My thoughts Archives - Page 221 of 1480

Ultimate Ferret Playground for Under $50

My kids talk about the Ultimate Ferret Playground we put together for under $50.00. Ferret's make amazing pets and my kids with Autism love them tremendously. We went to Home Depot and picked up 50 feet of corrugated pipe for about $20.00. We spent another $20.00 on various connectors so we could connect sections of various pipe together to form a ferret freeway. The kids change the setup around every day and make it a new experience for our ferrets. https://youtu.be/r-sf1XKlOJE

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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

Akron Children's Hospital / Gastroenterology / Gavin / My thoughts / Surgery

Gavin’s surgery is now uncertain

Gavin's supposed to have an endoscopy and a colonoscopy done at Akron Children's Hospital next week. They consider this surgery and refer to it as such, so I'm doing the same. I received a phone call this morning from his Gastroenterologist. This is the doctor who ordered the non-urgent but medically necessary procedures. As a result of Gavin's recent issues surrounding his IVIG infusions, he now will need medically cleared in order to proceed. They need his immunologist to sign off on the procedures and unfortunately, she won't be back in the office until Monday and we may need to make an appointment for him to get checked out. That may be cutting things a bit close. Assuming that Gavin's IVIG infusion medication shows up this week, he should be…

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July 10, 2018

Day Trips / Family Time / My thoughts

This 1 single decision, turned our entire day around for the better

On multiple levels, it's been an absolutely exhausting day. I found myself dealing with a great deal of frustration all morning. I spent hours on the phone trying to get Gavin's IVIG infusion medication situation resolved and it seems like it's been resolved. See: We finally figured out why Gavin has NOT been able to get his life saving medication and you won’t believe the reason By the time I got through all that stuff, I was heading down a path of anger and I really didn't want to go there. Getting everything resolved was a very good thing but it's been an exhausting, scary and frustrating process. It just all came to a head this morning and I became angry because Gavin had to go through all of this.…

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July 10, 2018