IVIG Infusion Archives - Page 165 of 181

Here’s the silver lining to an otherwise very challenging day

Today was full of challenging moments. Some of these moments I rose above and was a good leader for my family. Unfortunately, there were moments where I stumbled and fell. I didn't have the level of patience I typically have and my frustration threshold was pretty low. There were definitely moments that I'm not proud of and most of those were in relation to my lack of patience with the boys, especially Gavin. Gavin is such a good person and he tries harder than anyone I know. At the same time, he's really struggling in many areas of his life. We realized today that he can't remember how to write the letters of the alphabet and struggles writing his own name. When we try to help him, it's not uncommon…

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July 14, 2018

Autism Parenting Confessions / My thoughts

Confessions of an overwhelmed and struggling with life, #Autism Dad

One of the things I try very hard to do with this blog, is be as honest and transparent as I can. There are always things that don't get shared and while I understand the desire to know more, we still need some privacy. This is why there are times when something I say or do seems really out of place and that's because you're probably lacking context that would make things easier to understand. Having said that, it's all about balance. I try to always be positive but not at the expense of the truth. The truth is, sometimes there's a silver lining and if you just take a second, you can find it. Other times the truth is that things just suck and there isn't any amount of…

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July 13, 2018

Common Variable Immunodeficiency / GAMMAGARD / Gavin / Immunology / IVIG Infusion / My thoughts

Gavin’s #IVIG infusion was a very frustrating experience today

So Gavin's medication arrived. We went through the newly received supplies and figured out how to draw up the new solution. Previously, we were using 3, 10cc vials for a total of 30cc's of solution.With the new medication, there are 2 vials total. The first vial contains 10cc's and the second contains 5cc's. That makes for a total of 15cc's and exactly half of the solution he had previously been infusing.The total amount of actual medication remains consist at 3 grams.With that out of the way, the bad news is that Gavin likely won't be able to do these on his own, at least for now.I realize he's a bit out of practice but he made mistakes, the biggest of which wasted about 5cc's of the medication. He wasn't even…

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July 12, 2018

Common Variable Immunodeficiency / GAMMAGARD / Gavin / Immunology / IVIG Infusion / My thoughts

It’s a HUGE day for us and here’s why

After weeks of stress, worry, fear, frustration, anger and exhaustion, we should finally see Gavin's IVIG infusion medication arrive today. We don't have a specific time but it's supposed to be before lunch. I can't totally exhale until they actually arrive because this has been a serialistic nightmare this far. There have been a few times along the way that we were supposed to have had these issues resolved and his medications delivered. I'm absolutely hopeful that by this time tomorrow, we will have out this all behind us.

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July 12, 2018

Akron Children's Hospital / Autism Parenting Insight / Gavin / My thoughts

Here’s how we figured out the legal problems after Gavin turned 18

I was finally able to connect with the person in the legal department at Akron Children's Hospital today, that I needed to speak with. We had a somewhat lengthy conversation about Gavin and how we should proceed with the legal quandary of him turning 18 years old, being legally incompetent and us being unable to complete guardianship at the moment. The current plan is to use a medical power of attorney and when it comes to signing any paperwork, Gavin will sign but so will we. I guess that covers our bases. Everyone understands what's going on and shockingly (I say with total sarcasm), it's a first for everyone. We have to get the papers signed and notorized in the morning. I will deliver them, along with a sworn affidavit…

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July 11, 2018

My thoughts

Life is really getting me down today

I'm feeling incredibly overwhelmed on this fine, sunny morning. There are problems that I'm frustrated with and find myself unable to address on my own. I certainly can't afford to have them professionally solved either. Right now, the biggest is the squirrels living in my attic. I need to evict them and I want to do so in a humane way, but at the end of the day, I need them gone. They are getting in through a hole in the gutterboard on the third floor. When we had our roof replaced about ten years ago, they never replaced the rotted gutterboard and we didn't know because it's concealed behind the gutters. My Dad and brothers are happy to help me pull the gutter down, patch the hole and put…

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July 11, 2018

My thoughts

I’m forgiving myself tonight

We had a pretty decent day. I'm feeling a little burned out. Actually, I'm feeling a lot burned out. I'm having a hard fine writing today because it feels incredibly overwhelming. I'm going to accept that I'm not going to write like I want to today, forgive myself and start over tomorrow. More often than not, I beat myself up for these things because if I don't write, I can't generate revenue to provide for my family. I've learned over time that beating myself up only serves to make things worse for me. Instead, I'm going to try again tomorrow.

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July 11, 2018

Common Variable Immunodeficiency / GAMMAGARD / Gavin / Immunology / IVIG Infusion / My thoughts

The best news we’ve had in a month

I received a call from Akron Children's Home Health, the pharmacy we get Gavin's IVIG infusion medication and supplies from. Everything is set and Gavin should have his new medication on Thursday morning. There was a slight delay because apparently, there were special contracts that needed to be signed in order for them to even carry the new medication. We also have a bit of trial and error ahead of us as well. They are sending out the tubing they believe is correct for Gavin's IVIG infusion. The medication is supposed to be infused over a certain period of time. The pharmacist wants to get things down to about sixty minutes per infusion. If the tubing works as expected, they will send out more. If it doesn't, we will try…

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July 10, 2018