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…

First of all, let me say that I know it could be much worse.  However,  as this day just keeps going on and on,  I able to cope with less and less.  A little while ago,  Emmett,  who was supposed to be going potty,  decided that a change of plans was needed.  Emmett found a can of Lizze's shaving cream,  some hand sanitizer and tooth paste.  He took all those ingredients and mixed them and subsequently applied the plaster like paste into his hair.  This is the part that I know could have been worse and thankfully we don't have to deal with other, far less pleasant things being put into my child's hair.  My heart goes out to all of you that are struggling with that. :-( I think…

I'm really starting to hate today.  I have a post I'm working on that will explain that.  However,  Emmett is really struggling right now. I just caught myself saying to Emmett,  "Emmett,  we don't stab your brother in the head with a fork." Really?  That's how my day is going.  **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 really like this question because I think it's a really cool thing to think about.  When I thought about my own answers, it put a smile on my face.  Hopefully,  you will have the same experience.  What puts a smile on your child's face? **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. :-)