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…

I started a Facebook group called Reality Autism about a year ago. This group has about 50 active members and we are all special needs parents or friends or family of a special needs child. This group is closed to the public view in order to ensure it's a safe place to speak your mind. Many people come here to vent to people who never cast judgement because we have all been there. I'm always amazed at how open and honest our members are with each other. We discuss all kinds of things related to special needs parenting from behavioral issues to unsupportive family. We also share the amazing experiences associated with being a special needs parent. One of the coolest things about this group is that some people come by to learn how…

So I was looking at our calendar after Lizze finished updating it for the week.  We have 12 appointments between now and Thursday of this week. That doesn't include school for Emmett either or anything else thats currently pending. This is one of the more difficult things to balance as special needs parents. There always seems to be a never ending stream of ever increasing appointments. Even though the appointments keep growing the amount ofbtime in the day remains the same. This is going to be a long week,  especially if Emmett is having a PFAPA flare up.  He is going to be a cranky crab,  as he likes to put it,  all week. I'm still in the market for a happy place.  Anyone have any ideas? - Lost and…

Lizze just called from the pediatrician's office.  The doctor said the Emmett's mouth is full of soars and it's only going to get worse.  He agrees that this is PFAPA flare up and the fever will likely show up in the next day or so.  We have to start the Prednisone after dinner and try to head this off before it gets worse.  Hopefully,  this will work and we can quash this flare up ASAP because otherwise,  Emmett is going to be miserable and in alot of pain. If this works then we know for sure this is PFAPA.  If the Prednisone doesn't work then we'll have to proceed down the road the Immunologist was hoping to avoid.  We don't know what that means because she didn't say.  Please say…