As many of you know, getting our spectrum kids into the therapies they need can prove very challenging. Gavin's been on the therapy wait list for a very long time and guess what he's finally going to be receiving.... Gotta read to find out. ☺
Gavin finished his second IVIG infusion into his thigh on Friday. It's now Sunday and he's still having a hard time walking. 😕 He's been on motrin every 8 hours to help with the pain. A couple readers have asked about a port. A port is a semi permanent access point, that provides direct venous access. While I understand why people are asking about it, it's not an option and here's why. Gavin's infusions are subcutaneous, meaning the medicine goes directly into the fatty tissue and is absorbed. A port would be useless for this type of infusion. There are a couple of options I can think of but it's basically just picking the best of the bad ideas but here they are. 1) We could just continue using his…
Gavin's been in a lot of pain since his IVIG infusion in his leg Friday morning. He did find some peace after dinner and you'll love what you see
Just wanted to share that Gavin had the best infusion he's had in awhile. It was painful today but the process itself took only 1 hour and he's been up and moving around since it ended. Recently these infusions have taken anywhere from 3 - 8 hours to complete. Today however, went really, really well. Thanks for the thoughts and prayers... ☺
Please keep Gavin in your thoughts and prayers this morning. He's about to begin his second IVIG infusion at the new infusion site. For the second time, he will have the needles placed into his thighs instead of his belly. While the site is numb, it's a very uncomfortable process and it took about 3 hours on Monday. He had a difficult time walking for about 3 days, following his infusion on Monday. There may have been a little drama involved but he was definitely hurting. He's really nervous and could use some positive energy coming his way... Thanks ☺
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…
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…
My 10 year journey with Gavin comes to a heartbreaking conclusion today