I’m getting Gavin into the cardiologist ASAP

One of the things many special needs parents are lacking is a friggin instruction manual for their often times, quite complicated children.

I realize that no child comes with a set of instructions but most parents are able to muddle through.

When it comes to special needs children, it’s almost a cruel joke that they don’t come with at least guidelines. I mean honestly, who do we need to talk to about this?

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Special needs parenting is hard enough as is.  Parents like ourselves, could benefit from a basic set of guidelines or in structures. At least I know I would.

When it comes to Gavin, I find myself in desperate need of a goddamn instruction manual.

With everything he has going, he’s so complex and so unique that no one can really tell us what to do.  For example, the issues he’s having with his heart rate and blood pressure are serious and yet because what he has is so incredibly rare, no one can tell us what do.

We’re sorta feeling our way through the dark. 

We’ve decided that we are going to visit his cardiologist and find out from a cardiovascular standpoint, do we need to worry about his heart rate? If so, at what point is this something that we really need to worry about?

I need some sorta of guidance because I am completely lost right now and have no idea what we do or where we go….


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  • CarlBainbridge says:

    I read through two or three of your posts on his heart rate before it clicked with me. When our son was younger we had this concern as well. however in our case the end result was basically to not worry about it. The reason behind this being that while his heart rate went up quickly if he was active, it also went down quickly as well. 
    It did require a bit more activity then it does with Gavin (partly because our son does not have any version of low gear) but when we sat him to chill out his rate would be normal within minutes. 
    Check him for safety, by all means we must never be to careful, however hopefully he will end up much the same as our son.

    • lostandtired says:

      CarlBainbridge low gear? What’s that? I don’t think any of my kids have a low gear.. 🙂  The concern for me at least is the impact of his brain  not controlling things properly has on his heart.  Hopefully you’re right and it will be of Jo consequence.  🙂

      • CarlBainbridge says:

        lostandtired LOL they really don’t come with low gear do they lol. We did have the same initial concern as well as an overheating concern (his temp was permanently in the lower end of the low fever range until he was 8) but it ended up going away with no lasting issue that we could ever find

  • I agree, the cardiologist definitely needs to be involved because SOMETHING is going on. Poor Gavin! Prayers for you, Lizzie and the crew! <3

  • Michael Giaimo says:

    Prayers from NJ