Gavin Archives - Page 18 of 113

Gavin went to bed afraid and that’s not okay

I hope everyone is staying warm. We're having a heck of a time keeping our house warm. It's terribly inefficient and because it's so freaking cold out (-30°F), the furnace is running constantly and the house is barely 64°F. Extra blankets for us tonight. ☺ Anyway, we've had a pretty good day. There were some rough patches but we made it though. I still don't have any answers on the Gavin front because they're still trying to work everything out. I mentioned previously that this is a nightmare because IVIG meds are a specialty medication and insurance has certain requirements. It's just a frustrating, convoluted mess, and at this point, it looks like Gavin will miss his Friday infusion as well. If you're keeping track, that will be two infusions…

2 Comments

January 31, 2019

It’s official, schools closed for 2 days and Gavin’s medication still hasn’t arrived

It's official.. There is no school for the next two days due to insanely cold tempratures. Friday is a bit iffy at this point but we'll know more as the week progresses. The boys are excited but also disappointed because they really enjoy school. With that out of the way, it's also official that we don't yet have a working solution for Gavin's IVIG medication shortage. They (Gavin's immunologist and Akron Children's) are still trying to work out the details of a replacement medication. This takes a bit of time because they have to navigate insurance and that's tricky on a good day. They also want to be very selective with the new medication because we don't want to have to change again. They want to find a medication without…

0 Comments

January 30, 2019

Gavin / IVIG Infusion / My thoughts

How is this even f*cking possible?

While I was driving the kids to school this morning, I received a phone call from Akron Children's Hospital. It was the delivery coordinator for Gavin's IVIG infusion supplies. I could tell by the frustration in his voice that I was going to need a few minutes. I spoke with him before walking the boys into the school and working on the Emmett stuff from the previous post. Turns out Gavin's supplies aren't here because there's another nationwide shortage of his life saving medication. It's literally impossible to get and the only option is to switch him to a new medication for a third time. This is never a good thing because we have no idea if the medication will work for him or if he will have a bad…

2 Comments

January 29, 2019

Gavin / IVIG Infusion / My thoughts

Gavin’s #IVIG infusion supplies never showed up and that worries me

Without going into the backstory again, Gavin is on IVIG twice a week because of his severely compromised immune system. You can read that backstory here. We received a notice from his insurance that they were no longer working with his current, longtime supplier and would be switching to a new company. This is potentially very problematic because this needs to run like a well oiled machine or there can be delays in his deliveries and that could potentially be life threatening. Lizze and I haven't even had a chance to call about this and we're already having a major problem. Gavin supplies were due to arrive last Friday and they never did. They also never arrived today and that means he's missed his infusion. He's missed quite a few…

7 Comments

January 29, 2019

Gavin / My thoughts / Schizophrenia

It’s not easy raising a child with #schizophrenia

Coexisting with a person who has Schizophrenia can be a very difficult, frustrating, painful, heartbreaking and confusing experience. It's even harder when that person is one of your children and there's not much you can do to help them.

3 Comments

January 12, 2019

Autism Parenting Insight / Elliott / Emmett John / Gavin / My thoughts

Today’s #Autism parenting journey in pictures

Today was a mixed bag of really awesome, really frustrating and a bit of whatever fell in between. Overall, we made some amazing memories today. We ended up having to go through some shit to make them but that's all part of the journey, right? Of course it is... I thought I would do things a little different today. Rather than write a 1,000 words, I will share a few pictures from key moments that took place today and briefly explain why they were pivotal moments. ☺ This took place immediately after our guy time this afternoon. We said goodbye to my Dad and brother before heading to Giant Eagle for some desperately nedded groceries. I normally don't take all three boys with me to grocery store because it ends…

1 Comment

December 30, 2018

Gavin / My thoughts

Such is life when parenting a child with fragile health

Most people will never know, let alone fully understand what it's like to have a child with fragile health. Please understand that if you are among the many who don't get it, count your blessing every single day because I wouldn't wish this on anyone. Living in constant fear for your child's life is truly awful. The stress is endless and the heartache is abundant. The guilt for not being able to take away your child's pain or fear is unbearable on a good day and I'll just say that the bad days are really bad. 😔 My oldest son has several life threatening health conditions and they require frequent doctors visits, hospital stays both planned and emergent, as well as special procedures every few days. Thankfully, he's not be…

3 Comments

December 29, 2018

Artwork / Gavin

Guess what we celebrated today

I just wanted to share something we celebrated today. I get that some people might not get the significance of this but it's pretty significant to us. I'll briefly explain why we find this a reason to celebrate. ☺ Once upon a time, Gavin used to really enjoy drawing pictures. I would always take pictures of them to share here on the blog. He used to get a huge kick out of reading everyone's supportive comments and encouraging words. As Gavin's daily struggles began to interfere with more and more of his life, he slowly began to stop drawing or sketching. It's been forever since he sat down and drew a picture of anything. Out of nowhere this morning he asked me for paper because he wanted to draw a…

7 Comments

December 23, 2018