For the first time in a very long time, I'm completely at a loss for words. I've never found myself in a position that was quite as painful as the one I'm in now. As you know, Gavin was moved out of the house for behavioral and safety reasons. Things have honestly been better since we have not had to deal with his behaviors. Life is far from perfect but it is getting better. The boys are finally beginning to unwind and we are slowly but surely moving forward. Sure, they're baby steps but progress is progress. Right? Now this is where I'm beginning to struggle. We discovered that Gavin’s heart rate is far from under control.  In fact, it's actually getting worse.  Today, at his IVIG infusion, his heart…

Last night I was kicked out of bed by Emmett and so I moved to the couch.  No big deal.  Then Elliott has a nightmare and joins me in the living room on the other couch.  When I woke up this morning, I saw this.  Bella is being eaten by the couch but has her front legs, wrapped around Elliott as though she giving him a giant hug. Maggie is buried in the couch at Elliott's feet.  It's like they knew that Elliott was scared and they were letting him know own he was safe.  It makes the moments when Bella drives us crazy, worth suffering through.  :-)

Lizze and Gavin are on their way home. For whatever reason, his infusion finished much faster than anticipated. His HR has not dropped below the mid 130's since at least 8am this morning when we first became aware.  He did top out today at almost 160 bpm. I have been in contact with nurses with neurology at both Akron Children's Hospital and the Cleveland Clinic.  They are speaking with the respective doctors and will call us back when they know what to do.  Another huge issue is that because Gavin isn't living at home right now, we have no first hand knowledge of what's going on with him.  We don't know what for sure, how controlled everything has been for him.  This isn't a knock on his grandparents in any…

Last night, Elliott and Emmett camped out in the giant tent inside Elliott's room. Elliott even slept in the tent as well.  The other night, Elliott wasn't comfortable sleeping in the tent but he did well last night.  It was so nice to see this type of togetherness between the boys.  We haven't scene this type of thing for a long time.  As more time passes, since Gavin moved out, the boys are growing closer and closer.  Don't get me wrong, it's not perfect.  However, who's looking for perfect? I know I'm not. I'm looking for happy and the boys looked happy and peacefully sleeping.

Emmett had an accident today while bouncing around.  It was a pretty close call because he fell and hit his face on the corner of a book case. He's really lucky cause he just and I mean just missed his eye. I will say that both Lizze and I about stroked out as he fell.  It was like it happened in slow motion and we couldn't get to him in time.  Thankfully, he is okay.

Today marks Gavin's 23rd antibody infusion. December will mark the 2 year anniversary of Gavin being diagnosed with Primary Immunodeficiency. Depending on how Lizze is feeling in the morning, she may be taking him for his infusion. It's easier for her to take Gavin than it would be for her to stay home the ever energetic, Mr. Emmett John. It's really hard to believe that it's been almost 2 years on this immunological journey. It's been a long road.  A road that was at times, quite scary. It's a lot for a kid to have to cope with and for the most part, Gavin does really, really well. We have the typical issues of him being demanding to the staff or at times, downright disrespectful. Overall, I'm really proud of…