First of all, please let me apologizes for not responding to this sooner. My sole purpose for starting this blog was to very candidly share the struggles my family faces raising 3 kids on the spectrum with my wife being sick as well. You already know these are n fluff pieces and are often difficult to read. They are however the truth. So many familys struggle in silence and become isolated from family and friends. I want our story to help people to realize THEY ARE NOT ALONE. I have received literally hundreds of comments and emails over the past year from all across the world. People are sharing their story with me personally or with everyone via the Lost and Tired blog. It is so important for people to share their story. The world cannot become aware…

So we got back a little while ago...This was a really tough day. Emmett basically was held down to a table on his stomach and given 16 shots at the same time into his back. It was horrible to have to hold him like that. We had to hold him there for 20 minutes and I hated every minute of it. However, I only wanted to do this to him once so we had to make it work the first time.  Fast forward 20 minutes and we get the results. The results of the scratch show that he isn't allergic to anything.....  WTF (pardon my online French), seriously, how is that even possible? The blood work shows he is is allergic to milk,egg and lactose. The scratch tests show he…

I was up very late (3am) with Elliott again. He wasn't feeling very well. This morning no one is feeling well. We thought about rescheduling Emmett's appointment today but we really need to know this information we will gain today..... He kids on the spectrum are sick, it a vastly different experience then when "typical" kids are sick. It's pretty much constant sensory overload until they feel better. Right now they are just all stuffed up but that's enough to cause them great distress.  I have lost track of the days. I think it's Tuesday though. I can't wait to be done with Akron today. I need to go shopping this week and the more information bout Emmett allergies we have the easier that is. Please have a good day…

Lizze is not often a topic of conversation here very often but I am going to change that. I think that what Lizze is experiencing plays a very big role in our lives. So I will be updating more often. Lizze is not doing very well. She is in horrible pain all the time. Literally, all the time. She has migraines just about every single day. Her sleep disorder is getting worse as well. There are times that she will fall asleep right in the middle of doing something. It really makes things more difficult because it completely throws the dynamic off. I know it isn't easy for her either. She feels incredible guilt because she can't do the things she would like to or used to be able to do. I…

This video is a few minutes of a 25 minute meltdown that occurred this afternoon. I don't even remember what caused this one. I do know that these are happening whenever he gets upset anymore. One of the reasons I am willing to show this is because it is important for people to know that this is what families are going through. I don't post these video to make Gavin look bad. Gavin is a great kid and I love him unconditionally. That said, when these meltdowns happen life is literally placed on hold. It's often times like becoming a prisoner in your own home. Everyone, even the family dog is affected. You have to secure the safety of everyone and that is not an easy task. Families like ours need support and understanding.…

Gavin is still spiraling and just keeps getting worse. He is having at least 1 to 2 of these meltdowns a day. That may not seem like much but it is beyond draining both emotionally and physically. The meltdowns had stopped earlier in the summer. When things were at their worst the meltdowns were happening 5 or 6 times a day.  We are slowly working are way back. We see the movement disorder specialist next week. Until we find out what is causing the movement issues he cannot be safely medicated.  Next week can't come fast enough.

Heard back from the Doctor. So far Emmett does not have celiac or any signs of it. That's a huge relief. This doesn't mean he won't develop it at some point but that's in the future (and a bug maybe). The bad news is that he will be enduring 30 mins of needle pricks tomorrow at the allergist. Basically he is placed on his stomach and they prick him in the middle of his back so he cannot reach it. We need to find out what else is making him sick. He will have no idea of what and why that is happening to him. It's going to be really hard to do this but we need to find out what is going on with. Thanks everyone for all the…

I thought the hardest part of this whole biopsy thing Emmett had last week was the actual surgery. However, the waiting for the results is the hardest by far. I called first thing this morning like we were told to. I got a return call a little while later that the Doctor will be personally calling us back later this afternoon. He apparently likes to handle that personally. Now we have to wait until later this afternoon. This waiting is killing me. Please say prayer for Emmett that everything comes back ok. Thanks again for everything.