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!

Sunday, August 29, 2010

Another Little Update

The meds seem to be working on Joel's irritability. Or pain. Whatever it is. The last 5 days he has been much happier, even smiling and laughing once again. Which is a huge relief and makes me very happy.

His seizures have NOT become more controlled yet. In fact, the past three nights he has had increased seizure activity once again. It is easy for me to tell this now, because if he has a prolonged, intense seizure, his 02 falls and the monitor goes off. This doesn't happen for the shorter, "smaller" ones, just the longer, "bigger" ones. (Short and long refer to the actually time the seizure takes, smaller vs bigger have to do with the intensity of the seizure, which seems somewhat correlated to length, but not always directly connected, if that makes sense. For those of you who are really interested in seizures from a medical standpoint, or from your own children.)

So the sat monitor has been going off for the past few nights. I can somewhat counter-act this by placing him on a "low dose" of 02. This brings his oxygen level up enough that it doesn't drop below 90 when he has a seizure. What I can't do is rid myself of the unease I feel as I lie in bed and hear the subtle but distinct noises of the seizure activity.

This morning (5am), after lying in bed and dozing on and off to the noise for about an hour, I just got up and got him up too. He was wakeful between the seizures anyway, and I didn't want him to wake Steve up. Plus I figured that at the end of the extended period of seizures, he might have a bit of a crying jag before falling asleep (which he did).

In any case, I didn't get much sleep last night. I'm ok with that. It is, thankfully, Sunday, and I got a bit of sleep later in the morning. I'm just happy that Joel is happier.

Of course, not too crazy about the uncontrolled seizure activity for several hours at a time. I just gave Joel his first dose at the second and final "step up" for the med that the neurologist gave us. I know that she'd say we might have to wait at least a week until the meds work, but...? Maybe I have been spoiled, but when we have upped his Keppra in the past, it has worked almost immediately. This time it's gabapentin, but it's hard not to get a bit concerned when the seizure activity seems to be almost increasing again, while we are upping the meds.

But that is what this disease is like. Every time a problem is fixed, you go back to dreading the day with the problem that can't be fixed anymore. For now, I am just happy that Joel is smiling once again. His laugh is so beautiful.



    On another note....sorry about the seizures!

    <3 you call me sometimes! XoXo

    Sarah D

  2. I'm so glad he is smiling again! I know how scary those seizures are--and not knowing what to do about it. I hope you see some improvement with the higher dose soon!

  3. Hi my name is Quinett and I have been following your posts for about a month now. Your Baby is so beautiful. I have to admit sometimes when I am laying in bed I think about what you are going through and how strong you are for your family. I have no children of my own but maybe one day. I do not know you but I admire you from the bottom of my heart. You are a very strong woman. I am glad that Joel is smiling for you again :) I will keep you and your family in my prayers.