Monday, June 1, 2009

Waiting for the break in the road

The past few months have been the most exhausting months of my life. I know everyone is busy, and you may think I am horrible at time-management (sometimes I question it myself), but I have never before been in my life where every SINGLE day, there are at least 2 things on my calendar (along with normal day to day). I am more busy now, than when I was working full-time with one child. Maybe I'm just getting old? Quite possibly. :)

Enough of my pity party rant.

That little rant was my prelude to being behind with the updates with the insurance. As you may recall, we have been battling our insurance company for the past 3 months. They denied us of the surgery (ERG) the day before it was to be done.

We spent the entire day in Los Angeles on Friday. We had a few appointments, and for times sake, decided to knock them all out on one day. We met with Dr. Lee at CHLA. We discussed Gavin, and the insurance issues, and walked out feeling a little bit more positive about the situation. Dr. Lee is totally on board, and with his help we hope we can accomplish what we need to get Gavin the services he deserves.

Upon examination, there are no changes with Gavin (thank God). The thought of his condition getting better on it's own is non-existent in my mind, to be quite honest. I know what he has is very serious. That being said, I'm not trying to not be hopeful, but just realistic. I don't want a false sense of hope. The good thing is, the lesions on his retina remain unchanged. This is great! Great because it can be degenerative, and the few months that have lapsed since our last visit, nothing has changed.

There are a few options in regards to our insurance, Dr. Lee has up his sleeve. Please keep your fingers crossed, at least one of these is the answer. Everything is at a halt. We cannot get our genetic testing done until we have the ERG done. We cannot get the ERG done, until our insurance clears it. UGH. Talk about frustration. The other side of this is, I want an official diagnosis. If it is LCA, as we suspect (and know what we are hoping for as oddly as that sounds), and it is with the RPE65 gene, clinical trials are happening that I have talked about previously. The diagnosis needs to be confirmed, and the gene tested, as well as our blood work, so we can put the pieces of the puzzle together and begin looking forward to what the future may hold.

It is kind of like being stuck in single lane traffic, knowing the freeway will open up 3 miles ahead, but being in that "stuck" mode for the past months. We are waiting for our road to open to allow us to move forward.

The not knowing is killing me. Having the official diagnosis will not change anything with how I am handling the business aspect of what we do day to day to broaden our horizon with research. But what it can do is allow us to zero in on specifics that relate to the disease. LCA has possible instances of seizures, etc.. No known instances yet with Gavin, but is things like this that bother me, without having the name of what he has.

I feel like it will certainly help me understand him further. It's hard to explain what I feel. I know what the result of what he has is. That is visual impairment. Not knowing what is causing that, where the gene is, what gene it is, etc... is excruciating at times.

Ok, I'm done.

We also had an appointment with the child psychologist. This time it was for Landon. He has told me, on a few occasions he is very sad about Gavin. This was said completely out of the blue. I decided it would be best to have Landon speak to her. She did some play therapy with him, observed some of his drawings, etc. It was informative.

She says he is ok, but does get a sense he is a little sad. Possibly of the unknown. He also told her he gets very sad when he sees mommy cry. Yes, heartbreaking. Poor little guy, I felt very sad for him at that point. Knowing on his shoulders, he is sad for his little brother, and also worried about his mommy when he sees her cry. I haven't seen any change in his behavior, he is such a happy 5 year old who loves and teases his little brother just like any other sibling. I know it's an ebb and flow of emotions he is experiencing. I go through that daily, and I can relate. WE walked away with a little bit of homework, and some big insight for me.

We also had Gavin's Braille visit happen, as well as his teachers who assessed him from SB schools. I need to run, and can't elaborate, but will save for another post. Gavin is officially a student!

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