I’m taking Gavin into the doctors today

Not that I relish the idea of another doctors appointment but I'm taking Gavin into his pediatrician this afternoon.  The issues he's facing with his bladder are such that I want to make sure we rule out any type of infection. It was ruled out a few months back but his symptoms have gotten much worse and so I'm wanting to make sure everything is still okay.  I'll pick up the boys after school and take them to my Mom.. She's gonna hangout with them while I take Gavin.  I'm pretty sure that today's appointment will show that there's no infection but if there's a chance, I want to rule it out. Gavin needs relief ASAP and this is something I can do while waiting to get into the Cleveland…

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#Autism Parenting: Trying to break bad habits is very difficult

I've been talking lately about how Gavin has reverted back to pointing with his middle finger. This is something he used to do when he was younger but we finally moved past it and it's been many years since he's done this.  Since this started up again, I've been trying to snag a picture of him doing this so I can show him what it looks like and why it's a problem.  I finally was fast enough today and while it's a bit blurry, I think you'll see what it is I'm trying to break him of doing. The only reason I even caught this image today is because he was doing this constantly throughout the day.  He doesn't realize he's doing this but the world around him takes notice…

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Gavin’s significant decline is heartbreaking

The boys are sorta having a rougher day. Nothing outwardly horrible but struggle is in the air, especially when it comes to Gavin. This kid is really, really struggling.  I don't know what has triggered this period of decline but he's requiring constant supervision and every last ounce of patience I can squeeze out.  He's also creating more work for me because he seems incapable of following directions right now and so I'm having to follow along behind him and clean up his messes.  This is really annoying but more so, it's sad. Heartbreaking is probably a better choice of words because that's exactly what it feels like. 😦

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Did you know my oldest son doesn’t have a functioning immune system?

Gavin's infusion is underway as is our day. For those who don't already know, Gavin mysteriously lost his immune system a few years back, when all his fragile health issues suddenly began. To counter his lack of a functioning immune system, he receives IVIG twice a week. The process is simple but painful. It involves placing two small needles into his belly area and infusing GAMMAGARD or donated antibodies. This gives Gavin's immune system the soldiers it needs to fight of foreign invaders.  Today is the second of his twice a week infusions.  It's not the best situation in the world but it is working for now and his immune system hasn't gotten any worse in at least a year or two.  Generally speaking, both Gavin and his body handle…

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Here’s what happened at the Cleveland Clinic

I'm going to do my best to explain what happens yesterday at the Cleveland Clinic and I'm going to try and make this shirt and sweet.  For starters, Gavin's okay.  The eye exam part of his appointment showed no issues in structure but functionality would require further testing. That would only take place if the genetic testing comes back positive.    They took detailed picture of his teeth and eyes to further document where he is currently so changes would be easier to track.  Right now we just have to wait for the results of his DNA breakdown.  I should also add that this is all done free of charge because Gavin is now part of the a research project trying to learn more about this extremely rare disorder called…

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God grant me patience because I’m gonna need it today

We finally made it. We arrived at 10:30 am for a 10:00 am appointment. It should take about an hour to get to the Cole Eye Institute and I gave myself an hour and a half to avoid being late but the drive took 2 hours.   Between potty breaks, getting pulled over, road construction, getting off in the wrong exit and more construction, it took an extra hour.  I'm not in a really good place at the moment and my stress level is approaching stroke levels.  Happy thoughts.  I'm going to think happy thoughts and pretend we aren't late and everything went perfectly. That's all I have left to do at the moment.    

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I really need thoughts and prayers today folks

It's going to be a really, really busy day.  The boys will be with my Mom for the day, while Gavin and I make our way to the Cleveland Clinic. This appointment is the first of its kind for Gavin and so I'm really nervous. We will be at The Cole Eye Institute for most of the day. We will be with a genetic counselor for awhile before Gavin undergoes some new tests to help determine the cause of some of his health issues.     What they believe he has is something called Jalili syndrome and of course it goes without saying, that this is extremely rare. Gavin never does anything halfway.  lol/sigh We will likely arrive home just in time for the long overdue family therapy session at Dr.…

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It can be so exhausting to be patient with your special needs child :(

It's heartbreaking but I have to reel in some of Gavin's independence:( Gavin's current capacity is such that I have no choice but to start taking away some of the independence he has earned over the last year.  I've said a few times recently that I'm seeing regression once again.  This is kind of the status quo for Gavin. He will do really well and then begin to regress again. Clearly this is an ongoing issue.  For most of the last year, I've had Gavin responsible for his medications, for the most part anyway. He would take them when it was time and most often remembered to do so on his own.  Last night he informed me that he had not taken his inhaler while at his Mom's house because…

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