPress for Android, courtesy of the @SamsungMobileUS Galaxy Note 2 by @Tmobile. Please forgive any typos as autocorrect HATES me. ;-) Check out my #Autism Awareness Store to find really cool and unique #Autism Awareness Clothing and Accessories, designed by me. ;-) For more ways to help the Lost and Tired family, please visit Help the Lost and Tired Family.

Elliott came home from school today baring the gift of fresh artwork to share with Mommy and Daddy.  As we don't have cable TV and haven't for many years, we usually only catch shows after they become streamable on Netflix.  This means that we are typically a bit behind the rest of the world.  Anyway, we have been really into watching Iron Man: Armored  Adventures. This was the inspiration for today's artwork.  I love the way he spells new words phonetically.  I just think that he's absolutely amazing and I enjoy seeing the creative ways in which he expresses himself.  :-) This site is managed via WordPress for Android, courtesy of the @SamsungMobileUS Galaxy Note 2 by @Tmobile. Please forgive any typos as autocorrect HATES me. ;-) Check out my…

Monday, Gavin didn't do to bad at school.  I sounds like he had a great day behaviorally and that's super awesome. The problem revolved around his health related issues again.  Again, it wasn't too, too bad.  Apparently, he feel asleep during Martial Arts (about 45 minutes).  He also dealt with a brief bout of pain.  Overall, it could have been much worse.  Here's to another little victory.  Go Gavin.  :-) This site is managed via WordPress for Android, courtesy of the @SamsungMobileUS Galaxy Note 2 by @Tmobile. Please forgive any typos as autocorrect HATES me. ;-) Check out my #Autism Awareness Store to find really cool and unique #Autism Awareness Clothing and Accessories, designed by me. ;-) For more ways to help the Lost and Tired family, please visit Help…

It's no secret that things aren't going so well for us as of late.  Most recently were began losing our utilities. Tuesday morning our natural has was shut off and we were told that we had to pay the entire balance of over $8,000 in order to turn it back on. To say we were freaking out about this would be a bit of an understatement. However, after the dust settled a bit, I was able to get ahold of Dominion East Ohio Gas.  Turns out, we had been misinformed. The reason we were shut of was because we hadn't been making the PIPP payments.  We were under the impression, after being told so, that we couldn't make PIPP payments until we got caught up.  To get caught up, it…