The other day, Elliott decided that he wanted to go to Toys R Us and spend some of his money. He also decided that he wanted to buy something for Emmett as well. This was an incredible act of generosity and words can't express, just how proud of Elliott I am. Elliott picked out some Super Mario Bros figures. Emmett picked out a Nerf dart gun. They are both quite happy with their new treasures and I am a proud #Autism papa. :-)
Elliott, Emmett and I cleaned out and redesigned Perry the Tortoise's habit this afternoon. It was pretty successful and they each helped out in their own way. The boys are absolutely captivated by Perry and I like to take advantage of these moments for all they're worth. We talked about why Perry needs things to be a certain way in his home. We discussed how Perry eats and what kinds of things she eats. I explained why Perry needs the heat lamp and why,even though Perry is not an aquatic turtle, she still needs water. In a nutshell, I used their interest in Perry to expand their knowledge and teach them about new and exciting things. I like how they are learning responsibility and even some independence as they remember…
Lizze, Emmett and I were driving to run a few errands. One of these errands took us all the way to Fairlawn, Ohio. It's about a 30 minutes drive. As I was pulling off the exit ramp, I caught a glimpse of what I thought was something beyond cool. We made our way off the exist and navigated a few side streets and ended up behind a Holiday Inn Hotel. There is was, in all its awesome glory. The friggin Batmobile. I'm not talking about the crappy old school version either. We're talking the totally high tech, badass and unbelievably awesome Tumbler from The Dark Knight Rises movie. It was being transported by Warner Brothers and was just sitting back there, all by itself. We stopped the van and Emmett…
I absolutely love Emmett to death. He's an amazing kid and I'm so incredibly proud of him. As of late, he's become quite the little dictator. He literally has to be glued to me, every second of the day. He demands that I play with him and if I can't, for whatever reason, he completely freaks out. Today has already been difficult because I have office work that I have to get done, before noon and all he wants to do is play. Lizze is in no shape to be my surrogate today or any day for that matter. I'm beginning to become overwhelmed by this demand for my attention. On one hand, I truly consider it an honor to be loved so much by my son. One the other…
Part 2 Sorry about the delay in finishing this up. It's been a really long day. Basically,the bottom line is that Gavin’s health isn't going to benefit from being home and neither will anyone else. The truth is, no one can tell us what Gavin's future holds. No one can tell us how far this will progress and whether or not we will be able to stop that progression of the regression. Dr. Reynolds pointed something out that has given me a whole different perspective. He said that we should think about Gavin's quality of life. If we think purly about Gavin's quality of life, we have to ask ourselves, where is he happier and where does he get the attention he needs without the emotional expectations? Gavin told Lizze's…
Lizze and I met with Dr. Reynolds this afternoon to discuss Gavin's situation and do a meds check. Dr. Reynolds is still very much concerned that we are dealing with Childhood disintegrative disorder on top of everything else. That would explain the neurological issues and the regression. The problem is that I haven't the foggiest idea where the hell we would go for that and neither does Dr. Reynolds. CDD is so rare that almost no one specializes in this field, at least from my understanding. I've looked and haven't been able to find anyone. The other side of the coin is, does it really even matter anymore? The likelihood that anything could be done is minimal, does putting a name to it really make a difference? I apologize but…
Elliott's off to school and Emmett's literally bouncing off of every surface he can. Lizze has an appointment this morning and Emmett and I are going to do some running around before picking her back up. I want to try and get some work done around the house today and try and make our mortgage payment. That will feel good. One step closer to being caught up. Right now, I need every little victory I can because I'm feeling pretty defeated at the moment. I'm also suppose to hear from the doctor again today about Gavin. Hopefully, we'll have a game plan that will allow things to stay the way they are and at the same time, help medically stabilize Gavin so we can get him into residential care. That's…
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…