Read more about the article What my son asked me tonight broke my heart 
Autism Parenting Woes / Gavin / My thoughts

What my son asked me tonight broke my heart 

There are times when I really hate being me. In order to do what's best for my kids, sometimes I have to cause them pain.  For the very first time in all the many years that Gavin has been receiving IVIG, he made a request of me that absolutely broke my heart. Before Gavin received his IVIG infusion tonight, he said this: Dad, when you put the needles in my belly today, can please make it not hurt...  Do you know how crushing that is to hear? 😢 I would do anything to not have to cause him this pain but it's causing this pain that keeps him alive... 

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September 24, 2016
Read more about the article Gavin’s side effects are getting really bad and it breaks my heart 
Gavin / Medication / Side Effects

Gavin’s side effects are getting really bad and it breaks my heart 

I think I need to stop allowing Gavin to come with me to pick up the boys from school. Unfortunately, his bladder issues have gotten to the point where he really can't ride in a car for more than a couple minutes.  We've been sitting here for 20 minutes and he's almost had three accidents. He's had to run into the school three times already.  The school is a five minute drive from our house and he tried the bathroom before we walked out the door but still also had three accidents on the way.  Right now I'm having him walk up and down the little alley by the school to help him manage this for now. It seems to help but not much.  He wants to be here really…

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September 23, 2016
Read more about the article A massive update on our trip to the immunologist yesterday
Major Update

A massive update on our trip to the immunologist yesterday

After running around all morning and then hanging out with Gavin for a little bit, I figured I'd get everyone caught up on what happened at the boy's appointments yesterday.   The boys were scheduled to see their immunologist/allergist yesterday. She's way up north, quite close to Lake Erie actually.  We followed her when she moved from Akron Children's Hospital because of how complex Gavin is and she was his primary for a couple of his disorders.  Anyway, Gavin was there to have a followup on his immunodeficiency, asthma and allergies. Elliott was there for his asthma and allergies. Emmett was there for his allergies and fever disorder.  I'll start with Gavin because he's the most complex.  Gavin did really well on his tribal volume asthma testing. This means his asthma…

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September 23, 2016
Read more about the article Bloodwork is done for the week
General Update

Bloodwork is done for the week

After taking the boys to school, I went straight to the lab to have Gavin's bloodwork done.  As usual, he did really well and I'm so proud of him.  Today's trip to the lab marks the end of this week's round of bloodwork.  I'm really glad it's over for right now.  I hate that he needs bloodwork every single week but it's a necessary evil anymore.. 🙁

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September 23, 2016
Read more about the article The day has gotten off to a bit of a rougher start
Autism Parenting Woes / My thoughts

The day has gotten off to a bit of a rougher start

Elliott woke up around midnight and was unable to go back to sleep until 4:30am. I'm thinking this was caused by a combination of things but it was partly the result of the fallout from his appointment yesterday.  I camped out in the living room with Elliott, in order to try and help him fall asleep.  That means I'm going on about three hours of sleep and that's only cause we overslept.  Having said that, both Elliott and Emmett were cooperative this morning and we were only slightly late, getting them to school. Unfortunately, I'll have to make a run to the school and deliver lunches because in all the exhaustion from yesterday, I forgot to hit the grocery store.  I can't even begin to tell you how tired I…

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September 23, 2016
Read more about the article In a bit nervous about how Gavin’s bladder issues are going to impact our trip to Cleveland today
My thoughts

In a bit nervous about how Gavin’s bladder issues are going to impact our trip to Cleveland today

I'm not really sure how this trip to Cleveland is going to go. Gavin's bladder issues have ramped up since increasing his Clozapine. The really tough part is that he's not actually having to go to the bathroom most of the time. It's just the overwhelming urge.  He's struggling with this and there really isn't anything we can do provide him with relief.  If I leave early, in order to accommodate frequent bathroom breaks, than we'll be there too early and the boys will have to wait much longer to be done. If I leave at the normal time and we have numerous bathroom breaks along the way, we'll end up being late.  While it's not the end of the world either way, it does stress out the kids and…

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September 22, 2016
Read more about the article I really screwed the pooch on this one but it could have been worse
Asthma / Elliott / Emmett John / Meltdowns

I really screwed the pooch on this one but it could have been worse

This is going to be one of those days where I know going into it that it's gonna suck a big one. This time it's because I screwed up again.  When I had the boys at the immunologist/allergist, earlier this year, follow-up appointments had been made that somehow never made it into the calendar.  I'm very meticulous with managing my calendar and everything syncs with my Google Apps account across all my devices but the ball was dropped somewhere along the way.  Yesterday I received a phone call confirming the boys appointment for today. I didn't even have a clue we were supposed to be there today and that's really frustrating for me.   For whatever reason, the appointments were no longer in my calendar, so I didn't plan for…

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September 22, 2016