Common Variable Immunodeficiency Archives - Page 169 of 260

I haven’t written cause I’m not doing so well

It's been a couple days since I've published anything about anything. There are a few reasons for that. The main reason however, is that I'm not doing so well right now. I'm not sleeping and I'm not coping well with anything. I'm overwhelmed by all I have to figure out and there's very little I can do about it. There are bills and major medical worries crushing me. Gavin's still missing medication to replace the GAMMAGARD. They still haven't figured everything out and Monday will mark his second IVIG infusion in a row that he's missed. It's terrifying. The change to his Clozapine hasn't really helped with him sleeping too much during the day. We don't know what to do with that. I'm fighting back but I feel absolutely powerless.…

3 Comments

June 24, 2018

My thoughts

I’m super excited about this

It's not too often that I can pull off an actual surprise. Between the financial hardship and my inability to keep a secret from my family, it's not easy. I've managed to somehow keep a secret from the boys and aside from Lizze, they don't know a thing. In the morning, we're taking the kids to see the new Jurassic World movie as an early surprise for Emmett's birthday on Tuesday. He's been wanting to see this since it was announced.. I'm super excited to surprise him and his brothers in the morning.

2 Comments

June 21, 2018

The #1 most important thing we need to balance as #Autism parents and it’s not what you think

One of the more difficult things an Autism family can deal with is going out in public. This has nothing to do with shame or being embarrassed. It has to do with not expecting more from a child then they are capable of. Kids and adults with Autism can often struggle from things like Sensory Processing Disorder and anxiety. These can make going anywhere, very difficult for them. As parents, we don't want to put our kids through anymore then we have to and so many times, we avoid going places. While that tends to make life easier in some ways, it makes it harder in others. I've said this a million times but when you're an Autism parent, problem solving is often very complicated. It's not easy to find…

0 Comments

June 21, 2018

Gavin / My thoughts

3 extremely important updates you missed

I've been slacking off in the writing department lately and I apologize for that. In order to get everyone caught up on the last couple of days, there are 2 important updates to share. I'll begin with yesterday's emergency appointment with psychiatry. Gavin has been extremely lethargic for the last couple of weeks. We were pretty sure it was tied to his Clozapine (the antipsychotic used to treat his Schizophrenia) but since nothing has changed in over a year, it also didn't make sense. We met with his psychiatrist yesterday afternoon. After they heard what was going on, they got us in right away. Unfortunately, they were also about 2 hours behind and that sucked but on the bright side, we ran into one of Gavin's old friends and his…

1 Comment

June 20, 2018

Autism Parenting Woes / Gavin

When your child has no filter

One of the toughest lessons I've failed to teach Gavin is that you don't need to say out loud, everything that pops into your head. This has been an ongoing struggle for most of his life and no matter how many times I've talked to him about it, nothing ever changes. This isn't necessarily unique to Gavin. I've heard from countless Autism parents over the years, who face the same struggles. I'm not in Gavin's head and while I can somewhat predict what he's going to say, I can't say that I understand why he says it. At best, the thoughts he says outloud are mildly inappropriate and said in the privacy of our home. At worst, the thoughts he says are horribly inappropriate and said in a very public…

2 Comments

June 20, 2018

Gavin / My thoughts

The single biggest reason I’m worried about our emergency psych appointment today

Lizze and I reached out to Gavin's psychiatrist's office because we're growing increasingly worried about his worsening level of lethargy. I mentioned eariler that they were our first stop because if this is medication related, it's probably the Clozapine. Since they manage the Clozapine, it makes sense to begin there. My email was returned within minutes and we got an appointment right away. I'm not sure if that's just convenient or both convenient and scary. It's impossible to get into Gavin's doctor and we literally received an appointment for the same day, scheduled for about an hour after I sent the email. I don't think there's anything medically significant to worry about there is still one reason to be very concerned. We could end up having to either cut back…

5 Comments

June 19, 2018

My thoughts

The #1 reason I’m grateful for days like today

This morning, Gavin had the last IVIG infusion that we have supplies for. Now is when I start to get anxious and stress out because it's become another episode of hurry up and wait. I hate that. His doctor is still working out the details and getting insurance approval. As soon as they know, we'll know. I'm a bit worried about Gavin because aside from his infusion, he's spent most of the day sleeping. He woke up a little bit ago, came downstairs and announced he needed to go back to bed. Lizze and I made him stay up and move around a little bit. We're concerned that he's sleeping way too much. As long as he's okay, we want him to move around a bit see if he can…

1 Comment

June 19, 2018

Common Variable Immunodeficiency / Gavin / Immunology / My thoughts / YouTube Video

What the hell is Common Variable Immunodeficiency?

With all the recent talk surrounding Gavin's immunological issues, I thought I would put something together that would help to educate those among us who may not know what CVID is or what it means to be diagnosed with it. Here's a quick 5-minute rundown or what Common Variable Immunodeficiency is and who it impacts Gavin. https://youtu.be/VvuuWe-8QR4

0 Comments

June 18, 2018