I mentioned the other day that Emmett was just beginning another fever flare. He's got mouth sores now and they are beginning to get pretty big. Emmett is obviously miserable and that makes for a very challenging situation.  You can see one of these sores in the picture below.  No one has been able to identify the actual cause of this. Right now it's labeled as PFAPA, which is a rare fever disorder. The fever part has gotten better this year, however, the mouth sores have gotten worse.  If you could please just keep Emmett in your thoughts and prayers over the next 10 days or so, I would really appreciate it. 

I wanted to kind of explain what happened today.  I'm completely exhausted and I don't have a lot of energy. We still have therapy for the boys tonight and so I won't be able to even sit down until around the time the boys will be going to bed. I wanted to take a few minutes and briefly explain what's going on at this point.  The experience was largely positive and the intake was probably among the most comprehensive and thorough I've ever experienced. A very pleasant and soft spoke nurse basically interviewed Lizze for about 2 hours. Essentially, they concurred that Lizze and the program were a match and that basically, she qualified for entrance. It's not quite that simple but you get the point. We learned more details…

Lizze and I arrived and the Cleveland Clinic asked few minutes ago. She's filling out paperwork and I'm be supportive and trying to pass the time.  Lizze and I are really long conversation on the way up here this morning.  We discussed many things, ranging from Elliott,  Gavin and Emmett to this whole thing with pain rehabilitation. Lizze is really nervous about trusting this whole thing.  For that reason,  I have decided to call this new journey we are about to embark on, The Leap of Faith. The reason for that is pretty straight forward.  Lizze is taking good a huge leap of faith by trusting the new doctors and in a process that she is unfamiliar with.  Being off her medications scares her to death, and they plan on…

In a few minutes, we will be on our way back to the @ClevelandClinic for Lizze's intake evaluation.  This is moving along rather quickly and is going  to involve a great deal of change in Lizze's life.  As an aspie herself, change doesn't come easily and she is very, very nervous about this whole thing. My hope is that after today she will feel a bit more at ease with her decision to go through with this.  Today's appointment is supposed to last about 2 hours and is very thorough, from what I understand.  We will also learn more about the program of which there are less than half a dozen of in the entire country.  Hopefully, we'll figure out how we will pull this one off and be able…

I mentioned the other night that we had some more concerning news about Gavin's autonomic issues.  His specialist at the Cleveland Clinic decided that the pros outweighed the constant when it came to adding Ativan to Gavin's daily medication routine.  You may remember that this was discussed briefly before Thanksgiving the doctor that was filling in for Gavin's doctor was not comfortable do this and pulled the plug.  However, Gavin doctor is back and pushing forward anyway with Ativan. I actually picked it up from the pharmacy yesterday.  The pharmacist was uncomfortable with this as well and went on the record as stating just that.  Here's the problem. Gavin's heart rate is still out of control. The Ativan is supposed to help suppress his heart rate and bring it down…

Emmett loves looking at things through other things. Does that make sense? In this picture, Emmett is looking at his best friend through a kaleidoscope. Bella seems a bit confused by this but locked his face anyway.

As you know, we spent yet another day at the Cleveland Clinic this afternoon. Lizze finally got in to see their award winning Headache Clinic. Getting to this moment seems like it took forever and a day but we finally arrived. We we're in the appointment for maybe 15 minutes before the doctor stopped and said,"I think it's best that we just skip to the chase." For the record, it's not usually a good thing when you hear that from a doctor. There are a ton of details but I'm going to cut to the chase as well. Lizze is in bad shape.  Basically, the medications that her local neurologist had her on have completely screwed her body up and we're talking bigtime screwed her body up. She should never…

I got a phone call this morning from the Cleveland Clinic. They we're calling to cancle Lizze's appointment at the headache clinic.  She has been waiting for over 3 months for this appointment. We could reschedule for sometime next year or we could be there at noon today. We went into a stress fill frenzy and scrambled to make arrangements for the boys. Lizze's mom left work and picked up the boys because my parents have the flu staying at their house right now.  We took off for Cleveland like a bat outta hell and are now waiting to be seen.  Needless to so say that this completely throws the entire week off now.  Having said that, Lizze will be seen a few days early. That's a big positive.