I wanted to update you all on how Gavin was doing. I want to share how life has been since his latest stint in the psychiatric unit at Akron Children's Hospital.  I also wanted to update you on autonomic issues he was experiencing last night. First things first.  We opted not to go to the hospital last night.  Perhaps that was the wrong decision but Gavin seemed stable and was feeling a bit better.  He went to bed without any further symptoms.  Hopefully,  that will carry over for the rest of the day.  Time will tell.  Thank you for your thoughts and prayers.  They seem to have helped.  :-) Bow has life been since Gavin's return?  That's a bit complicated,  much like Gavin himself. To his credit,  we haven't had…

That title was a mouthful.  I just love Emmett to death.  Sure he can be a little challenging and definitely not easy but nothing worth having ever is. Anyway,  he was soooooo stinkin cute,  I had to grab a few pictures.  He just finished eating his extremely overpriced and outrageously delicious,  chocolate coconut milk ice cream.  I think he liked it.  What do you think? **Thanks for reading**        -Lost and Tired Please join our Autism Help Forum Look for "Autism Help" app at the Google Play Store This was posted via WordPress for Android, courtesy of Samsung's Galaxy S III. Please forgive any typos. I do know how to spell but auto-correct is working against me.

This week is going to be crazy busy.  So far,  we have about a dozen appointments this week. That's not including any pending appointments or ones that will come up at the last minute. We are hoping to see the mitochondrial doctor and are waiting on the call.  We also have to make a return trip to Cleveland as soon as we get the call. It's honestly a bit daunting with just appointments that I know are there and frightening to think about any surprises that may pop up at the last minute. I'm really hoping that Monday is kind to us and for that matter,  all of you as well. **Thanks for reading**        -Lost and Tired Please join our Autism Help Forum Look for "Autism Help"…

I'm so frustrated right now because I don't know what we are supposed to do with Gavin. He's showing the very same signs and symptoms that ended him up in the hospital,  twice in the last 30 days. There are no instructions or standing orders as far as an autonomic crisis,  partly because they are so uncommon. This evening Gavin has presented with blurry vision and chest pain. I have him on a heart rate monitor, so we can have a real time gauge of where it's sitting at.  In the past hour, Gavin resting heart rate has increased to about 107 bpm,  up from about 90 bpm. When he stands up,  his heart rate jumps up about 20 bpm. This is not necessarily a reason to go to the…

I fear that we are in the verge of another autonomic crisis.  We are waiting to get his blood pressure meds refilled and so he's been out for about 3 days. Gavin has complained of blurry vision today already and is now having bouts of chest pain.  In the past,  all these have led to a few days in the hospital. Right now,  he's resting on the couch and watching TV. If his heart rate stays elevated,  we may have to take him in before he crashes. If you could please direct any and all healing thoughts or prayers in his direction,  I would be quite grateful.  I'll keep you posted. **Thanks for reading**        -Lost and Tired Please join our Autism Help Forum Look for "Autism Help"…

Mr.  Emmett John will be making his triumphant return to speech and occupational therapy this week.  You may recall that some idiot at the insurance company decided that Emmett has had 180 days to improve to the level of his typical peers.  Since he hasn't by this point,  we don't expect him to ever. Therefore,  all services will be discontinued. That's not the exact quote,  as I don't have the paperwork in front of me but that's pretty darn close to the exact words. It took me awhile but I went to bat for Emmett and appealed the decision and eventually won.  It however to several months to get all the paperwork to finally go through. The end result is that Emmett will be returning to most of his therapies…

This is a pretty big victory for one Mr.  Emmett John.  He is a very, very picky eater. Today however,  he tried a peanut butter sandwich made on a hamburger bun. He ate the whole friggin thing.  This is climb is such an accomplishment for him because he so rarely tries new foods.  Great job Emmett, Daddy is soooooo proud of you.  I'm glad you liked you sandwich.   :-) Now we just have to focus on the wearing of clothes thing,  but one step at a time ;-) **Thanks for reading**        -Lost and Tired Please join our Autism Help Forum Look for "Autism Help" app at the Google Play Store This was posted via WordPress for Android, courtesy of Samsung's Galaxy S III. Please forgive any typos.…

Earlier this year, Gavin had pictures taken while he was in oncology having his antibody infusion. Actually, it was right after his infusion. These were taken and provided by Flashes of Hope, through Akron Children's Hospital. Lizze was able to convince Gavin to participate and this was the result. These are hands down the most beautiful pictures of Gavin...ever.. Thank you Flashes of Hopeand Akron Children's Hospital for helping to freeze this moment in time. :-)   [flagallery gid=10 name=Gallery]