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…

Lizze just called me from Akron Children's Hospital and told me that Gavin's heart rate is so high that it keeps setting off the alarms.  Right now, his resting heart rate is in the 140-150 bpm range.  While they were sitting in the lobby waiting, his HR was in the high 130's.  He's not nervous about his infusion at all.  In fact he looks forward to them. The problem is that it's not good for his heart rate to be that high, let alone a sustained HR that high. We are making phone calls in order to figure out what we are supposed to do.  His autonomic specialist is at the Cleveland Clinic but Gavin does have a kickass neurologist at Akron Children's Hospital as well.  In fact, this doctor…