Read more about the article As if life wasn’t already hard enough, it seems the voices are back
Clozapine / Gavin / My thoughts / Schizophrenia

As if life wasn’t already hard enough, it seems the voices are back

Last night, Gavin came downstairs after being in bed for a couple of hours, mumbling something about a glass of water and claiming to be wheezing. He was heavily sedated and that's not necessarily normal for him. With no changes having been made to his meds, there shouldn't be any change to the way they impact him. This morning, I mentioned to Lizze that something wasn't right last night and I wonder if he's taking his medication, specifically his Clozapine, correctly. We were prepared to write if off as a one off event and move on. Right about that time, Gavin came downstairs and I asked him about last night. As I suspected, he didn't really remember what happened. I then took the opportunity to ask him about whether or…

2 Comments
May 12, 2018
Read more about the article The plan for today
My thoughts

The plan for today

The plan for today is to work on the house for a little while before going to the park and enjoying the weather. Maybe we'll go for hike in the woods. We haven't done that is a while. The only problem with that Is that Emmett only wears crocs and those aren't conducive for hiking. We'll have to stop every 30 seconds for Emmett to fix them. I heard a rumor that the boys might be spending the night with their Grandparents but I'm not sure if that's actually happening or not. The only other two things on the agenda today is to get the water jugs filled and watch the Cavs destroy the Raptors in game 3..☺  

1 Comment
May 5, 2018
Read more about the article There is no cure for what my oldest son has but we keep pushing forward
Common Variable Immunodeficiency / Gavin / Immunology / IVIG Infusion / My thoughts

There is no cure for what my oldest son has but we keep pushing forward

Eariler today there was a knock at the door. It was Akron Children's Hospital delivering Gavin's IVIG infusion supplies. I guess I didn't realize it was already that time of month again. Gavin has been getting these delivers for more years that I care to remember and as much as I hate the fact that they're necessary, they are. These supplies allow for his twice a weeky IVIG infusions. Without these infusions, Gavin wouldn't have a functional immune system. It's a heartbreaking reality that people like Gavin and families like ours have to live with. There's no cure for Common Variable Immunodeficiency and while the treatment is available, it's also incredibly expensive. Over time, it's likely that Gavin's condition will continue to worsen and he will need higher and higher…

0 Comments
April 20, 2018
Read more about the article He’s 18 years old on the outside but not on the inside
Gavin / Inspirational Posts / My thoughts

He’s 18 years old on the outside but not on the inside

Gavin's having a rough time today. He's eighteen years old now but can't be treated or managed like a typical, freshly minted adult. Unfortunately, Gavin's cognitive ability is significantly lower than his chronological age. Until we have his new NeuroPsych testing done this summer, we won't know exactly how much he's regressed since the last time he was tested, but his doctors have pinned his emotional age at around eight or nine years of age. That's a ten year difference between his developmental age and his chronological age. As he gets older, it becomes more and more obvious that he is struggling. Today he was taking out the recycling (supervised of course) and his lack of ability to problem solve was on full display. We have recycling collected in a…

1 Comment
February 19, 2018
Read more about the article Do you ever feel like life has just kicked your ass?
My thoughts

Do you ever feel like life has just kicked your ass?

It's been a long weekend and it's still not over yet cause there's no school today. There's not been anything catastrophic that's happened in the last few days but I feel like I had my ass kicked up one side of the road and down the other. Truthfully, Lizze and I are both on edge but there isn't one single thing that's responsible for our stress. It's a combination of things and it creates tension between us that we don't even realize is there until we have a disagreement. It's nothing major or even worth mentioning other than to illustrate how stress impacts us both. I know Gavin is wearing on me but so is everyday life. I'm absolutely exhausted, overwhelmed and truly feeling like life is kicking my ass.…

0 Comments
February 19, 2018
Read more about the article There’s way too much shit to worry about as a special needs parent
Clozapine / Gavin / Medication Management / My thoughts

There’s way too much shit to worry about as a special needs parent

I've been playing a very frustrating game of phone tag with the pharmacy this afternoon. I need to make sure they either look out for a fax from the lab or call and have it faxed over because Gavin needs his refill tomorrow. I cannot stress enough that Clozapine is the most tightly controlled medication in the United States for a reason. You do not fuck with this medication and it has to be taken seriously. The fucking stress that we experience simply because of this goddamn medication is inexplicable. I also reached out to his doctor and asked that they immediately email with the results of his his labs because I'd like to sleep tonight. They do that anyway but I feel better reminding them. They know how serious…

8 Comments
February 15, 2018
Read more about the article Gavin went to bed not feeling well and I’m worried
Gavin / My thoughts

Gavin went to bed not feeling well and I’m worried

Gavin had a really stressful day yesterday. He did great with having to get more bloodwork done but it took a lot out of him. As the day went on, it was clear that he was at the end of his rope. The boys were being annoying, as little brothers will be, but Gavin didn't have as much patience as he usually does. After dinner, he ended up with really bad reflux and it took quite a bit of work to help him feel better. He went to bed tonight still not feeling 100%. I don't know if the reflux was stress related or if it was something he ate. Maybe it's a little bit of both or something else all together. I'm worried about him and there's nothing I…

2 Comments
February 9, 2018