Read more about the article It’s been a pretty good day
My thoughts

It’s been a pretty good day

We've had a pretty good day thus far. Lizze and the E's did great in their two mile race this morning. They walked with my Mom and sister in law. They were actually among the first walkers to finish, with a time of roughly 45 minutes. The only issue we ran into was the extreme heat. By 9 AM the heat index was already in the mid 90's and I think it took a great deal out of Emmett because had a series of smaller meltdowns in the hour that followed. We had a nice brunch afterwards and celebrated Emmett's birthday with my family. I'm in a good mood but I don't feel very well. Hopefully, I can snap out of it after a pop an Advil. As for the…

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July 4, 2018
Read more about the article It’s going to be a great day
Family Fun / My thoughts

It’s going to be a great day

We're up and at it early today because Lizze, Elliott and Emmett are taking part in the annual July 4th race. They are walking with my Mom, sister and sister-in-law on the two mile course. Everyone's really excited and it should be lots of fun. Gavin and I will be waiting at the finish line with my Dad and grandpa. I'm a bit uncomfortable taking Gavin into a crowd of people, considering his current situation but it is what it is and I'm probably overreacting. Afterwards, we're going to my parents house for a light brunch and to celebrate Emmett's birthday with the family. It should be a good day but it's alps going to be a hot one. A heat warning begins at 9 AM and carries through the…

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July 4, 2018
Read more about the article 4 Ferrets and 50 Feet of Corrugated Pipe
Family Pets / Ferrets / My thoughts / YouTube Video

4 Ferrets and 50 Feet of Corrugated Pipe

I've been getting a ton of requests for more videos of our ferrets. The boys and I spent some time setting up a new playground for our furry friends. We picked up fifty feet of corrugated pipe from Home Depot and sorta turned it into a huge maze of tunnels for the ferrets to play in. They love running through tunnels and have been having a blast with their new playground. Anyway, here's the video I just put up on my channel, explaining what we did and sharing some information about the ferrets themselves. https://youtu.be/V-kVh_wS_wA

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July 4, 2018
Read more about the article There are 14 reasons why I can’t stop worrying right now
Common Variable Immunodeficiency / GAMMAGARD / Gavin / Immunology / My thoughts

There are 14 reasons why I can’t stop worrying right now

I've spent the morning on the phone, trying to get ahold of the pharmacy responsible for delivering Gavin's IVIG infusion supplies. I'm not content waiting to find out when his medication will arrive. This is too important to let happen on its own time frame. After a few attempts, I finally got to speak with a person at the pharmacy a little bit ago. As usual, they were very nice and seemed to be equally frustrated that we don't have Gavin's medications yet. This person went over what was going on and it's safe to say that anything that could possibly go wrong, has and continues to go wrong. Let's just review what's happened so far. There is what appears to be a manufactured (purposeful} nationwide shortage of GAMMAGARD. Immunology…

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July 3, 2018
Read more about the article This is life threatening and he needs his treatment
Common Variable Immunodeficiency / GAMMAGARD / Gavin / Immunology / My thoughts

This is life threatening and he needs his treatment

It's now Tuesday, July 3rd and it's been three weeks since we first learned about the nationwide shortage of GAMMAGARD. Gavin recieves at home IVIG every Monday and Friday for treatment of Common Variable Immunodeficiency (CVID). His immune system is severely compromised and this medicine gives him a temporary immune system. It's not permanent and it burns off rather quickly. These infusions are done twice a week in order to keep his levels up and his body fighting off illness or disease. Gavin has now missed four infusions in a row and while we're told not to panic, I can't help but feel this overwhelming sense of urgency to get this resolved. We're currently waiting on his new medication to be dispensed. Everything has been approved and the medical supply…

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July 3, 2018
Read more about the article The heartbreaking talk I had with my youngest
Autism Parenting Heartbreak / Emmett John / Gavin / My thoughts

The heartbreaking talk I had with my youngest

I always try to live my life without making any assumptions, at least big ones. No matter how hard I try, I inevitably find that I've made assumptions without even realizing it. I ran into one such time over the weekend. On one of our many trips to Home Depot, while trying to fix our kitchen sink, a subject came up and resulted in a heartbreaking conversation with Emmett. I'm not sure what we were talking about but I stopped off at a gas station because we needed gas. I asked Emmett if he wanted to learn to pump gas. Always eager to learn new things, he jumped at the opportunity. I closely monitored him but he did really well and we were soon on our way to pick up…

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July 2, 2018
Read more about the article All I wanted to do was fix the sink and this happened
Emmett John / My Projects / My thoughts

All I wanted to do was fix the sink and this happened

It's been a really long and frustrating day. We were disappointed that we had to postpone our hike due to high temperatures but it is what it is. Instead, Emmett and I took on what was supposed to be a simple project and it turned out to be anything but. I'll try and sum it up a quickly as I can because I'm exhausted and hoping to actually fall asleep tonight. We had to remove an old, broken garbage disposal and convert the sink about to a standard drain. That was a relatively simple task aside from nothing coming apart the way it was supposed to because whoever installed it, screwed all the connections together and decided that wasn't enough. They opted to then cover everything with what appears to…

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July 2, 2018