We heard back from the wonderful Doctors at the Cleveland Clinic.  They do not want him to make the trip to Cleveland unless Akron Children's Hospital transfers him directly.  They want him to be seen immediately at Akron Children's Hospital.  Emmett is going to Lizze's parents in a few minutes and then we will leave. It's important to note that while his heart rate is elevated,  he is otherwise a-symptomatic, meaning he has no other outward symptoms.  However,  the concern is that his body is obviously trying to compensate for something,  hence the 130 bpm.  Kids tend to compensate quite well but than go down hill very rapidly.  This is what we are seeking to avoid or at least be in the right place when it happens. Gavin's tantrum this…

The other shoe is beginning to drop and we can see it coming.  It's like one of those dreams where you're trying to run away but you're stuck in place and can't get away. I just got off the phone with Gavin’s immunologist are Akron Children's Hospital.  She called because Gavin's labs are a bit off.  His white cell count is okay,  which is good.  However,  his hemoglobin levels are low.  She said that they aren't to bad but it was enough to warrant a call. She wanted to know how he's been doing.  I explained that his heart rate has been pretty high for the last few days. Right now his resting heart rate is about 130 bpm.  This has her concerned and she said is early signs of…

I wanted to take a few minutes and update all of you on the current status of Operation Hope. I was able to speak with someone from Stark County Family Council/Wraparound this morning.  I spoke with a very pleasant and compassionate woman who did an intake.  The ball is now officially rolling.  We have records to collect and paperwork to fill out,  but this process is moving much faster and smoother,  at least so far,  than I could have hoped for. Basically,  once I have the paperwork turned in,  we will meet with the committee who makes the decisions about funding.  We will have a conversation, and you all know,  I'm all about dialog.  I'm so grateful to have a chance to speak with them about helping Gavin and the…

Gavin just had a huge tantrum because we corrected him for saying something to Emmett that was not nice.  As a result, he lost his TV. This was pretty consistent with the other tantrums, however, the level of violence and self-injury has escalated. Thankfully,  his rage was only directed at himself and the objects in his immediate area. This time around for whatever reason,  he decided to include punching himself in the crotch, repeatedly.  If he wasn't doing this on purpose,  I would feel much worse about this than I already do.  He punched himself in the crotch,  screamed in pain and then did it again and again. He scratched up his face and legs again but nothing serious. I'm debating about whether or not to take him to Akron…

Emmett is currently on a Spiderman kick. We took him to see the Amazing Spiderman a few weeks ago. He was a fan before but now he's a much bigger fan. :-) He has been emulating Spiderman this weekend and I'll be dammed if it isn't the cutest thing ever. I love the fact that he's doing this.  It just shows how much progress he's made.  I don't care if he wants to wear that shirt everywhere because I'm so proud of him.  I hope this makes you smile.  :-) 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 hate me. Please join our Autism Help Forums Look for "Autism Help" app at the…

I touched on this a little bit yesterday.  I think that, in general,  special needs parents, myself included, carry around a great deal of guilt. More often than not,  the guilt is not warranted.  That doesn't make it any easier to cope with though. I carry around so much guilt for things that I know I had no control over.  Rationally,  I understand that but it doesn't make the guilt go away. I'll give you an example.  I hear all the time from people how I'm doing such an amazing job and what a wonderful father I am.  However,  the truth is that I don't see that.  I tend to focus more on what I do wrong instead of what I do right. I compare my short comings to other…

As you know,  Elliott is in the Hamptons, visiting my little sister.  Although,  I guess she's not that little anymore,  she's Dr.  Kate Gorski. Anyway, today Elliott, my parents, Kate and my Grandmother went whale watching.  Although they didn't see any whales,  Elliott had the time of his life. You can see it in his eyes.  I just wish I was there to see them firsthand.  :-( He told my parents that this "was the best trip ever".  :-) I'm so happy for him because he needs this to hopefully unwind and finally relax.  His poor little body is so full of anxiety all the time. Between Gavin’s psychological warfare and Emmett’s bullying,  Elliott is being asked to cope with things, no 6 year old should ever have to. He…

Tuesday is a huge day for the Lost and Tired family.  Gavin returns to the Cleveland Clinic and Elliott returns home from the Hamptons. Gavin is scheduled for minor surgery at 10 am Tuesday morning.  This procedure involves taking various skin biopsies from various parts of his body and using them to tailor a very specific genetic test. They will also be looking for neurofibrosis,  if I recall correctly. The procedure lasts about 20 minutes and they made special arrangements to do it Tuesday.  The doctor that does this doesn't normally do this procedure on Tuesdays. After that we will have about 5 hours to kill before his next appointment. The second appointment will be with the autonomic specialist.  This is crucial because he will play a huge role in…