This morning was stressful AF

We spent all morning listening to Emmett screaming. If he wasn't screaming about one thing, he was screaming about another. It's not the best way to start out the day. I've no idea why he was so out of sorts this morning, but it was awful. He did get off to school with Elliott but when we got to school, he realized he forgot his lunch. After I go for my walk, I'll have to make a return trip to the school to drop off his lunch. At this point, I'm so stressed out and I'm hoping a good walk will be just what the doctor ordered, in more ways than one.

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I’m hopeful this will produce a positive outcome

Beginning today, Gavin will be on a reduced dose of Clozapine. We will be dropping from 600 mg/day, down to 500 mg/day until we return from Gavin's wish being granted by Wishes Can Happen in October. We don't want any medication changes to take place during the trip for a million reasons, one of them being we want Gavin to have fun. There's no way to really predict how Gavin is going to be reacting to this change in medication. We may see an increase of Schizophrenic symptoms, including a return to more dark and concerning behavior. We may also not see a change at all, and that will basically tell us, at the very least, he doesn't need the higher dose. If there's no change, we will continue to…

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How we ended a very stressful day

It's been a really long day and I haven't written much because I'm really tired. It's been an emotional roller-coaster today with all things Gavin. Rather than focus on that, I wanted to share how our day ended instead. After getting the boys to finally go to bed, Lizze and I settled in to watch a movie. I've been dying to see Wonder Woman but I couldn't get Lizze to go see it. It didn't interest her in the slightest, so I didn't push for it. It was released on Google Play yesterday and I've had it pre-ordered for awhile. Lizze begrudgingly agreed to watch it with me last night. She wasn't super excited about watching it but she was doing it for me. ☺ After about fifteen minutes, the…

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The decision has been made

We just got out of Gavin's appointment, and my God it took forever. The two and a half hour wait sucked but I can't really complain because they squeezed us in. This appointment was purposed to discuss Gavin's medication, specifically the Clozapine and it's impact on his health. I'm exhausted after all of this, and I'm going to make this as quick and painless as possible. After discussing the possible options, we opted to go with Lizze's approach because it was the most conservative, and it was also a really good idea. ☺ Basically, we are reasonably sure that the Clozapine is at least one of the contributing factors to Gavin's blood related issues. If fact, it's likely to be the biggest overall factor but there are also other things…

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We may have a very, very difficult decision to make today

In the morning, we have an emergency appointment with Dr. Reynolds, Gavin's psychiatrist. This is an emergency appointment to decide on the future of his Schizophrenia management. This is an enormous decision because it can potentially impact the rest of his life. If we take Gavin off the Clozapine, he will never be able to go back on it again. It's very important to understand that at this point in time, there isn't another antipsychotic that he can safely take. Taking him off the Clozapine could very well mean that we set Gavin up to be an unmedicated Schizophrenic for the rest of his life. While we're mauling that over, there's another side to this coin. If the Clozapine is what's causing the issues with the cell lines in his…

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Gavin just finished a very painful infusion

Poor Gavin had a really rough IVIG infusion this evening. Everything went as it normally does but for some reason it was really painful. Every once in awhile, Gavin's infusion will be incredibly painful. I haven't a clue as to why this is, but it could be related to something as simple as needle placement. Maybe the needles were sitting funny or for some reason, the medication burned as it was going in.. Thankfully it's over with and the pain has subsided but I really hate when any of my kids are in pain. 🙁

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How do I protect my son when it’s his own body hurting him?

I received a call from the pharmacy this afternoon. He was calling to let me know the results of Gavin's lab work from last Friday. The labs came back and it's bad news. Gavin's WBC is at 3.9, down from 4.8 (8.08.2017) and his Absolute Neutrophil is at 2.2, down from 2.8 (8.08.2017). I'm so worried about him that I'm getting sick to my stomach. I've spoken with immunology to make sure they are aware but we are being referred to hematology and oncology. There's a particular doctor we are being referred to at Akron Children's Hospital who's supposed to be one of the best when it comes to blood disorders. I'm currently waiting for an appointment and the appointment is waiting for a referral. All that is being worked…

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Problems with lunch

We had a lunch issue today with Emmett. When Lizze packed his lunch this morning, she packed him cold pizza (the only thing he would eat in his lunch for years), apple sauce, yogurt, jello and a juice. In the way to school, Emmett informed her that he no longer eats cold pizza. I've known about this on and off for a few months but had really been an issue until school started back. Anyway, after walking this morning, I went and bought a couple packages of poptarts. If he'll eat that and the rest of his lunch, he'd be in good shape. The few flavors he will eat weren't available at the time and so I guessed. I dropped off one package of Strawberry flavored and one package of…

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