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Hit With Summer


 Today is Leo's last day at school for the summer, but not Leo's last day of Kindergarten.
We are going to do a re-do of this year as it was just a teeny, weensy, bit rough in the school department. Between the astronomic number of daily seizures, all new therapists, teachers and school, there's been a nutty kind of flavor to our daily fruit cake of life. However, I think we finally started figuring things out a couple weeks ago, so fingers crossed that it won't take as long next year...
A lot of the issues stemmed from simple miscommunication and lack of proper supports, and hey, it's not like I've ever done all this before. Leo didn't come with an IEP instruction manual. 
But even with all the muddle on the grown-ups end, Leo managed to develop new skills, and despite all the wretched seizures too! His mobility has improved a lot making him independent on the stairs and upping his soccer kick. I can't believe it yet somedays, but he's 100% potty trained with such successes as natural outdoor potties, porter potties, beach potties...He can do 'em all! Who would have thought it possible? This kid.


Speaking of his seizures..
We are closer to figuring them out too. The VNS device that he had implanted end of April is showing promising results. It takes time to show any effects since they turn up the frequency and strength of the pulses very slowly. One or two settings every two weeks. He's had several adjustments at this point, and we can definitely see a shortening of his seizure duration. When I catch the seizure and apply my handy little magnet, it seems to stop the event right away.  I've also noticed just the past couple of days the device "catching" the seizure as it was starting since the last adjustment we changed the pulses to every three minutes. He's still a bit snowed after, but even the fact that he's "responding" to the therapy is really really good. It means that once we find the right setting the device will work to calm that crazy extra brain activity. It's high time! He's been seizing every day now for a year. It's really taken a toll out on all of us. 


In the midst of darkness, there will always be a light..



Last weekend we took a spontaneous trip to the ocean beach for the afternoon. There is a temptation to feel like a hermit, or perhaps an outcast to society, when you have a special needs child. Some days I give in to this temptation, but on some days I can dance it off and we do something crazy. Something crazy like a normal outing to the beach.


It ended up being a perfect afternoon.
The overly hot sun gave way to a warm evening mist that seemed to blanket us in the particular feeling of well being that can only be found by the ocean shore. It certainly had an effect on Lion boy's mane!






Summer has crept her way into our little corner, and I can only hope, hope and pray that she will continue to be gentle with us as we turn our winter battered hearts to the sun, and always, always hope for the light.


Comments

  1. Matushka AnnaJune 10, 2016 at 12:06 AM

    Those curls!!! <3

    So glad for the many successes and steps forward. Glory to God.

    ReplyDelete

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