If there was one thing I wish I could make the world understand about special needs parenting, it would be the amount of stress that comes along with it.  Don't get me wrong, there are plenty of amazing things as well. However, the thing that most people just can't seem to wrap their heads around the extreme levels of stress that special needs parents have to function under. I can say beyond a shadow of a doubt that special needs parenting is far and away the most difficult thing I have ever faced.  I used to be a firefighter/paramedic and the stress I faced in that job pales in comparison to what I feel each day of my life as a special needs parent. Please don't mistake this as a…

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…

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…

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…

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…

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. …