Gavin's heart rate and bp are out of whack.  Basically,  his BP is crashing and causing him to nearly pass out. Another doctor came in and explained that the combination of Dysautonomia, frequent urination and vomiting is very dangerous.  What they think is happening is that his dehydrating rapidly and causing his blood volume to drop.  This causes his pressure to crash.  The chest pain may actually be related to low blood volume and reflux. That would explain why he has chest pain even though he's on reflux meds. Gavin's heart is directly behind his sternum instead of off to the side. So when he has actual cardiac pain it could appear like reflux. Right now he's one his first 500cc bolus of fluids right now.  Please continue to keep…

We have left the Geneticist and gone straight to the ER.  Gavin almost fell face first off the exam table. It was suggested that we just take him home and let him sleep but that's not going to happen.  Gavin,  literally can't hold himself up and can barely speak. Everything is slurred and or doesn't make sense. Somethings not right and we want to make sure nothing is serious. We can't keep him awake. This is one of those times that as his parents,  we have to do what we feel is right for our child.  Especially with special needs children,  we know our kids better then someone meeting him for the first time. Now we are just waiting..... **Thanks for reading**        -Lost and Tired Please join…

We're at the geneticist at Akron Children's Hospital and Gavin is not doing well.  He is experiencing a great deal of chest pain and is extremely altered. Somethings wrong. At least we are in the right place for by his right now. While we were waiting,  I almost took him to the ER because he was in so much pain. On the way downstairs,  the pain subsided and we decided that we would return to genetics because of how important this appointment is.  We've been to the cardiologist countless times for the chest pain and they always say there's nothing wrong.  I never know if we are making the right decision at the time but there is no instruction book that comes with special needs kids.  All I can do…

Today is a pretty big day for the Lost and Tired family. We return with Gavin to Akron Children's Hospital, only this time it's to the geneticist. Gavin has already had some genetic work up done in the past.  They were looking for specific things. This time around we are doing the Chromosomal Microarray. This is a much more in depth test.  My understanding is that they will not be looking for something in particular but instead looking for anything they can find. Hopefully,  we will learn something from this process. **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…

With all the negative the Lost and Tired family faces each day, I'm trying to focus on The Lighter Side of #Autism. I don't think this needs any explanation but I will say that weighted blankets can work wonders. **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 have been trying to process all of this new information about Gavin’s health. To be completely honest, I'm a bit overwhelmed at the moment. Thinking about everything Gavin has been officially diagnosed with is breaking my heart and scaring me to death. So far Gavin has been diagnosed with Aspergers, OCD,  ADHD, Bipolar disorder, Schizoaffective disorder, Asthma, PTSD, Primary immunodeficiency, an exotic degenerative neurological disease and now epilepsy. It's a long list of mostly rare and unusual disorders.  This also doesn't include Dysautonomia,  which he is going to the Cleveland Clinic on Friday for. Some of these are very serious and others are simply challenging. Not only do I live in fear of where this journey is going to take us but also what it may take from us.…

I'm laying here in bed,  trying to sleep and there have been several rounds of gunfire. So far I've heard over a dozen shots tonight in the span of only a few minutes. The first was like,  bang.....bang.....bang.....bang. The second was like,  bang.bang.bang.bang.bang.bang.bang.bang. I just called 911 and the cops are on their way to check things out. I also made Lizze turn the lights out and come upstairs because I don't want her to be a random target. This is really sad that it's come down to fearing for our lives,  not to mention scary. I've spoken with my neighbors recently and everyone is scared for their lives. I thinking that moving is going to have to take center stage because we haven't even hit summer yet and already…

In my attempt to see the silver lining in everything,  I wanted to award Today's Victory to both Lizze and Gavin. While Gavin didn't make the best choices while he was there,  it could have been much worse. Regardless of the fact that we received bad news and Gavin puked all over the inside of the van on the way home,  he came home.  In the end,  despite everything else,  he came home. Lizze survived the 48 hours without any of her meds and was able to ensure that Gavin’s needs were met. I know it wasn't always pleasant and certainly wasn't easy but she pulled it off. It's nice to have them home.... That is how I'm choosing to view the events of today. **Thanks for reading**    …