When you have a chronically ill child you do everything in your power to fix the health issues. You try like hell to be positive and carry on with life as normal as possible. However, in the back of your mind, your always afraid of when the other shoe is going to drop. When the phone rings unexpectedly and it's the hospital or another specialist, your heart sinks because you have no idea why they would be calling you.  This may not apply across the board but it certainly does the Lost and Tired family, especially when it comes to Gavin. Today, an otherwise routine call to oncology has turned into an absolute nightmare for us. This is what happened and everything we know for sure at this very moment in time.…

The mail arrived bring us news of yet another doctor leaving for a new location. This time it's our developmental neurologist and she's leaving for the Cleveland Clinic. In all my years as a special needs parent, we have lost this many doctors at one time. We have to now decided if we move with her to the Cleveland Clinic or if we start all over from scratch with a new doctor. Both ways have their advantages and disadvantages.  If we follow her to the Cleveland Clinic than we don't have to start over with a new doctor. At the same time however,  the expenses involved with following her to Cleveland are likely to be outside of what we can afford in a regular basis. If we start over with…

After talking yesterday,  Lizze and I decided to reschedule Gavin's EEG.  It was supposed to be this Friday and last for 5 days.  However,  life has thrown us a curve ball and there is simply no way to pull this off right now. It's only being pushed back about 2 weeks,  so it's not a huge deal but the fact that we have to make a decision like this really bothers me. There are a number of reasons for rescheduling.  For starters,  Lizze would be the one going with him and she's not physically in a place to take that on right now. Then we have the cost itself.  Lizze would have to buy 3 meals a day for 5 days and that would add up quickly. We are still…

I have been really proud of myself for replying to as many of your comments as possible.  I love hearing from all of you and whole heartedly value your thoughts and opinions. Having said that,  I discovered a flaw in the new commenting system that I'm using.  That flaw is that comments that I reply to from the wordpress app on my phone don't show up in the livefyre comments stream.  They show up in the recent comments widget in the sidebar and in the wordpress dashboard but you folks won't see them.. I just wanted you to know that I'm replying to as many of you as I can,  I'm just going to have to do not from the computer until livefyre gets fixed. Thank you everyone for making…

Today is absolutely not my day. Sometimes I'm on target and on days like today,  I can't seem to do anything right to save my life. I don't see things improving tonight,  but I have to learn to except my limitations and move forward anyway. Tonight I'm going to try and put in about 5 miles again.  It's really the only time that I feel like I'm making a difference. By losing weight and getting back in shape,  I can be a better husband and father. I might not be able to do much else to improve the lives of my family but at least I will stay healthy and have the energy I need to be there for them.  That's got to count for something, right? I'm just feeling…

Something we haven't had to deal with for awhile is Gavin's excessive chatter. Gavin goes through these periods of time,  usually when manic,  where he literally talks nonstop. Much of the time he's either himself or seemingly just stringing words together. We have hit another one of these cycles recently. Let me tell you,  it really takes a great deal of effort to cope with the incessant talking. It reaches the point,  as it has today,  where I simply start tuning him out. I don't do that willfully either,  it's like a defense mechanism that kicks in after hearing the same friggin thing,  over and over and over again. Already today,  I have made several requests of God to please not let this be a manic phase. I do think…

I've been up all of 10 minutes and the boys are already driving me friggin crazy. Elliott is whining and Gavin is endlessly digging through the Lego bin. Emmett is busy bullying Elliott which just perpetuates the whining. Lizze and I have said this countless times,  while each of our kids are challenging in their own right,  it's the combination of all their behaviors and sensory issues that is what makes life in the Lost and Tired household. Today is going to be one of those days where the upper limit of my patience. I'm already stressed out to the max with Gavin's EEG coming up on Friday. Being without Lizze for 5 days is going to be very difficult.  I also worry about the toll this will take on…