Gavin's been home about 24 hours already.  He's actually doing pretty well and we haven't had any direct problems with him.  That doesn't mean we aren't having problems though.  Sometimes, the emotional impact of something can be just as significant and disrupting as a physical one.  This is certainly the case right now.  I love Gavin and when he's not home, I worry about him and wish that I could bring him home once again.  However, it's clear to me, at least at this point that it's best that things are the way they are.  When Gavin's home, even when he's perfectly well behaved, there is a cloud of tension and anxiety that falls over everyone in the entire house.  I don't know how else to describe it. If you…

I meant to post this when it happened but sadly I forgot. I should have shined the spotlight on this because of how hugely positive it was. Better late than never. While Lizze was at the Cleveland Clinic visiting the endocrinologist this week, Emmett and spent the 2 hours we were there, just waiting for her to finish with her appointment.  Mr. Emmett John did so incredibly well. He was patient and very, very well behaved.  This was my favorite picture of him that day.  He's sitting on the steps in the Crile Building, waiting patiently for his Mommy to finish up and come see him again. These were the steps that Emmett and I walked up and down about half a dozen times that day.  He kept telling me…

With everything going on around me, I forgot to mention what's been going on with Gavin today.  Right after our wraparound meeting this morning, I was asked to visit the office and check on Gavin.. He was in the office, miserable due to allergies and problems with his eyes.  Gavin's immunologist gave us a script for allergy eye drops on Wednesday but it wasn't ready and the first chance we had to get it to Gavin was today.  He was so miserable and has ready been through too much this week, I just brought him home with me.  We gave him his allergy drops and they seemed to help. He spent the rest of the morning playing with Emmett.  Gavin then spent the night because Lizze's brother graduates from college…

We have another wraparound meeting this morning.  Lizze doesn't feel up to going so I'll be flying solo on this one again.  I just not into these meetings anymore.  Truthfully, I don't think they can help us and I feel like this is beginning to be a waste of precious energy.  It's not that the wraparound team is doing something wrong.  In fact, it's quite  the opposite.  They're awesome.  The problem is that we are dealing with a situation so complex and so convoluted that I don't think they are a able to help us with what we need.  Residential treatment is no longer a priority because we know that it's never going to happen. Besides, Gavin's health problems are way, way, way more important and a much bigger priority. …

I wish I had the energy to write everything that I need to say but I just don't.  This week has been a rough one.  The amount of disheartening events that have taken place range from devastating diagnoses to commentors that have gotten the better of me.  The news about Gavin and revisiting Ataxia-telangiectasia is crushing for me.  Knowing that it seems more and more likely that this may be the case just breaks my heart.  Will knowing for sure change the outcome? No it won't. Will knowing for sure change how we do things? That's a good question.  This isn't easy to think about, let alone talk about.  However, I feel that it's an very important part of our story and I want to share my feelings, thoughts and…

I have about 5 minutes to do a down and dirty update. Right now I'm exhausted, frustrated and confused.  I think I'm just done for today. :-( We met with the endocrinologist this afternoon.  What we didn't know was that this was a very special endocrinologist, that is very similar to a GYN. I still don't fully understand the difference right now because they both seem to be filling a very similar role.  It's official...  Lizze is in menopause. Although at her, extremely young age, it's known as premature ovarian failure. We learned today that they are the same thing. For those wondering, this is not a good thing.  Not a good thing at all.  Lizze had 14 vials of blood drawn for a ridiculous amount of tests.  She has…