Fox and Broom

A mom's adventures in keeping healthy, keeping her sanity, and making stuff.

Frustration

It’s been a long, long time since I last posted about my middle son, my Little Owl. He was delayed in his gross motor skills probably from birth, but it was not noticeable until he was 4 months old. He is now 4 years old. And he is still slightly delayed. And we still do not know why.

We just made a trip to a neurologist in Seattle. Who pretty much told us that, yes, there is something going on with Little Owl, and no, we still do not know why. Which is all stuff I already knew. We just spent $100+ (with help from the in-laws) on a trip to hear stuff we already knew. It is really becoming ridiculous. The docs in Seattle want to see us every 3 to 6 months only to tell us the same goddamn stuff every time. Just call me on the phone and bill my insurance for your time. Save me the gas, food, and lodging.

The neurologist IS ordering a slew of new tests. Which I am hoping our new insurance will cover. They have already denied the genetic test ordered by Little Owl’s biochemical geneticist. I’m not sure they are going to approve an MRI and a spinal tap.

Now, I see the improvements Owl has made. I just want to make sure he keeps improving. We do not necessarily¬†need a diagnosis, but it would be handy to know what we are dealing with. Is it something that we are already treating correctly with the vitamins we are using? Is it something that could be helped with other medications? Are the vitamins actually doing anything? Could a change in diet help? These are questions we can’t answer because we have no clue what we are dealing with. It could be Congenital Myasthenia Syndrome. It could be a slight variation on Mitochondrial Disease. It could be a number of things.

Don’t get me wrong. My Little Owl is wonderfully perfect in his own way. His hypotonia will be with him for the rest of his life. I just want him to be able to understand it and be able to live alongside it. When his weakness hits, it hits hard. There have been times when he will lay down in the middle of a grocery store simply because he is so exhausted. He will literally play until he drops. I do not know of any other four-year-old who will ask for permission to take a nap (“Mommy, I am so tired. Can I please go lay down?”). And yes, I see you. You, right there. I have seen the judging looks you give to my child when he lays down in the store. When he wobbles his way up the stairs to go down the slide he loves to play on. I have learned a lot in living with Owl. I have learned not to judge too harshly or too quickly. We are getting better at living life in the moment, because the next moment may simply be exhaustion.

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One thought on “Frustration

  1. Janeet S on said:

    Personally, I think he is the most awesome little boy!!! I don’t understand why people would look at you funny cuz he lays down in the store. Kids do weird stuff all the time. He’s tired so he does what comes naturally.
    I don’t think anyone understands that everyone has something wrong with them. No one is 100% perfect, healthy, or anything. Some may look it, but they aren’t, they may not know it yet either.
    I dislike how people judge without knowing the story.
    Keep up the good work with Little Owl, he is awesome and you guys are doing fantastic!!

    Like

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