Read more about the article The return of Gavin’s meltdowns
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…

7 Comments
August 13, 2015
Read more about the article Gavin makes his triumphant return to the Cleveland Clinic next week
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…

5 Comments
August 10, 2015
Read more about the article Gavin’s has me more and more concerned
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
Read more about the article The role of medications in my son’s life
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…

4 Comments
August 7, 2015
Read more about the article Gavin got a big surprise today :)
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…

8 Comments
August 6, 2015
Read more about the article My son has had over 416 needles stuck into his belly in the last 2 years and never once complained
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
Read more about the article I’m seeing much more of Gavin’s delayed emotional age lately and it’s concerning
Gavin / IVIG Infusion / My thoughts

I’m seeing much more of Gavin’s delayed emotional age lately and it’s concerning

I've been writing about Gavin's IVIG infusions for many years now. For those who are new to our story, here's the 10 cent tour.  A few years ago, it was accidentally discovered that Gavin had lost majority of his immune systems functionality. There's no explanation or theory that seems to hold water.   As a result, Gavin must receive donor antibodies in the form of IVIG, twice a week via subcutaneous inversion into his belly.  This treatment helps to keep him healthy and gives him an immune system that can fight off the things that would otherwise make him very sick. It's not a perfect solution but it keeps him alive and healthy-ish.     I've also mentioned a few times about Gavin seeming to start regressing once again.  For the…

0 Comments
August 4, 2015
Read more about the article Gavin had a heartbreaking meltdown yesterday
Developmental Delay / Gavin / Meltdowns

Gavin had a heartbreaking meltdown yesterday

I meant to write about this earlier but it somehow slipped my mind.  While we were at Dr. Reynolds office yesterday, Gavin got up to use the bathroom during our time with the nurse practitioner. This isn't unusual because he's frequently using the bathroom throughout the day.  He was gone about 10 minutes when nurse asked if we should be worried about him. I said no, because he frequently spends a few minutes in the bathroom, just making sure he doesn't have to go.     No sooner did I say that, than the nurse was pulled out of the office for an emergency.  I had a very bad feeling come over me and so I followed her.  Turns out Gavin was the emergency. He had gotten locked in the bathroom…

1 Comment
August 4, 2015