I thought that it might be a good idea to bring everyone up speed on everything that is going on with Gavin. I've got a ton of new readers (thank you) and I think now would be a good time to get everyone on the same page. Operation Hope, is what I call our mission to help Gavin overcome the obstacles in his life. This includes finding any and all ways that we can slow the progress of, cure or reverse his mounting list of very, very serious and life threatening health issues. Gavin is 13 years old chronologically but 4 years old developmentally, in many but not all areas. Gavin loves Lego’s, video games, Sonic the Hedgehog, drawing, writing, reading and going to school. He's very creative and can be…

We haven't really had any serious behavioral issues with Gavin lately.  He's been doing really well making better choices and we have been letting him know that. The problems we have been having seem to be a result of continued neurological degradation. Gavin's  been having a lot of pain today and we aren't really sure what's going on.  It almost sounds like reflux but reflux hasn't been an issue for a very long time.  It's frustrating because God live him, he isn't capable of giving us accurate, reliable information about anything really. This is especially true when it comes to his health. Tonight, we gave him a small glass of milk to try and figure out if it was reflux related. We were very, very clear with him and we…

We never did get to see Dr. Reynolds today.  However, I did manage to get all the scripts and refills while we sat there waiting for 2 hours.  It was absolutely ridiculous and I finally pulled the plug and we walked out.  Dr. Reynolds came out and apologized for everything.  I'm pretty upset but I harbor no ill will toward the good doctor or any of his staff.  In fact, I can't say enough positive things about Dr. Reynolds. Anyway, we got what we came for and that's what really matters.  We'll need to get some face time but all the meds are in order and that's what's most important right now. I do need to say that Gavin, while completely engrossed in his tablet, did awesome for that two…

Been sitting at Dr. Reynolds office with Gavin for over an hour now.  My Mom drove us cause of the bad tire I just discovered on the van. Gavin's quietly playing on his tablet but I but it gets to be ridiculous after awhile.  We always call ahead to find out about any waits, so we can adjust our schedule accordingly.  We did so today as well and everything was running on time and without delay. Of course, as soon as we get there, the schedule goes downhill and we are once again waiting.  Waiting is something that happens quite often for us and generally speaking, it's not that big of a deal. However, I seem to be running short on patience today and if this appointment wasn't so important,…

I spoke with the jury commission this morning about Lizze's situation. I explained all that we have going on as well as accept responsibility for not doing this last week when we sent in the paperwork. The woman on the phone was very nice and said that I need to have something faxed to them before noon..  If that happens, she will present the letter to the judge and the judge can then excuse her.....hopefully. While this is something we don't usually talk about, one of the reasons Lizze is sick all the time is because of severe IBS and gastroparesis. She's had these for years and both are made worse by stress. I will spare you any more details but suffice it to say, it's pretty bad. The ironic…

I spoke with the Cleveland Clinic on Monday. A nurse for Gavin’s neurologist is supposed to call me back to discuss what's going on with Gavin. While on the phone, I decided to check the status of the records transfer to John's Hopkins. As far as that goes, we're dead in the water because they never received the release I signed and emailed back a few knows ago.  I have to do this again and see if Lizze's Mom can fax it from work for us. This has to get done.  Once the release is signed and received bybthe Cleveland Clinic, it will take about 1 to 2 weeks to transfer the records. . That's where we stand at the moment. As soon as I hear anything new, I'll be…

So Lizze was notified that she was selected for jury duty last week.  She sent in her form and her number was so high that we never thought she would be called.  Guess what? Tonight she was called. This presents a major problem. She's sick.....still and there's no one to call and explain this to. Aside from that, Emmett's in a flare and Gavin has a very important appointment with Dr. Reynolds in the morning.  There's no one to help with the boys either.  Even if she wasn't sick, this isn't something she could handle. I'm not entirely sure what to do.  She physically can't go. Her number, along with over 100 others, we're all called and so they would likely send her home anyway. At this point, the only…