Boy, when it rains…

In the past month I’ve missed something like 6 days due to various medical situations. First my father got incredibly sick and I actually expected I was going to be attending a funeral. Then my wife, kids, and I all got some awful stomach bug. Now we’re almost healthy, but our youngest has a cold.

So naturally, Alex’s brain surgery and OMMP situation have to go to hell next.

The brain surgery is no surprise, but now it’s real. We have a scheduled appointment for the prep work as well as the surgery itself. We knew it was likely. Alex got really sick not too long ago, and it was due to the one medication that could have prevented brain surgery. (I mentioned Alex’s Sirolimus issues in July)

This wasn’t unexpected, but somehow I was holding out hope we could find some other option. Brain surgery just sounds awful for a non-verbal child who already beats himself up too much.

On top of this, we’re having some trouble with the OMMP process. I might get into more details later, but right now I’m just hoping there have been some miscommunications or something. The short version of the story is that Alex could lose his OMMP card soon, through no fault of ours.

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3 Responses to Boy, when it rains…

  1. Dad says:

    I sort of left it up in the air here, but yes, my father is doing all right now. We’re still worried about him, but he got through the life-threatening part, and hopefully he’ll have “seen the light” now and be taking super-good care of himself.

  2. Emma says:

    I just came across your site and feel so broken-hearted reading about your son and watching a few of the videos. We are in CA and my son is 7, moderate autism, non-verbal but thankfully no SIB or seizures. I can only imagine how deep your pain is to watch what Alex is going through. Don’t ever doubt that you did the right thing by transferring his care to the state because your other children also need you & just you and your wife cannot handle the level of care and supervision that Alex needs. You say that you want to spread the word about your son’s story so I will do a short post and link to this site. I wish there was more I can do to support you. May God grant you peace in the midst of all of this.

    • Dad says:

      At this point, spreading awareness is our main goal, so anything you can do to help people understand our situation is absolutely appreciated. Thanks for your support. It’s certainly been a trial, but hopefully some good can come from what we’ve gone through. Maybe somebody in a similar situation will turn to cannabis as a second-to-last resort option instead of waiting until it’s already become a major crisis.