Gavin Archives - Page 112 of 113

My heart breaks for Gavin tonight :(

Gavin's been through so much in his 15 years on this Earth. If fact, he's been through more in his 15 year than most will in an entire lifetime. Do you know how many times he's complained over the years? Zero, as in not one time. Gavin just takes whatever's dealt him and rolls with it. It's truly amazing.. It's really hard for me to see Gavin suffering and there is nothing I can do to help him. Gavin is one of those kids who just can't catch a break. His emotional and physical health are so complex that no one really knows for sure what to make of it. One of the things we do know for sure is that he doesn't have a functional immune system of…

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August 17, 2015

Gavin / My thoughts

Gavin’s developed a bad habit and I can’t seem to break him of it

Gavin is such a good kid and he's come such a long way over the last year. Lately however, I've been seeing quite a few steps backwards and it's got me a little bit worried. It's really kinda bizarre because as he's slipping, as I have affectionately dubbed it, some old behavioral issues are resurfacing once again. I fear before too long, I'm going to be seeing full fledged meltdowns/tantrums again but that's for another post at another time. For the last few weeks, I've been trying to get Gavin to stop pointing with his middle finger. If you didn't know him, he would honestly appear to be telling you silently, to fuck off. That's not what he's doing but I can think of a million situations this could get him…

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August 17, 2015

Gavin / Meltdowns

The return of Gavin’s meltdowns

Gavin's really starting to struggle once again. Behaviorally he's doing quite well but his level of function is declining and it's not hard to notice. He's not hearing the thing s that are being said to him and his threshold for frustration is extremely low at this point. That means that he get frustrated very easily. As an example of what I mean. Gavin was wiggling back and forth on the couch. This is basically his version of the potty dance. I simply asked him if he needed to use the bathroom and he jumped up and got very upset. He made his body very stir and started bending his fingers back to the point where I'm amazed he didn't snap them off. Then of course, there's the stomping…

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August 13, 2015

Cleveland Clinic / Gavin / Rheumatology

Gavin makes his triumphant return to the Cleveland Clinic next week

Something I'm don't know if I've shared before is that Gavin has connective tissue problems. Apparently, his Mom has a connective tissue disorder but that was diagnosed after she left and so I'm relatively in the dark on that. Gavin is extremely hyper flexible. Some of the things he can do are actually cringe worthy and hard to watch. I've known about that forever and that's one reason why he was in OT/PT and is currently back on the waiting list. The problem he's been having recently is that his shoulders and hips pop out. It's very painful and just sorta happens randomly. He could be running around and be just fine but he could have his shoulder or hip pop out while climbing out of bed in the…

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August 10, 2015

Gavin / General Medical Stuff

Gavin’s has me more and more concerned

I'm getting concerned about Gavin. While he's still doing really well, he's also cognitively slipping. I'm not sure how to really as plain what I mean... Okay, let's try this.. Gavin's current level of functioning is lower than it was 3 months ago. It's still relatively subtle but I'm noticing things throughout the day that are concerning. He's unable to perform more than one or two step tasks at a time. Even with that, he's often either not finishing or simply forgets what he's supposed to be doing. He fell going up the stairs today because he was trying to take 2 or 3 steps at a time, even after I reminded him not to. I seeing a great deal of impulsivity, where he's acting before he thinks. Originally,…

11 Comments

August 9, 2015

Gavin / Medication / My thoughts

The role of medications in my son’s life

It was refill Gavin's weekly pill dispenser time this morning. It's my favorite time of the week <insert sarcasm>. I actually hate doing this because it's a reminder of everything that Gavin struggles with. I've got the actual process down to a science but it's relatively tedious. What you see in the picture below is just one weeks worth of his medication. Majority of the pills are actually for his physical health issues. He's on three psychiatric medications and that's actually progress because it used to be more than that. There are medications to reduce his heart rate and manage his blood pressure. There are medications to reduce the chance of a bad reaction to his biweekly IVIG infusions as well. There are also two inhalers for asthma and…

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August 7, 2015

Gavin / My thoughts

Gavin got a big surprise today :)

For those following my family's story, you already know just how far Gavin's come over the last year. He's made an unbelievable transformation and I quite literally couldn't be any prouder of him. He faces mental health and physical health issue that are exceedingly rare and never once complains. Gavin's gone from a destructive force to one who's efforts help to keep this family running on a daily basis. Anyway, Gavin's been saving up for this Transformers toy. He's patiently saving his money and the other day, I ordered it for him as a surprise from both myself and his younger brothers. This thing was under $10 so it was a huge deal. That being said, I knew it would mean the world to him. It arrived today and…

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August 6, 2015

Gavin / IVIG Infusion / My thoughts

My son has had over 416 needles stuck into his belly in the last 2 years and never once complained

Gavin just finished up his first IVIG infusion of the week. It took about 90 minutes but went though without any issues. Gavin's a lot of things but one of those things is brave. Gavin's a brave kid and has never once complained about any of the hundreds of needles he's had to endure over the last few years. I really think that says a great deal about him as a person. Just since we began doing these infusions at home about two years ago, he's had over 416 needles stuck into his belly. How many of us could so that and not complain? I'm not sure that I could.. For this and a few other reasons, Gavin is one of my personal heroes... 😀

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August 4, 2015