Inchstones and milestones · Whatever it takes

A new phase, with new goals

Last Friday marked one year since we received Aiden’s diagnosis. This anniversary snuck up on me a bit and I only acknowledged it in the evening. But when I gave it some thought, my overwhelming feeling was one of gratitude. We’ve come a long way in a year. We’ve got a good team of therapists; Aiden has had big breakthroughs with crawling and cruising; his left hand function has improved dramatically from a year ago when he wasn’t using it at all. In terms of my emotional response – the storm eventually blew out and I’m dealing with everything from a stronger place. 

And now we’ve upped the ante. This past Monday saw us sitting in a new neurologist’s office, and the consequence of that is breaking into a whole new realm in terms of treatment for Aiden. The neurologist approaches her patients with two  principles – working in a team with the therapists, and setting goals. She knows our physio well, and will keep the OT in all her communication loops. As for goals – she’s set us three: 

  1. Find a suitable playgroup for Aiden to start at in January. 
  2. Introduce constraint therapy. 
  3. Start with Botox therapy. 

We’re going to look for a mainstream (as opposed to remedial) playgroup for Aiden, as he doesn’t have any cognitive issues. There’s no shortage of options in our area so I’ll start phoning around and visiting, and I’m sure we’ll find the perfect spot in no time. 

In terms of constraint therapy, the aim will be to restraint Aiden’s right hand to force him to use his left. The theory behind this has changed somewhat. Previously they’d restrain a limb completely for a short period – say, put an arm in plaster for 2 weeks. Now the method is to use soft restraints for short periods over a longer time – for example, 20 minutes a day over 6 weeks. The goal is to get Aidy to use his left hand from choice, not just necessity as he does now. 

Botox therapy is last on the list, but is the first one we’ll implement. And it’s the one that scares me the most. As far as I understand it, the Botox is injected into the muscles in order to reduce their spasticity. While its in effect (anything from 6-18 months), it enables one to stretch the muscles that are in a state of constant contraction (because of the spasticity). In Aiden’s case this will help him step more easily and will prevent him going up onto his toes when he stands. The neurologist has identified 3 muscles in each leg that she wants to treat. The dosage of Botox is spread throughout the muscle so there will be multiple injection sites in each muscle. She said it’s not painful, but it does need to be done under general anesthetic. What I’m struggling with the most though is that Aiden will have to have his legs in plaster for 2 weeks after the procedure. This is to straighten out the muscles and enable the Botox to take effect. It’s also something that we’ll have to keep repeating as it wears off, so this will be round one of many. 

The idea of my boy in plaster for 2 weeks makes me want to cry, and that is before I even start thinking of the practicality of the thing. But the neurologist has told us that it will make a huge difference to Aiden’s mobility, and depending on how he responds, might even enable him to start walking in the next 3-4 months. He’ll have his first round at the beginning of October, so I’ve also got a few weeks to get my head around it. It will be tough, but if it makes him more mobile it will be worth it. Whatever it takes. Right? 


8 thoughts on “A new phase, with new goals

  1. You have all come a long way in a year…can’t believe it has been that long! It sounds like the neurologist is being very proactive which is good. Shucks, friend! I’m not surprised the Botox therapy and plaster casts makes you want to cry!! May you find the peace and courage you all need. Good luck for looking for the right playgroup. Lots of love and thanks for sharing.


  2. It seems like this doc is more up to speed with treatments. Will be lifting you all up in prayer. Aidy will love being in a playgroup! Yah! Go Aidy go!


    1. She really is Les. She says the main reason you need to see a neuro every 6-12 months is to find out what treatments are available. So very happy we’ve found someone who is so on the ball.


  3. Friend those are all big deal changes – love and grace to cope with each one. I think you’re all right about Aiden going to love play group – he’s possibly a little jealous that Cam gets to go to a “party” every day. And it will give you some space for new goals. Good luck with the Botox. Who would’ve thought it would be the little man in the house trying it out first? 😉 BTW who is your neurologist? Lots of love to you all, K


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