Gavin Archives - Page 111 of 113

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.…

20 Comments

August 25, 2015

Gavin / My thoughts / Parenting Frustrations

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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August 23, 2015

Elliott / Gavin / My thoughts

I’m frustrated with Gavin tonight

I'm frustrated with Gavin for a couple of reasons. Elliott informed me that the boys were picking out snacks while they were at their overnight visit. Gavin picked out some hazelnut cookie stick things. Elliott didn't realize that they were Gavin's at the time and asked if he could have one. He was told that they were Gavin's and he would have to ask him. Apparently, when Elliott asked Gavin if he could have one, Gavin told his Grandma that Elliott was allergic to hazelnut and couldn't have one or some thing like that. That was simply not true. Elliott is not allergic to hazelnut and never has been. He's only been allergic to almonds but for awhile, we had to avoid tree nuts all together. That restriction though, has…

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August 22, 2015

Cleveland Clinic / Gavin / Thoughts and Prayers / YouTube Video

Prayers Needed: Gavin may have Jalili Syndrome

The video below will provide more details but if you just want to know what's going on, here's the deal. I received a phone call yesterday from The Cole Eye Institute. This is the premier eye center at The Cleveland Clinic. It was a genetics counselor working with one of Gavin's precious doctors. Gavin's been to The Cole Eye Institute a few times for very detailed exams. These exams were looking for neurological issues that would hopefully give us a direction to go in. He eye exam was fine but they noted issues with his teeth that we already knew about. Gavin is lacking enamel on some of his teeth and has had to have metal caps installed as a result. http://youtu.be/W6OMwtqw99I They took detailed pictures of his teeth as…

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August 22, 2015

Gavin / My thoughts

My son with #Autism has bizarre pain perception

My boys all have their unique challenges but one of the ones that's the difficult for me to personally understand is pain perception. This particular challenges is isolated to Gavin alone and I'm really grateful for that. Well, I'm not grateful he has this issue but instead that it doesn't impact the other boy's as well. Anyways, this particular issue is very much sensory based from what I understand and I don't think there is much that can be done to help him with this.. Here's the problem. Ever since Gavin was little, he would freak out over the most minor of injuries, like a hangnail or paper-cut. More serious injuries like a sprained ankle, serious cut or dislocated joint.. He didn't like any of these but never gets too…

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August 21, 2015

Blood Work / Gavin

Waiting for blood work

We had to get up extra early this morning and head out to get Gavin's biweekly blood work done. This blood work is required before he can get another two weeks worth of his antipsychotic, Clozapine. The process sucks but it's a necessary evil and I understand why it has to be this way. The boys are in the back seat and waiting isn't exactly their strong suit. Emmett is playing the same song over and over and over again on his tablet O_o. Elliott is knee deep in his list of requests for the morning and I can't indulge any of them but that doesn't stop him from relentlessly asking. I'm pretty sure that I'm gonna lose my mind here.

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August 21, 2015

Gavin / Meltdowns / My thoughts

Gavin had his first meltdown in almost a year :(

While at therapy tonight, Gavin was building with this castle set. It wasn't going together easily and he began to get frustrated. I asked him if he was okay and suggested he take a break. Gavin got really upset and started standing on the side of his ankles, if you can picture that. When he does this, it looks like his foot was just snapped off. Anyway, he was starting to hit himself but nothing too serious. I tried to de-escalate the situation but the meltdown engine had already turned over. This is scary for me because I'm beginning to see him slipping more and more. On the positive side and much to Gavin's credit, this wasn't anything super significant. Dr. Pattie and I eventually back out of it and…

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August 20, 2015

Gavin / Today's Victory

Today’s Victory: Putting Others First

This is a bit early for a Today's Victory but I was so impressed that I pulled the trigger and gave the award to Mr. Gavin. We all know how picky Emmett is about everything in his life and if you don't, he's really, really, really, really picky. I'm talking so picky that it's very often, literally impossible to meet his needs, especially when it comes to food. Emmett's in a fever flare and so he's eating a lot of ice cream and Popsicles because his mouth hurts so badly. He's so picky about the color of the Popsicles and the condition they're in. For example, if the Popsicle is bent, cracked or otherwise imperfect, he won't be able to eat it. Gavin asked for a Popsicle this afternoon and…

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August 19, 2015