We received heartbreaking news about Gavin’s health this morning 

If you follow me on Twitter, you may have seem my Tweet from earlier. For those that don’t, allow me to paraphrase.

As a parent to a child with , I sometimes make the mistake of thinking that things could never get worse. Wrong again. 

Gavin had an appointment with Dr. Reynolds this morning. It was the first appointment since we began increasing his last month. There weren’t many surprises because it was basically more of the same. While that would be a world full of for most familes, we’re used to all this stuff by now.

There were some changes discussed but I’ll talk about those in a later post because they really don’t matter right now.

Before we left Dr. Reynolds office, I remembered about Gavin’s platelets being low for the first time and let him know what immunologist had called to tell me about at the end of last month.

The normal range for platelets is 150-450. For the first time, she had noted that his platelets had dropped below 150 and were recorded at 147.

I’ve been stressing the fuck out over this because Gavin never does anything halfway and I had a feeling it was just a matter of time before the shit hit the fan.

After hearing this, Dr. Reynolds pulled up the latest blood count from Gavin’s blood draw last Friday.

In the course of about one week, Gavin’s  platelet count went from 147 all the way down to 122. As I’m hearing this, I felt like I was going to throw up. I fucking knew it wasn’t going be good and I’ve been fighting back the tears since about 11:15 am this morning.

First of all, this has nothing to do with any of the medications that Gavin is on, so that’s not a concern.

After leaving the office, my task was to immediately get ahold of his immunologist and let her know of the new results. When I called the office to leave her a message, she heard I was on the phone and told the nurse she would personally call me back in a few minutes. She did just that.

This is a significant drop in a short amount of time and I asked how low this really was. Between 100 and 120 is consider very low. Gavin’s sitting right on the border of very low.



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  • I’m praying for you and ❤️ stay strong and you will pull through.

  • Praying for you, and rest of you family!!

  • Awe man, I’m so sorry your is going through rough times right now. One thing to keep in mind is, yard by yard, life is hard, inch by inch, life is a cinch. Gods speed my friend.

  • Praying as always!��

  • Praying for your xx

  • I just sent a prayer for you and your . Hoping for good news…

  • My heart aches for all of you. I have a child named as well and nothing can prepare you for anything like this.
    Sending love, hugs and prayers to Gavin and the entire .
    Will be thinking of you all <3

  • Sending all good wishes from the uk

  • Thank you everyone. It just seems like one thing after another and this poor kid can’t catch any breaks..

  • Sending tons of healing thoughts and hugs for your whole family.
    Hope he is very well soon.

  • Praying that this time around the autonomic crisis doesn’t present. If it does, would it be possible for home healthcare nurses to come in?

  • Prayers.

  • Praying for you and your family.

  • My oldest son was born with and sepsis. I had never ever heard of it before or since. All I can is send hugs and support

  • Thanks Jessica Joy Mahala. Do they measure them different for adults because the normal range show 150-450 in the lab work above?

  • Thanks Jessica Joy Mahala. Do they measure them different for adults because the normal range show 150-450 in the lab work above?

  • Oh gosh. Im praying for you

  • In my prayers you always are xx

  • Praying for you and your family! ❤

  • We are really keeping you and your family in our . I can’t even imagine how scary this is. I really hope you get it all sorted and get some space to get your head around everything that is happening. Also praying for and that things turn around for you.

  • Praying

  • Sending prayers and good thoughts your way.

  • I’m praying for your son and family. I hope all goes well tomorrow. I admire all of your work and your bravery to share your journey with us.

  • I’m so sorry you and your family are going through this. Sending lots of prayers for you guys and Gavin.

  • Thank you all so much…. ☺️