Gavin Archives - Page 54 of 113

Not knowing is killing me

It's been the longest day ever. I've been waiting for the phone call to deliver the news about Gavin's lab results but that call never came. Unfortunately, this isn't one of those no news is good kinda things. This is one of those the lab didn't fax the results or the doctor just didn't call kinda things. We'll know this afternoon for sure but the wait is killing me. I need to know what's going on with Gavin and not knowing is killing me.

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October 26, 2017

Clozapine Crisis / Gavin / My thoughts

I age 5 years everytime this happens

I'm waiting to hear back from the doctor in regards to Gavin's lab results. The only way I can explain how excruciating this wait is for would be to relate it to a young child on Christmas Eve. Maybe that's a bad example. It's not the excitement but rather the extreme anxiety of knowing it's coming but having to wait. I swear to God I age five years each time something like this happens. 🙁 I'm trying to remain positive because it could very well be temporary good news. I just have this sick feeling in the pit of my stomach and I can't seem to shake it.

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October 25, 2017

Gavin / My thoughts

I’m worried about Gavin and scared to get the results

One of the things I hate most in life is waiting. We all have to wait for things but waiting for medical test results, especially when it's serious and in regards to your child. I've said this a million times over the years but all we can do now is hurry up and wait. Gavin's labs should be done this afternoon and we'll likely hear from the doctor mid-afternoon. All I want to hear is that his numbers are climbing back up and everything is going to be okay. Unfortunately, even if that's the case, we still don't know why this keeps happening. I'm exhausted, stressed out, worried beyond belief and overwhelmed by everything. It's truly awful when all you can do is hurry up wait.

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October 25, 2017

Clozapine Crisis / Gavin / My thoughts

I’ve got heartbreaking news

I received a phone call this morning from Dr. Reynolds office. I assumed they were calling to move our appointment again but I was wrong. Apparently, Gavin's labs from yesterday came in and his numbers are dropping again. Right before we left for Florida, he had labs drawn. His Absolute Neutrophil was 3 and his White Cell count was 5 at the time. Unfortunately, his labs from yesterday show a sharp drop. His Absolute Neutrophil is 2 and his White Cell count is 3. This means one of four things: The Clozapine has nothing to do with this. The Clozapine is causing this and he's going to have to completely detoxed from it to know for sure. The Clozapine may had caused permanent damage. This is part of CVID and…

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October 24, 2017

Autism Parenting Struggles / Gavin / Meltdowns / My thoughts

Gavin had a massive meltdown and it sucked

Lizze and I have been keeping a close eye on Gavin. We always keep a close eye on Gavin but more so now because of his medication changes. Gavin had another meltdown yesterday evening over something that wasn't a big deal, at least not to us. Gavin is always asking for ways he can help and typically won't stop until we give him something to do. If we don't, he gets this sad expression on his face and will repeatedly return, asking the same question. Some of the things Gavin has been doing are the laundry (putting into the washer and switching to the dryer), dishes, managing the recycling and helping with the pets. All these things are important life skills he needs to know anyway, and the more practice…

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October 24, 2017

Elliott / Gavin / General Update / My thoughts

No sleep for this #Autism Dad and other updates

Last night was rough. Elliott never fell asleep and is going on something like 36 hours right now. Thankfully, Lizze took Emmett to school and then took Gavin for his bloodwork. That being said, we had some major problems with Emmett this morning. I was able to go back to bed a bit later this morning and feel fully recharged. Elliott is still plugging along as though nothing is wrong, other than running a fever. I don't know what's going on with him but I wish I did. As for Gavin, he's doing pretty good today. We have to do his IVIG infusion this afternoon but that's not a huge deal. Aside from talking endlessly about his one tablet game, he's not complaining of any problems and hasn't talked about…

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October 23, 2017

Gavin / My thoughts

Hopefully today will be a good day for Gavin

The boys had a pretty decent day. They spent some time playing in our family Minecraft Realm. I can play on the Xbox while they join in from their tablets. It's a lot of fun and we can all work together. We didn't go anywhere because Lizze wasn't feeling well and the boys wanted to stick close to home. I think we're going to go Pokémon hunting tomorrow though. It'll get everyone some exercise and the boys will have some fun. I'm hoping Gavin will be going okay, so he can enjoy himself if we make it to the park. Gavin had a decent day today but clearly struggled. With any luck, Sunday will be a good day. ☺

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October 21, 2017

Gavin / IVIG Infusion / My thoughts

Good job Gavin

I'm looking at this as a blessing but it's also kinda interesting at the same time. With all the challenges Gavin faces on a daily basis, including memory loss, cognitive decline and a bunch more, he's still doing well in some areas. This morning Gavin had his IVIG infusion and was able to put it all together, without any noticeable problems. It's not really that complex but the fact that he was still able to put all the pieces together, and draw up his medication, is a good thing. I find this interesting because there are very simple things that Gavin is unable to do anymore. Putting his IVIG infusion together is more challenging and he can still do it. Good job Gavin.... ☺

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October 21, 2017