Read more about the article Gavin’s spent 3 hours with needles in his leg
Gavin / IVIG Infusion

Gavin’s spent 3 hours with needles in his leg

Admittedly,  I'm a bit overwhelmed and preoccupied with this whole Childhood Disintegrative Disorder thing.  Some of you have been asking about Gavin IVIG infusion yesterday because I hadn't yet spoken about how the new infusion site went. So here's the deal... Let me start off by saying that Gavin is the bravest kid I've ever met.  The things he endures on a daily basis would be consider intolerable by most adults and yet he never complains about his lot in life.  Yesterday's IVIG infusion was the first attempt at infusing his donor immune system into his thigh, rather than his belly.  In the last 2.5 years of him receiving these at home,  he's had to endure over 520 needles being placed into his stomach area.  That number is low because…

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October 6, 2015
Read more about the article It’s a new day and time to get the boys off to school
My thoughts

It’s a new day and time to get the boys off to school

So it's a brand spanking new day and it's time to get the boys off to school.  Elliott's in rare form this morning and seems to have made it his mission in life to push Emmett's buttons.  I've already had to break up a few altercations between the two of them. That being said,  they have been relatively cooperative and I'm super grateful for that. ☺

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October 6, 2015
Read more about the article Gavin has been officially diagnosed with Childhood Disintegrative Disorder #CDD
Childhood Disintegrative Disorder / Gavin

Gavin has been officially diagnosed with Childhood Disintegrative Disorder #CDD

It's been a really long day and I haven't felt like writing tonight because I'm trying to process everything. I was going to do a Periscope broadcast and I probably will tomorrow at some point because sometimes it's easier to simply speak. I'm going to try to write this but my brain is sorta on overload at the moment,  so please understand that I'll write something more coherent later. Anyway,  I didn’t want to talk much about this until I had spoken to my family first. I spoke to Lizze and most of my family.  I'll try to talk to Lizze's Mom again at some point to explain what's going on as well. I just didn't want people reading about this before I could tell them myself. The image above…

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October 6, 2015
Read more about the article Trying to shake off the bad news and focus on the positive
Focusing on the Positive

Trying to shake off the bad news and focus on the positive

Gavin and I have had a pretty good day.  I'm really trying to shake off the bad news about his diagnosis and focus on some of the more positive aspects of today. After all the chaos from this mornings appointments,  Gavin and I did some grocery shopping and filled our water jugs.  He was a really big help and afterwards, we had lunch. At the moment, we're just sorta chilling out in the car waiting to pick up the boys from school.  It's a beautiful day and while it's a tiny bit chilly,  the sun is shining and I can pretend everything is okay. 😊

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October 5, 2015
Read more about the article Emmett’s having the roughest time sleeping
Emmett John / Sleep Issues

Emmett’s having the roughest time sleeping

For the last month or so, Emmett's really been struggling in the sleep department.  To be more specific,  he's struggling to actually fall asleep.  He's back to where he was right after him Mom left.  Not sure what happened with him but we lost a shit ton of progress in the sleep department in the last month or so.  He won't fall asleep unless he's glued to me.  We worked through this once already,  I'm thinking we can absolutely do it again.  ☺

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October 5, 2015