I'm so tired that I can't sleep.  Sounds like and oxymoron, right?  I'm living proof that there something to that.  It's very possible to be so tired that you can't sleep,  especially when you can't get your mind to slow down. I have so many thoughts racing around my head that it's like watching cars in a race track when I close my eyes. Writing helps me to relax and center myself.  That would by why I'm posting at 2am. I have a pretty big day tomorrow. Gavin has his next antibody infusion in the morning.  That will easily take half the day.  The past few infusions have been more of a struggle because Gavin is not tolerating the procedure as well as he used to. He physically tolerates it…

Today has been one of those days I would not want to ever repeat. My stress level is absolutely through the roof. When Emmett wouldn't respond to us yesterday,  that was the longest 45 minutes I've experienced in a really long time.  When the episode resolved itself,  and he was back-for lack of a better word-the fear didn't resolve.  When we called the doctor and explained what happened, it sounded seizure related.  That was something I could process. Don't get me wrong,  I would never wish seizures on any of my kids,  ever.  At that moment,  seizures made sense to everyone involved and it explained the otherwise unexplainable. It's not like anyone knew for sure what was happening but it was better to be safe than sorry and with Gavin’s…

We have finally found the neurologists office.  He was at a different location today so we had some extra traveling to do today. Emmett is in a really,  really weird place.  He's having these heavy mood swings and spent the first 20 minutes screaming and crying.  So far as I could tell,  there wasn't anything wrong. Then,  as quickly as it started, it stopped.  On the plus side,  you know, of I have to find one,  the office is really cool looking. **Thanks for reading**        -Lost and Tired Please join our Community Autism Support Forum Posted from WordPress for Android so please forgive any typos as auto-correct and I don't see eye to eye. :-)

If you could please say a prayer for Emmett or just keep him in you thoughts I would really appreciate it. I have been largely absent today because we had a situation with Emmett that sent us rushing off to Akron Children's Hospital. I honestly don't know what happened but it may have been seizure related. This morning I told Emmett that I would take him and Mommy to this new frozen yogurt place called Menchies.  They are a self-serve yogurt bar and they have some dairy free options. This gives Emmett a chance to be a kid for a little while and go out and enjoy some ice cream. We had planned on going after nap time and he was really excited. I woke them up at the predetermined time…

I haven't updated you on Gavin in a few days and so now is a good time to do so.  I'm heartbroken to have to share with you that Gavin is now facing yet another challenge. Gavin will be getting leg braces or maybe ankle braces.  He is walking on the outside of his and sorta rolling his foot from heel to toe. I would think the braces would basically immobilize his foot and ankle, essentially forcing him to walk correctly.  I could be wrong in my interpretation but not think that makes sense. I don't known how well he'll tolerate this.  It could go just fine, or it could be a very unpleasant experience for everyone. We should have more information very soon and when I do, I'll be…

Do you recall how Emmett has been refused speech therapy?  Do you also remember that the reasoning behind was that he hasn't made enough progress and he's not expected to catch up? As if that wasn't bad enough,  they have now denied him occupational therapy as well.  The reasoning is that it isn't medically necessary. The justification for that is based on a numbered scale,  where aparantly Emmett tested a few tenths of a point to high and so he no longer needs therapy.  You'll have to excuse my language but that is fucking bullshit. This is like jump into your waders because the shit is getting deep kind of bullshit. A few tenths of a point? He's not not expected to achieve? Are you fucking kidding me? Clearly they…

Many times I have spoken about Gavin’s inability to self-regulate.  This is pretty much across the board. One of the main concerns is his inability to regulate his own body temperature.  This may be due to a disorder called Dysautonomia,  something we are returning to the Cleveland Clinic for in the next few weeks. Anyway,  I wanted to share an example of what I mean by inability to regulate his body temperature and why it concerns us. In the picture below,  you will see Gavin sleeping.  However,  it's what Gavin is wearing to bed that is concerning.  He is wearing a long sleeve shirt, a T-shirt, and then a sweat shirt. He's also wearing pants and socks. He is sleeping under a sheet and comforter as well.  It was in…