My thoughts

July’s IVIG Journey

Both Lizze and I brought Gavin to his IVIG infusion today.  The E's are staying with my parents for the afternoon.  We arrived shortly after noon and got back pretty quick. Gavin's vitals were good and he's down to 123 lbs, which is awesome.  His heart rate is in the 120 rage during intake and while that's high, it's inconsequential for now.  I will say that Gavin's acting a bit strange but not crisis strange.  He's just off. At this point in time, we have finished up all the prep and his is finally receiving his IVIG.  We have a few hours left on this tiny bag of IVIG. This process takes a really, really long time but Gavin's comfortable and playing a Sonic game on the PS2.  I'm hoping…

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July 11, 2013
Read more about the article Local Moms Create ‘Sh*t Moms of Kids with “Issues” Say’ (MUST SEE)
My thoughts

Local Moms Create ‘Sh*t Moms of Kids with “Issues” Say’ (MUST SEE)

I want to preface this by saying that while there is one F-bomb, the video is absolutely brilliant. Watching this, I was nodding my head in understanding the entire time. I can absolutely relate to every single thing these Mom’s are saying. I would encourage you to watch and share this because it really helps to put things into perspective for people that have little or no understanding of what special needs parents daily life is like.

 

 

 

 

 

Local Moms Create ‘Sh*t Moms of Kids with “Issues” Say’ (via BaristaKids)

Two local moms, Martha and Ruth, have created a video called Sh*t Moms of Kids with ‘Issues’ Say, which addresses the life of a parent with a child with special needs. Between the two, they have five children. ”All of them are great kids, in…

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July 11, 2013
Read more about the article I don’t have the luxury of quiting
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I don’t have the luxury of quiting

At this moment, I’m hiding in my bedroom pretending for a few minutes that I have the luxury of quiting. Quiting everything and just running away.. Of course, I don’t have that luxury and even as I sit here, trying to be invisible, it’s clear…

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July 11, 2013
Read more about the article Did you know that Gavin’s immune system is severely compromised?
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Did you know that Gavin’s immune system is severely compromised?

Shortly after noon, Gavin will be in the outpatient infusion lab at Akron Children's Hospital. He will be receiving his IVIG infusion for this month.  This was originally scheduled for Tuesday but life got in the way. I'm not sure who will be taking him. Everything depends on how Lizze is feeling today.  Many times it's easier for her to take him, than sit at home with the two E's. My guess would be that I will be home with the boys today. For those of you wondering what the heck I'm talking about... Let me explain. Essentially, Gavin has no immune system. More accurately, he has a severely compromised immune system.  We discovered this about 2.5 years ago and Gavin has been receiving a donor immune system every month…

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July 11, 2013
My thoughts

I just can’t even imagine…..

I've lost track of how many time Lizze has moved down to the couch, since entering menopause.  These hot flashes are absolutely killing her. It's about 66°F in our house at any given time.  I keep the air cranked up because she's so hot all the time.  We're lying in bed and it's so chilly that I can't get my feet warm.  All of a sudden, Lizze wakes up and has sweat dripping down her face.  I can't even imagine how difficult this is for her or any other woman for that matter. It's frustrating for me because she's not getting any sleep at night, when the hot flashes are at their worst. This means that she's dead to the world during the day. There's never any peace for her…

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July 11, 2013
Read more about the article Elliott’s had an emotionally turbulent day
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Elliott’s had an emotionally turbulent day

Elliott has had a really rough day.  He's been laser focused on collecting all the power stars on Super Mario 64 DS. Last night he collected the 150th power star and I thought, heck yeah Elliott, way to go. Turns out this would be the proverbial straw that broke the camels back. Elliott was convinced that there were 2 more stars and that all the information, from both Nintendo and the rest of the Internet were wrong. There was absolutely no convincing him otherwise. We spent quite a bit of time trying to work through this tonight. He finally went to sleep but I'm telling you it was a rough night, full of emotional roller coaster ride and tears of frustration.  I'm praying that tomorrow is a better day.  This…

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July 11, 2013