An update on my wife’s condition(s) (An Honesty Post)

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…

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Why I share my story……

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.…

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Gavin (Crisis) update…..

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.

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Good News and Bad News

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…

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Pins and Needles……..

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.

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One Holiday down and 1 to go…

We made it through Christmas. Gavin had a rough morning but did pretty well most of the day. He struggled at night but in all fairness to him it was a really long day. We get in to see the movement disorder specialist in about a week or so. Hopefully then we can adjust his meds as it is long over due. Families with Autistic children usually dread the holidays and for good reason. Our kids just don't do well this time of year. All we have to do now is make it through the new year and go from there. We have about 6 appointments between Lizze and Emmett this week and so it will be a long week. The van has to go back to the shop again…

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My head is going to explode…..Autism and the Holiday’s….

We are still trying to figure out what we are going to have to do with Gavin. The timing of everything is really bad. Not that any other time would be good, really, just better then this. Part of our strategy is to keep him as stimulation free as possible...  That is key for him to stay afloat. That means making tough decisions, like avoiding gatherings for example. I don't know how to decide these things anymore. I don't want to be making a decision out of frustration and strip him of something he might otherwise enjoy. It's really easy to get caught up in that type of thing when dealing with what we are dealing with.. However the reality is that he will probably not do well. Is it even fair of us…

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