Alright, I've got a minute to ask again for your thoughts and prayers.  Gavin isn't doing good at all right now.  We made the trip to Akron Children's Hospital for his monthly IVIG Infusion.  He seemed to do okay in the car but began crashing on the way up to the 5th floor.  He dropped to the floor outside of the yellow elevators and once again while inside.  We made it to the Oncology floor and they immediately took his vitals. His BP crashed and he was very disoriented.  We got him back to his room and into bed, where he is currently resting.  Moving him is the last thing we want to do right now and so we are keeping a very close eye on him. At this point,…

Sometimes I have to really look to find the silver lining.  I really try to focus on at least one positive thing from each and every day.  It's not always easy, especially on the not so good days.  With that said, I want to say that sometimes the only victory is living to fight another day.  That's the case for today. Today started out rough and as I'm writing this, I'm sitting with Emmett, who woke up, had a little meltdown and went back to bed.  I'm trying to help him fall back asleep.  At the end of the day, I have to say that the silver lining is the fact that we all survived.  We're all safe and together.  That's what I'm choosing to celebrate as I sit here…

In the morning, I will be making the trip to Akron  Children's Hospital with Gavin.  This trip will find us in the outpatient infusion lab, where Gavin will receive treatment for his primary immunodeficiency. This treatment comes in the form of an IVIG Infusion. Essentially, they take donated human antibodies and infuse them into Gavin, to bolster his severely compromised immune system. So far, it's kept him from getting seriously sick and with any luck, it will continue to do so. Please keep Gavin in your thoughts and prayers.... This site is managed almost exclusively from my Galaxy S4. Please forgive any typos as autocorrect HATES me. ;-) Follow @Lost_and_Tired "Like" me on Facebook Visit the My Autism Help Forums To reach me via email, please Contact Me   Setup of…

Surprisingly, Elliott was very much in the mood to take pictures today.  He wore his karate gi at school and is ever so excited to have done so.  This is spirit week and the kids were supposed to dress up as something they aspire to be when they grow up.  Elliott chose to be a Martial Artist. When he got to school this morning, Sensei had already laid his gi out.  Elliott changed and then wore it for the rest of the day.  For those wondering, Martial Arts is part of the curriculum at Summit Academy Schools.  I can't say enough about this because it has such a positive impact on these kids. Sensei teaches the kids to push through their obstacles and helps to build self-esteem. They also learn…

Lizze had her appointment with neurology this morning.  I drove her there and waited in the car because she wanted to do this on her own.  She didn't actually see her doctor, but instead saw his PA.  The PA is actually someone I went to medic school with and Lizze has a fantastic relationship with her.  Anyway, Lizze got all her refills and they made a few changes to her meds, most notably her anti-depressants. Lizze has had her migraine for almost 2.5 years now and that was the main topic of conversation. There is basically one procedure that she has yet to agree to and that's Botox. Having said that, her migraine is so bad that she is scheduled for another headache infusion. This is a 3 day long…

This is by far the worst Monday in a long line of bad Monday's. Lizze didn't fall asleep until 4 am this morning and so it was a restless night for me as well.  I'm tired going into the day and to start things off like we did....... To be honest, I'm feeling so demoralized and defeated.  Let me back up a little bit and share what happened.  This is spirit week at school and the boys are allowed to dress up as something they want to be when they grow up.  Elliott wanted to be a martial artist and Gavin just wanted to wear his uniform.  Emmett wants to be a doctor,  so I dug out some of my old medic gear for him to take.  Everything was going…

I wanted to give you an update on Lizze.  Unfortunately, it's not a very positive one.  She's actually written a post about all that she's going through, it's called My Dam has broken. Check out the link above to read her story in her own words. What I'm writing is my perspective. It's what I'm seeing. I think that what Lizze wrote was very insightful and I don't think I can add much to what she said.  However, I can provide insight into the overall impact this has on us as a family. Let me start by saying that Lizze is the strongest person I have ever met. I truly mean that. Every single day she lives through more pain than many others could bare, myself included.  I would imagine…

On Tuesday we will be making the trip to Akron Children's Hospital once again for this month's IVIG Infusion. I will most likely be the one taking him and so I can share the process with you.  I'm anxious to see what the results of his blood work were from last time.  Are his antibody levels stable or are they still decreasing? This is something that I look forward to finding out this week.  With any luck, this treatment will go off without a hitch. Please keep Gavin in your thoughts and prayers this Tuesday. This site is managed almost exclusively from my Galaxy S4. Please forgive any typos as autocorrect HATES me. ;-) Follow @Lost_and_Tired "Like" me on Facebook Visit the My Autism Help Forums To reach me via email,…