Thank you for your love and support

I wanted to thank you all for your love and support today.  This has been a really rough day and I'm completely burned out.  Gavin is doing pretty well and is asleep on his room for tonight.  Lizze and I need to have him to the Cleveland Clinic tomorrow afternoon and we are going to have a conversation with the doctor and find out how to proceed from here.  I know that we are making some medication changes while we are there but there are a number of concerns that we need to address, among them are trying to get a prognosis. My goal is to get myself in a better place so I can make the drive and survive the rest of the week.  Thanks again for everything...... This…

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Autonomic Crisis: Stable-ish and home again

After a few hours in the ER at Akron Children's Hospital, Gavin was stable enough to be released.  We opted to reschedule his IVIG infusion so as not to push our luck.  The reason I say Stable-ish in the title is because he's as stable as he's going to be. His heart rate is still too high but it's not the 150-160 bpm that it was this morning.  Stable-ish seems to be the best way to describe where he is right now.  As for what triggered this crisis, it looks like Gavin ate way, way too much for breakfast. Especially before a car ride.  Between that and the drive to Akron, he very rapidly decompensated.  This is why it's so vitally important to watch his intake lime a hawk.  It's…

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Autonomic Crisis: Just in the nick of time

I just arrived to the ER and have gotten settled in and up to speed. My mom picked me and Emmett up and I dropped them off at her house.  On the way, we almost got into a wreck when some dude in a truck came within inches of smashing into us.  Anyway, as I walked I to Gavin ins room, they were struggling to get him to cooperate with his IV and he was freaking out.  I got there in the nick of time to help calm him down and the awesome staff got the IV placed.  Gavin is receiving a bolus of fluids to help stabilize him.  I'm not sure that's going to help though.  It may actually be contraindicated because he's on meds to retain fluids and…

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Gavin crashed and is in the ER @AkronChildrens. Please pray

I spoke too soon with my earlier post.  Gavin crashed while getting prepped in the infusion lab and was rushed down to the ER.  He's is rough shape and I'm making arrangements to get up there and be with him and Lizze.  Ironically, this is the 2nd or 3rd time  that this happened the day before he was to see the autonomic specialist at the Cleveland Clinic.  I'll do my best to get you posted. Thank you for your continued thoughts and prayers, we really need them now. This site is managed via WordPress for Android, courtesy of the @SamsungMobileUS Galaxy Note 2 by @Tmobile. Please forgive any typos as autocorrect HATES me. ;-) Check out my #Autism Awareness Store to find really cool and unique #Autism Awareness Clothing and…

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IVIG Infusion

Gavin is currently getting prepped for his monthly IVIG infusion.  This infusion addressing his severely compromised immune system.  He's currently in the second year of infusions and for the most part, is doing very well with them.  Since the infusions,  he hasn't suffered any major acute illnesses, despite his overall health issues. Hopefully, today's infusion will go well and his body can once again tolerate the infusion. Please keep him your thoughts today.  :-) This site is managed via WordPress for Android, courtesy of the @SamsungMobileUS Galaxy Note 2 by @Tmobile. Please forgive any typos as autocorrect HATES me. ;-) Check out my #Autism Awareness Store to find really cool and unique #Autism Awareness Clothing and Accessories, designed by me. ;-) For more ways to help the Lost and Tired…

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Happy 7th Birthday Elliott

I want to share with everyone that today is Elliott's birthday. He turned 7 this morning and I remember the day he was born, like it was yesterday. Elliott is truly our miracle baby because he almost didn't make it out of the NICU. After a very long and complicated pregnancy, Elliott was born premature and suffered 2 collapsed lungs and a nasty case of pneumonia.  He came very close to dying but fought back.  7 years later, I'm writing this post and wishing him a very Happy Birthday.  :-) I have to say that coming so close to losing a child really gives you a unique perspective  on life.  Seeing Elliott hooked up to everything in the NICU was the scariest thing I have ever experienced in my life. …

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Things I never thought I would say to my kids

Last night, Emmett was carrying around 3 pieces of cold pizza.  While eating one piece with his left hand, he was scratching his crotch with the two other pieces in his right hand.  Without even thinking about what I was saying, I said: "Emmett, stop scratching your crotch wit your pizza." Only afterwards, did I realize the craziness of what I had just said.  :-) Have you ever said anything to your child that you never thought you would ever say? Please share, we could all use a laugh. This site is managed via WordPress for Android, courtesy of the @SamsungMobileUS Galaxy Note 2 by @Tmobile. Please forgive any typos as autocorrect HATES me. ;-) Check out my #Autism Awareness Store to find really cool and unique #Autism Awareness Clothing…

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30 Days of Water: Falling off the wagon

It's been a little while since I updated you in my attempt to give up all other beverages except water.  I did really good for the first week or so but caved in a few times since then.  Sometimes, I just get so stressed out and water isn't very comforting for me.  I had some root beer while we were all Chuck E Cheeses this weekend and I drank some OJ a couple of days ago.  While, I didn't remain as steadfast as I would have liked, I'm still drinking way more water than I was before.  I hardly ever drank water before, it's was always milk or soy milk.  For some time now, 95% of my liquid intake was things like milk, pop or juice.  For the last week…

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