Monday 16 September 2013

Sad Sunday

I felt: Rather depressed about my son's condition. He's had a really bad time the last 24 hours or so, in a lot of pain. And we don't know what to do about it. Saw a specialist over the summer who basically said they don't know why he gets these spasms, don't have any medicine that can help, nor any recommendations of what else we could try :(

I thought: Totally agree with a blog I read recently that said living with a child with special needs isn't like ending up in Holland when you planned to go to Italy. It's like ending up in Syria instead of Italy!

I slept: 7 hours in 5 chunks.

I worked out:  62 minutes of Ballet with Jennifer Galardi's Ballet Body, which I really enjoy.

I ate:  156g choc biscuits

I am grateful for:  A supportive partner to share in the good times and the bad.

7 comments:

  1. It's so hard (and exhausting!) to watch your child suffer. It must be so frustrating to keep looking for answers and get none.

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    1. Well, I know that sometimes there just aren't any answers, but it doesn't make it easier to accept. Thanks for the empathy :)

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  2. Sorry to hear about this...I didn't realize. Are they like seizures? Does it happen often? I wish I could offer more than sympathy. Blessings and peace to you.

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    1. They are kind of like seizures, but if they were seizures they'd be able to treat them. As it is, they are muscular spasms not caused by neurological misfiring. Instead, they are caused by 'external' factors like pain and getting ill, hence why they say they can't treat them. So, they say to give him pain killers, and that's their best advice :(

      Fortunately, they aren't bad all the time, but as he was just getting ill he got them. He also gets them when he flies, hence why we haven't flown with him for nearly two years, despite most of my family living abroad... Ah well.

      Thanks for the blessings, we can do with all we can get :)

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  3. I wish I could get you out of Syria! I hope there are some better long-term solutions. I'm hopelessly optimistic (yet also pessimistic...) about there always being a way to improve things. Sending you lots of goodness and care...XoX

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    1. Hi MM,

      I know you've been through a lot of this, too. Trying different alternative remedies, working on dropping medications gradually, never sure if what you're doing is the right thing. I'm sure there are plenty of things we can try, just that I haven't met anyone who's had good results from anything for this, really. Well, except the folks in the States on medical marijuana, but that's not an option here :/ I think we'll probably try chinese herbal remedies, it's just finding the time and money, but you know about that, too!

      Hugs,
      Kxx

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    2. Yes...the expenses can be rough. I know you can go broke quickly trying remedies. There are still issues Pele is having with her sleep and diet and mood, but I am very grateful we are where we are, and I do feel exploring alternatives can be very rewarding, but also frustrating. It's definitely not a straight-forward path. I agree with you on the medical marijuana--not a very valid option in my opinion, but then again I guess it depends on your situation what seems reasonable to try!!

      I am truly intrigued by Chinese medicine. To be honest that is one of the modalities I seriously considered studying. It would be insanely, crazily expensive for me to study. I so wish I had the savings and a nearby school to study it in. I have heard some amazing things about the results of it. I guess a medical modality thousands of years old is bound to have some merit. I hope that if you explore it you find it helpful. I have a friend who swears acupuncture has helped her (she has not done much with the herbal part of TCM), but I have not yet done that either.

      Part of why I want to get a job, even if only part-time, is so that I can afford to try things like acupuncture, etc, for issues that I still struggle with in my own health.

      I dunno...lots to think about!!!!

      XOXO,
      MM

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