Saturday, March 21, 2015

Where Does It Hurt?

How I wish this were true for us right now...

When Ronan has an off day, I quickly try to figure out what’s wrong. 

Did Ronan not sleep well?  Is he hungry?  Is his diaper soiled?  Has he hurt himself? 

When I ask Ronan if something hurts, he’ll sometimes point to his head.  Other times he’ll point to his ankle or to his foot.  Many times he’ll point to where he had a muscle biopsy six years ago.  He points to the scar on his thigh and signs hurt.  We taught him the ASL sign for “hurt” when he got that “ow”. 

Since Ronan is non-verbal, we’ve had to be creative with getting information from him.  When Ronan is engaged, he’ll type a response on his output device:
I’m teaching Ronan how to spell parts of the body so he can be more specific. 

Ow ___ (head? tummy? leg?) 

Ronan doesn’t always want to type, so I printed a picture of the body to use with him.  Within minutes of printing the image and showing it to Ronan for the first time, when his sister asked him, Where does it hurt?, he pointed precisely to the body part that continues to ache: his legs.  

Now, when I see Ronan slowing down or struggling to walk, I bring him the picture and ask him where does it hurt.  He points to the legs Every.Single.Time.   

Body outline from a Google image search

Where does it hurt?

Legs. Legs. Legs.  

Ronan has figured out how to relieve some of the pain he’s in himself.  He did that when he turned on the back massager, laid it down on the couch, and sat down next to it so that he could get some relief.  Ronan, who used to be very active and get into everything and climb on everything, will sit still with his feet or legs on the back massager for up to 20 minutes. 
Ronan tries to work through the pain that I have not been able to take away.  
Watching Ronan try to self soothe more frequently these last few months had us worried.  He has pain that I have not been able to take away.  I had already raised our concerns with his doctors, but it was time to revisit the issue.  After several conversations and medical appointments, physical therapy and orthotics were ordered.  Ronan was still seeking relief for his feet and legs though. 

After more conversations, more appointments, and some testing, we got some troubling news.  That came last week.  After the testing, when the doctor said, “Come.  Come sit down so I can talk to you,” I knew that what she was going to say was not going to be good news.  I was right.  It was not good news at all.  Ronan has neuropathy.  Not only that, but irreversible damage to some of his muscles has likely already happened. 

Things have been difficult for Ronan for quite some time, thank you vaccine injury – the gift that keeps on giving, but I wasn’t expecting to hear that awful news.  Adding one more medical issue, one more diagnosis, and adding another painful reminder of just how fragile Ronan is was crushing.  Processing what I heard, what it meant, and realizing that there we may not be able to make it better for Ronan was literally, figuratively, and mind-numbingly crushing.  I haven't fully recovered from hearing any of it.  

We’re waiting for some more testing to be done.  When we get the results, we’re hoping for an answer.  But as with other complications Ronan has suffered in the past, there’s no guarantee that we’ll get a definitive answer.

In the meantime, we're hoping.  We're praying.  We're do everything we can to relieve the pain, even if it's just temporary relief.  We'll do that while Ronan’s mobility continues to decrease and as my frustration and worry increases exponentially. 

Ronan’s hurting.  So am I.  It shouldn’t be this hard.  But it is.  

xo, Cat

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