Gavin / General Update

Important Update: Gavin’s Urologist Called Today

We had some things go very right today and we had some things present us with challenges. I feel like overall the day was a success, and not just because we physically survived. (see Thank God for mornings like this and read all about it)  The main topic of this entry is centered around the phone call I received from Gavin's Urologist's office at the Cleveland Clinic.  They were following up on Gavin's emergency room visit yesterday. I think that's a cool thing to have a doctor's office follow up like that without being prompted. It shows they care and that's why we love the Cleveland Clinic.  I spoke with a nurse who wanted to know all that happened and everything the ER doctors did while we were there. We spoke for…

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December 14, 2016
Read more about the article UPDATE: Gavin was in the hospital today and here’s what happened 
Gavin / General Update / My thoughts

UPDATE: Gavin was in the hospital today and here’s what happened 

Update: I was so frazzled when writing this that I forgot to thank all of you for all the love, support, thoughts and prayers that were sent our way today.  It actually means a great deal to us.  ☺  There are times I wish I could just speak to my readers directly because it would so much easier to talk than write.  Sometimes I struggle with putting words to my emotions and frankly, that is why I don't write more than I do anymore. I'm overwhelmed and lacking the energy to say all I need to say. Please bare with me as I try to explain what happened with Gavin today and do so in a way that makes sense.  It's best I start at the beginning.   I woke…

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December 13, 2016
Gavin / Thoughts and Prayers

Gavin’s in the emergency room please keep him in your prayers 

We're waiting to go back, but I wanted to take a minute and ask that you keep Gavin in your thoughts and prayers.   Currently were at the emergency room because Gavin has been experiencing something going today that could end up being very serious, especially with a compromised immune system.   Essentially, Gavin's been peeing blood today, and we aren't sure why. Gavin's story has been shifting today, and so we aren't entirely sure what's going on.  At first, we thought he was popping blood and so we called his doctors to find out what to do. Then later on in the morning, Gavin informed us that he hadn't pooped today at all and that he was peeing blood.  He didn't think it was important enough to tell us…

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December 13, 2016
Gavin / My thoughts

Applying for Make-A-Wish is breaking my heart

I'm feeling a great deal of mixed emotions tonight as I write this entry. Lizze and I finally sat down today and began the application process to have Gavin get a wish granted by the Make-A-Wish Foundation.  One of Gavin's specialists have been encouraging me to do this but I hadn't until today.  During the separation, things were really hard and I was struggling to keep the boys above water. When Lizze moved back home, we began putting our lives back together and I still hadn't applied.  The truth is that I was struggling with the idea of this whole thing because for Gavin to qualify, it means that things are pretty bad for him. It forces me to face his mortality and that's something I really struggle with.  Below…

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December 1, 2016
Gavin / General Medical Stuff / My thoughts

An important Gavin update 

​There are too many thing to talk about with Gavin anymore, but I will briefly touch on how he's doing overall.  Gavin's such a good kid. He tries so hard at everything in life and unfortunately, he's struggling. We're seeing more and more regression lately. Things like memory (especially short term), simple tasks and even walking have become more challenging for him.  He's very easily confused and that frustrates him a great deal.   On the positive side, his actual behavior is still a shining example for his little brothers. He caring, kind and gentle. He worries about everyone and always wants to help. Honestly, Lizze and I couldn't be prouder.  ☺  Everything else is par for the course when it comes to the things that make up Gavin. They're…

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November 30, 2016
Gavin / My thoughts

How my son is driving me crazy

I'm going to be very honest. Gavin is driving me absolutely crazy today. It's not his fault but his behaviors are just getting under my skin today. There're a couple of newer things that seem to be problematic for him and they do seem to be of a more frustrating nature for me personally. Of course, we have the typical incessant talking, bragging about his superhuman abilities and how he's saved the universe again. These things take a toll on me after awhile, especially when I'm already stressed out a million other things. There are some newer things that he's doing or rather not doing that are adding to the mix. His short term memory is seemingly nonexistent anymore. Short term memory has never really been his strong suit but it's never been…

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November 25, 2016
Gavin / Marriage Counseling / My thoughts

A major realization at marriage counseling

As mentioned previously, Lizze and I had our third session of marriage counseling yesterday. The boys hung out with their grandparents while we were there. The main topic of this appointment slowly became Gavin. Lizze and I are really struggling with Gavin lately and not for the reasons you might suspect. We're struggling with things from a mortality perspective. I don't talk about this very much because the more I talk about it the more real it becomes. The truth is, we don't know how long Gavin has on this Earth. His health is continuously worsening and new problems keep popping up. Some of the health issues are beyond rare and so no one knows for sure what to expect. What I know for sure is that his speech is…

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November 23, 2016
Gavin / Mission Debriefing / My thoughts / Schizoaffective Disorder

Should I be worried or proud?

Gavin and I were playing Minecraft tonight before he went to bed and this was the conversation we had about his latest mission today. This mission debriefing was a little concerning and a bit on the creepy side. Perhaps not listening to this with the kids in the room would be a better idea this time. The context of this mission involved someone in Gavin's world being murdered. Gavin was outraged by this act of violence and took it upon himself to return the favor as he put it. I don't know how to feel about this because the fact that he would want to murder someone, even in his world, is concerning. I worry about his thought process there but at the same time, when you hear what he ended up doing…

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November 21, 2016