Not that I don't love being around my kids,  cause I do,  but it's been a very looooonnnggggg summer.  Most of our energy is spent on Emmett because he is into absolutely everything.  He can be very aggressive and doesn't always play well with his brothers. School began last Friday and Emmett loves it there and we are actually happy with the classroom and teacher as well.  Everything seemed to be going better then expected until 5 letters crushed our dreams of a daily 2 hour break......PFAPA PFAPA is the likely cause of Emmett's chronic fevers.  Emmett is currently just beginning a flare up.  However,  he now has the other symptoms of cold soars literally covering him mouth and tongue....and....they are contagious.  This will continue to keep him out of…

So I was able to get a picture of just one of the many cold soars Emmett is dealing with right now.  This is actually a smaller one.  I got the pictures so we could gauge the progress and recovery.  We got some medicine tonight to numb up his mouth for a bit. The problem is that it's like mouth wash.  How many 3 year old and rinse,  swish and spit?  They said it's lidocaine,  benadryl and antacid so he can swallow some.  This doesn't seem very well thought out. We just used cuetip to apply it instead. FYI,  for a child with pretty significant sensory issues, it appears that having his mouth number is worse then the pain. I hadn't thought about that. - Lost and Tired Posted by…

Gavin was evaluated this afternoon for PT.  Gavin's feet are pretty bad but over all it could be alot worse. He still can't cross his midline and that's a problem.  However,  the most concern revolves around his feet and ankles.  His ankle is very loose and his arches are collapsing.  He actually walks on the the inside of his arch,  if you can picture that.  The bumps that I brought up last week are most likely bones shifting due to the way he walks and his collapsing arches.  The one thing that really got me was when she was showing me how loose Gavin's ankles are.  There is so much flexibility that when she pulled his foot you could actually see the skin stretching.  It was kinda creepy because it…

We got a call from the immunologist this afternoon.  She is calling in something for Emmett's mouth.  She also wanted to make sure we understood that the mouth soars are very contagious.  Apparently,  that's the only part of PFAPA that is.  That pretty much rules out school at this point until the flare up is gone. We are definitely going to have to meet with the teachers and explain what's going on.  Emmett is miserable and refusing to eat.  I'm going to try different Popsicles if I can tonight and see if that will help. This is really a crappy thing for a kid to go through but even worse for a kid with the sensory issues that Emmett has.  - Lost and Tired Posted by Wordpress for Android via…

Always read the fine print.  We bought Autism Awareness plates for the van last year when we got it. They were more expensive...actually way more expensive but it was for a good cause. What I didn't know was that they were almost 2.5 times more expensive to renew every year.  I just found that out few minutes ago.  Standard tags in Ohio are about $34 however,  my Autism Awareness tags were almost $80 to renew today.  It's the same freakin sticker. I just about had a stroke when she gave me the final price.  I also had to renew my license this year as well,  which I had forgotten about. The moral of the story.....always read the fine print,  even if it's for a good cause.  

Gavin has his PT (physical therapy) evaluation today.  So I took Elliott along for the ride to give Lizze and Emmett some down time. Gavin has been on the waiting list for a very long time and desperately needs PT.  Hopefully,  this will go well and he will finally get the help he needs in this area.  - Lost and Tired Posted by Wordpress for Android via Tegra 2 powered Motorola Photon 4G (provided to me at no charge by Sprint) without the use of proper editing tools and disadvantages of a bastardized version of auto-correct. Please Vote for Lost and Tired (just click the link) and help me spread Autism Awareness. Everyone can Vote once a day :)

We called Emmett of this morning from school.  The soars haven't gone away and he's been up since 4am.  He now has one about half an inch long on the side of his tongue.  After breakfast,  he will get a second dose of prednisone and hopefully gobdown for a nap. He still doesn't have a fever yet but the doctor said it may be a day or two before it shows up. The main reason we are keeping him home is because the Prednisone is not easy on his stomach and it makes him fall asleep. Hopefully,  the second dose will help to quash this flare up. This type of problem is one of the things we face quite often.  I have a feeling that Emmett is going to miss…

Emmett will likely miss school tomorrow.  His mouth is full of soars and I don't think he's going to be in the mood to do anything,  let alone school. This is going to be a problem going forward.  With PFAPA he will likely miss a great deal of school.  He can't go to school with a fever and he usually has a fever at least one week and month.  The doctor said that the fevers are likely to increase it frequency as time goes on.  We'll play school by ear in the morning but I'm really not sure what we should do.  He's not spike his fever yet but it should be any time now as he already has the soars in his mouth. Hopefully,  the Prednisone will work and…