Gavin forgot something and it’s worrisome

Gavin had his Friday IVIG infusion this morning. Thankfully, the process went on without any hiccups and he actually did a much better job of putting things together. There has been some concern because he hasn't been able to properly set things up and perform his own infusions lately. Doing a better job today has been a very positive thing and hopefully, that bodes well for the future. We'll have to keep working on this going forward and with any luck, we can continue to build upon today's success. Unfortunately, that's where the good news ends and the worrisome news begins. If you're a seasoned reader, you know that we went through a month of hell recently because Gavin's infusions medication (GAMMAGARD) went into a nationwide shortage and it became impossible…


Our evening was interrupted by rounds of gunfire

We're going into Sunday on an unpleasant note Lizze and I were watching Netflix tonight, trying to relax after another long day of being Autism parents. About halfway through the new movie Extinction, we heard several rounds of gunfire. Unfortunately, the gunfire wasn't coming from our TV, it was coming from outside our window. This is always concerning but lately, Lizze and I have been really struggling with our living situation. We very much need to move and the rounds of gunfire tonight were the most recent reminder. Putting this aside for a minute, it was a pretty decent evening tonight. We took a roughly 2-mile walk before getting some ice cream. The kids did well-ish while we were out and we're quite proud of them. :-) UPDATE: As I'm finishing this post up,…


Ingenious Gifts For #Autistic Kids

This is a contributed post and therefore doesn't necessarily reflect the views and opinions of this blog or its author. Buying gifts for children can be difficult. Thankfully, when it’s your own kids’ birthdays, at least you will have a better idea of the kinds of things they are into and will love to unwrap. When it comes to other people’s children, though, it can be a tougher choice. However, when a child is autistic and you don’t have any experience of living with an autistic individual, you might be completely stuck and may have no clue as to what to buy them. Well, it doesn’t have to be so hard. In fact, I’m sure you’ll be able to find a few different gift guides for children with autism if…


Thank you Wishes Can Happen and the @AkronZoo for an amazing day

I wanted to take a minute and thank Wishes Can Happen and the Akron Zoo for a fantastic day. Wishes Can Happen sponsored today's trip for us and many other previous wish families. We got to visit the local zoo, meet other families who have been touched by Wishes Can Happen and have an amazing lunch. We all had a great time and truly appreciated the experience. For those who may not recall, Wishes Can Happen is a local wish-granting organization. They function on a local level and grant wishes for kids like Gavin, with life-threatening health conditions.  Last year, they granted Gavin's lifetime wish of going to Lego Land in Florida. It was an amazing ten-day vacation and also happened to be the first family vacation we'd ever taken. I personally hadn't been…


Documenting Your Family Life Can Be A Real Adventure

This is a contributed post and therefore may not reflect the views of this blog or its author.  If you learn anything from this blog, it should be how families are absolutely nothing without love, and despite the challenges that might be present in your personal home situation you can always overcome them, or at least manage them. To do this will require a burning love, but thankfully this fire sustains itself from the challenge and connection, rather than fading to cinders. To achieve this will, of course, require your diligent effort. It does not happen accidentally. Pexels There are many methods to help you continually put forth effort and love into your family unit. Presence is one. Communication is another. Understanding and willingness to overcome hardship are perhaps the…


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.


There’s only 1 thing on the agenda for this weekend but it’s causing stress

The boys are headed to the Zoo today with their grandparents. Lizze and I will have at least part of the day to ourselves. We don't really have anything to do or anywhere to go besides the grocery store and that will be a pretty short trip. Regardless of how short that trip will be, I'm hoping to have it done before the boys get home. There isn't anything planned for this weekend but a decent trip to the grocery store could make the weekend just bit easier to survive. I'm already on edge and need to make things as easy as possible. Grocery shopping has become much more challenging since the boys have been home for summer break. We have to buy more than we do during the school…