The calm before the storm

It's been a super quiet day so far and I'm loving it. ☺  The boys had a great time with their Grandparents and they came home a few hours ago. Everyone is getting along and that's always a good thing.  We have zero plans for today and that's nice as well. It's going to be a busy week, beginning with a doctor's appointment for me, occupational therapy, and ending with the first day or school and Gavin returning to the Cleveland Clinic.  Also, we are supposed to begin making the plans for our Florida trip. 

0 Comments

Special Needs Parenting decisions are NOT easy

Lizze and I have found ourselves back in a place where we have to make decisions about Gavin's life that simply aren't always black and white.  Gavin has an extraordinary amount of health issues, and they require us to make very difficult decisions all the time. The most recent round of difficult decisions are in regards to his current blood disorder.  We're referring it to as a blood disorder because that's essentially what it is.  This problem involves transient levels across all his cell lines. Transient means that the levels keep going down and back up. In this case, some of Gavin's levels dropped within .03 of having to be immediately hospitalized if he were to run a fever.  While his numbers have climbed back out of the immediate danger…

0 Comments

Emmett and I had a great time

Yesterday, what began as a potential family trip to the movies, ended in Emmett and I going by ourselves. I was going to take everyone to see Transformers at the dollar movies, until I realized that Gavin wouldn't be able to go. Sticking Gavin into a potentially crowed theater, is a no go. Even I still forget these limitations from time to time. Gavin was super cool about it and Elliott didn't want to go anyway. Emmett on the other hand, had his heart set on going. Lizze suggested that she stay home with Gavin and Elliott, while I take Emmett. Emmett and I ended up have a great time and bought some popcorn after the movie, and brought it home for everyone who couldn't go. While I wish we…

0 Comments

Difficult decisions

The boys are spending the night at their Grandparents house. We opted to keep Gavin home with us because they were going to a large family gathering, and we're avoiding Gavin being places like that until after we see the hematologist. Lizze and I had been looking forward to going, but that was before we learned about Gavin's newest medical problems. We talked about having him hang out with my parents but they were unavailable. We both wish things were different, but this could quite literally be a life or death thing. If his numbers dropped again, and we didn't know, it's could be very serious. We are choosing to error on the side of caution. Making these types of decisions, are not something that everyone will understand. Frankly, nobody…

0 Comments

Super Major Update and Awesome News

I wanted to let everyone know a big thing happened while we were at Gavin's immunologist last week. I already mentioned how we discussed his labs and why his numbers keep dropping.  What I didn't tell you is that his immunologist cleared him for our trip to Florida. ☺  There's a great bit of detail that I'll save for another post, but the bottomline is, Gavin will be able to make the trip. That was something we were concerned about but also holding out hope that it would be okay.  Like I said, there's more to the story, but it's really late. I will say this.  There is a great deal of concern over Gavin's health, but his numbers, while still low, are out of the immediate crisis zone for…

0 Comments

Review: Contigo Autoseal Chill and Travel Mug (@GoContigo)

I wanted to take a minute and share a few quick thoughts on the Contigo Autoseal Chill water bottle and Travel Mug I received to try out. Over the years, I've accumulated quite a collection of water bottles and travel mugs. The ones that I find myself gravitating to are the ones by Contigo. I received a couple new samples the other day and I'm quite happy with them. The Contigo Autoseal Chill water bottle claims to keep things cold for 28 hours. I haven't had them for a full 28 hours but I put cold water in the water bottle about 12 hours ago and it's still ice cold. That's impressive, no matter how you look at it. Normally, water doesn't last for for more than an hour or…

1 Comment

Gavin’s IVIG infusion was a success 

Gavin had his IVIG infusion last night, because we were gone for most of the day. He did really well both during and after his infusion. Aside for physical exhaustion, there weren't any side effects that I was aware of.  Like I said, he was exhausted afterwards, and went to bed shortly after the process concluded.  Gavin looks a bit run down, but isn't complaining of anything, not that he really ever does. As far as I know, the only issue he is struggling with today is that his hip popped out once again. My understanding is that hurts like a bitch.  I'm not making any plans for today because I want him resting, especially because of how run down he appears to be. 

0 Comments

Major Update: All about Gavin 

We have a lot of catching up to do in regards to Gavin. Now that the server is up and running, I can finally do that. Gavin had his immunologist appointment yesterday. He did really well on the trip up and back. Sometimes he struggles in the car but he did great. We met with Gavin's immunologist and discussed everything that was going on with him at length. What we were able to confirm was that we have no idea what's causing the levels across all cell lines to go up and down. We can assume it's the Clozapine but there's no way to know for sure unless we remove it, and that's a huge deal. His levels have come up out of the more critical levels, but they're still…

0 Comments