I just want to quit….. an honesty post

i am so overwhelmed right now I feel like I'm going to vomit. I just feel like I am coming apart at the seams and barely holding it together. Today has not been a good day at all. Bad news after bad news just keeps coming our way. I just can't take it anymore. I want to scream and run away. So we heard from one of Emmett's doctors today. We know now that Emmett has severe type 2 allergy to milk. I guess they said the milk binds to his cell membranes or something that's not a good thing. He also has a type 1 allergy to egg as well. Basically he has to go on a vegan diet except he can eat meat.  Milk and egg is in…

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When will Autism stop

Gavin is retreating into his imagination again. I sent him to brush his teeth this morning. He was in there for 20 minutes. I didn't realize at first cause I was getting Elliott ready. We called for Gavin and he was lost in his "imaginary" world. He was talking to his "friends" for the 20 minutes he was in there. He seems to be retreating to these imaginary places more often now. This is usually a sign that a psychotic break. Hopefully not this time but in the past that how it went down. The big concern this time around is that we have NO medication options. Just kill me now because this is not going to be fun and right before Christmas.

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Kids are finally asleep

Kids are asleep. Elliott woke up and came downstairs for a bit to snuggle and fall back asleep. Lizze and I were watching The Mummy and Emmett woke up do we are just going to call it a night. I hope tomorrow is a better day then today was. I hope Gavin has a good day and Elliott continues tovhave good days. I hope Emmett slows down a bit and Lizze doesn't hurt as much.

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We need a break..

Today has just been a bad day. Everyone sees to be on edge. As Christmas gets closer everyone gets more and more anxious. I can't get anyone to listen or follow basic direction. If I had any hair left I would be riping it out. We need a break in the worst way. We need a chance to decompress and unwind. Honestly, we haven't had a night without the kids (with the exception of Lizze having surgery eariler this year) and that really wasn't a break. We were at the hospital by like 5am and the night was a rough one. Lizze and I are at our wits end. There really is no way to discribe all the ways I am exhausted. This week alone we have been to Akron…

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News from the fragile x front….

We just got this letter in the mail a few minutes ago. It's from the Cleveland Clinic. It is the results from Gavin's genetic work up. Apparently, everything has come back normal (as seen in the picture). While it's good news it's also disappointing at the same time. That is because we are back to not knowing what's going on. If this had come back positive at least we would have something to go on. Now we are left with more questions then answers. Does that make sense? It would have also shed some light on his bizarre behaviors. We would have had some more insight into his inner workings. Maybe a better understanding of what makes him tick. Now we are back to square one. At least we can…

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Another day at Akron Childrens

We were at the hospital very early this morning. Emmett was having a Barium study done. Basically he swallows this dye and they X-ray him as I passes through him. He hadn't had anything to eat or drink in like 12 hours so he was an extra special kind of grumpy today, and I don't blame him. Lizze and I didn't eat either so he wasn't hungry alone. We got there and it seemed like every kid was eating something and Emmett was screaming cause he was hungry and didn't understand. Then they put the bracelet on his ankle and he lost it. He screamed and screamed for the 20 minutes we waited to go back. He kept trying to pull it off. I know it's a sensory thing and…

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The “tests” continue in the AM

We will be in Akron bright and early. Emmett has a study being done as part of the gastrointestinal stuff. Starting now he cannot have anything to eat or drink until after the tests are done. Try explaining that to a 2 year old, period, let alone a child on the spectrum that can't communicate. He will not understand and he will be very angry...

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