This blog is my record of my journey with my son who had a rare, and eventually fatal metabolic illness. It is the story of the last year and a half of his life, his death, and after. I have shared this journey this in the hopes that is will not only help me come to terms with the realities, but also that someone along the way may find it helpful, as they face a similar journey.

This is my place to comment on events, blow off steam, encourage myself (and maybe you), share frustrations, show my love, grieve my losses, express my hopes, and if I am lucky, maybe figure out some of this crazy place we call life on earth.

The content might sometimes get a little heavy. As an understatement..


People who are grieving may write sad or difficult things and bring you down. This blog may not be for the faint of stomach or of heart. Read with caution and at your own risk.

If you are new to this blog, I suggest reading it from oldest to newest. It isn't necessary, as what I write is complete in itself. But this blog is sort of the result of the "journey" I'm going on, and I think it sort of "flows" better from oldest to newest.

I do hope that in the end you will find, in spite of all the difficult and heartbreaking things, things that are worth contemplating.

Welcome along!

Monday, August 23, 2010

A quick little update

Today I spoke to neurology and to palliative care about Joel's irritability and his seizure activity.

The neurologist decided to up his gabapentin, and palliative care said that it could even be upped a fair amount more if this does not work. That relieves me, because one thing I often worry about is running out of options. I'm always happy to know there is still a trick left in the bag, so to speak.

They also told me that it was not necessary to bring him in for another work up. Whew. I'd have done it, no problem, if they thought it was a good idea. But like I have already stated, there hasn't been any other symptoms, it looks very much like what happened last year at this time. So I'm glad they felt it wasn't necessary.

Otherwise it would be a trip to the ped for the "move all the limbs, poke the tummy and check the ears and eyes." And a bunch of x-rays. And an ultra sound. And blood work. And this would mean either a lot of separate appointments, or even worse, a hospitalization. I'm so happy to skip it all and try what makes the most sense, upping the meds.

Palliative care also said that it was ok to use the clonidine I give him at bedtime for the times when he is inconsolable. Which was good to know, specially as I already had the go ahead previously and so had used it this way a few times. They did say that I might find that even a half the dose would work, and would not make him so sleepy. It leaves the system quite quickly and so can be used 3 or 4 times a day at proper intervals. It's not something I prefer to do, but like I said, I'm always happy to know there is still a trick left in the bag.

Because listening to your child cry is exhausting, and it works on my spirit even when I think I'm "tuning it out" emotionally, staying calm and collected and all that. It's pretty awful, even when you are trying to keep your emotional equilibrium. So I'm hoping that the seizures stop. And I'm hoping the crying stops. And I'm even hoping for the smiles to start up again.

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