We are at the Ear,  Nose and Throat doctor (ENT). We are meeting to discuss the next step for Emmett with these chronic fevers likely related to PFAPA.  We are expecting to hear that his tonsils and adenoids need to be removed.  Hopefully it's not going to need to be done but we have already been told it's the next likely step. Fun.. Fun - 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 :)

Today has been a busy day and I'm only half way done. This has been an a-typical day because 2 of our 3 boys needed bloodwork today.  Elliott had a bunch of blood drawn this morning to test for the genetic immunological disorder Gavin was recently diagnosed with......  Also extensive allergy testing will be done as well. This sucked because I had to hold him down.  This took me back to his days in the NICU.  I think it was also the smell of the hand sanitizer.  Ever since he was in the NICU I have associated that very specific smell with the weeks we spent there.  Gavin is having is regular,  weekly,  medication related blood draw as well. He also is having follow up on some worrisome labs dealing…

Elliott had is very first visit to the immunologist today.  One other reasons he was referred there was of the unusual amount of respiratory infections he gets each winter.  There was concern that asthma was involved. So today we had the pulmonary testing done.  Turns out Elliott has asthma and that is the likely explanation for the respiratory infections.  He now has 2 inhalers and a slew of new instructions. The other,  much less pleasant part was the actual allergy testing.  We opted to test via bloodwork instead of the scratch test.  He needed bloodwork anyway,  so this was less traumatic....at least in theory. Elliott was an emotional wreck the whole time we were there and all morning leading up to the appointment. He has really been struggling with change…

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…