We met with the infectious disease specialist today at Akron Children's Hospital.  He was really cool and Emmett really liked him. Basically,  he's taking a very conservative approach,  and I really like it. Basically,  before we assume anything and while we are waiting for the blood work and chromosomal micro array results to come back,  we stop the Prednisone. He wants is to document his temperature twice a day,  every day at the same time.  We are also supposed to take pictures of Emmett's tongue as well.  Basically,  we are wanting to see what his body's average temperature is throughout the month.  We also need to see what his tongue looks like throughout the month as well.  This will show us if there is a correlation between his body temperature…

Sometimes we have the dogs in their kennels when we step out for a few minutes. It doesn't hold Maggie,  because if someone comes to the front door,  she simply breaks through.  Anyway,  Bella and Maggie are in separate kennels on opposite sides of the room.  When we come home,  a few minutes later,  this is what we find. Keep in mind these are heavy duty steel kennels. Before After **Thanks for reading**        -Lost and Tired Please join our Autism Help Forum Look for "Autism Help" app at the Google Play Store Posted from WordPress for Android so please forgive any typos as auto-correct and I don't see eye to eye. :-)

I think that this is an important question because many of us deal with this every single day. What has your overall experience been with #Autism and your child's education? **Thanks for reading**        -Lost and Tired Please join our Autism Help Forum Look for "Autism Help" app at the Google Play Store Posted from WordPress for Android so please forgive any typos as auto-correct and I don't see eye to eye. :-)

We will be seeing the infectious disease specialist today at Akron Children's Hospital.  The reason for this visit has to do with Emmett's fever disorder.  This disorder and the horrible mouth sores that come will each flare up are out of control and not responding to the medications.  Case in point.  Emmett is on his 3rd fever cycle in the last month.  We have never had back to back to back flare ups,  ever. We typically see about 3 weeks between these cycles. This tells us that something is not right.  The only treatment is Prednisone. However, he can't safely take Prednisone as often as he would need to in order to manage these cycles. Prednisone suppresses the immune system and leaves him susceptible to things like pneumonia,  which he…

This is Elliott's latest little Lego Creation.  I think it's Mario from Super Mario Sunshine. He's obsessed with Super Mario Sunshine.  I think he really likes the Mario that has Flood attached to him. We actually can't find any of those characters,  even on ebay.  So he's made his own. It's really small in the picture but it really is creative.  :-) **Thanks for reading**        -Lost and Tired Please join our Autism Help Forum Look for "Autism Help" app at the Google Play Store Posted from WordPress for Android so please forgive any typos as auto-correct and I don't see eye to eye. :-)

So tonight,  I'm supposed to speak at Stark State College about special needs parenting.  I've never been good a public speaker and it's always kinda awkward for me to meet people in real life that read my blog. Anyway,  barring any unforeseen happening while at Akron Children's Hospital in the morning,  I will be speaking to a class of education major and preschool teachers. I'm hoping they just ask a ton of questions because then I don't have to worry about trying to say or do the right thing. I'm great at fielding questions. :-) In all seriousness,  this is a tremendous honor and if it could help our kids than it's more than worth it.  **Thanks for reading**        -Lost and Tired Please join our Autism Help…

I shared with you last night,  that Emmett is in the throws of his 3rd fever and mouth sore cycle in the last 4 weeks.  This have never happened to us before and we have been told to seek out help from an infectious disease specialist.  I spoke with them this afternoon,  and guess where we will be tomorrow now..  That's right,  Akron Children's Hospital,  once again. Since he's in the middle of an outbreak or flare up, they want to see him right away. So in some weird way,  I guess this flare up is a good thing.  I know Emmett's in a great deal of pain but at least the doctors will be actually be able to see the sores first hand. Hopefully,  that will lead to answers. …

Gavin had his appointment with the neurologist this morning.  I suppose,  the silver lining is that Gavin’s in good spirits.  That's where the good news ends and the scary crap begins. The neurologist is think that Gavin may have Marfan Syndrome. That doesn't have anything to do with anything we were there but it's something we have had in the back of our minds. Marfan syndrome is a genetic,  connective tissue disorder. This is something we have been concerned about for a long time. Gavin’s biological fathers side of the family has a history a aortic tears at a very young age. This is why we have been back and forth to the cardiologist. Gavin has been having chest pain for years but that seems to possible be reflux and…