Wednesday, October 29, 2014

The Chariot Has Arrived






After more than seven months of considerable wrangling, Sophie's Medically Necessary Wheelchair Chariot has arrived, and it is a piece of art! We are very excited to have this piece of equipment in the house and loathe, actually, to send it off to her school. On other fronts, we still don't have a wheelchair bus, so we would have to transport it back and forth which will be problematic given its size and sophistication. The alternative is to keep this one at home and bring in her more and very used stroller for school use. She has an adaptive chair at school as well, and given the few hours she spends there, I'm leaning more toward using the wheelchair at home. It even has a tray where we can put toys and her iPad and food. I'm very grateful that this came through -- kudos to Anna and all the hard-working folks at NuMotion who had to make so many phone calls, fill out so many forms and just generally advocate for us over nearly half a year.

On yet another front, there's not much movement, yet, going on in Sophie's intestines. She's resisted the Magnesium Citrate and only mildly responded to the Miralax. I did a little research last night on the Interwebs and had a eureka moment when I read about people using cannabis successfully for things like Crohn's disease and irritable bowel syndrome, when diarrhea is a problem. Then one of my blog friends privately emailed me with the question about cannabis and digestion, and I hypothesized that perhaps over time, the Charlotte's Web has slowed Sophie's already slow digestion. I spoke to the pediatrician about this, and she agreed and suggested that she hasn't been drinking nearly enough, either, to keep things moving, that after a period of time without drinking nearly enough, you almost lose the mechanism that tells you you're thirsty, and then you don't have the impulse to drink and POW -- the cycle begins. It all makes sense to me, now -- she just hasn't been drinking nearly as much, particularly during the last few months when it's been the hottest and driest. That, combined with the decreased mobility (her norm), low tone (her norm), the slowing side effect of cannabis (new) and seizure medications (her norm) got her into a bit of trouble. We've got a plan, now -- Miralax every day for a week or so before reconvening. The plan gives me some peace of mind, but even Oliver said with considerable rue that he regrets how irritated he felt with Sophie over the last few weeks as she moaned and groaned and obstinately resisted drinking and sitting. I hate to say it, but what can you do? If I lived in medieval times, I'd walk with the flagellants, I guess, do some sort of penance for my human weakness. Instead, I'll chalk it up to nineteen years of dealing with other shit (like the procurement of chariots) that has taxed my stamina and made me very, very weary.

10 comments:

  1. You are such a good mother. How many times have I told you that? Not enough. Never enough.
    I am SO glad the chair has arrived.

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  2. Hooray for the chair! I'm grateful that you have it.

    So sorry about Sophie's digestive troubles. Please, please extend grace to yourself about this. How were you to know - especially with everything else you have to discern, figure out on your own, and do? Heck, there are times when I can't even diagnose/manage my own digestive difficulties. Sending hugs to you.

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  3. I'm emailing you a blessing, For the Exhausted.

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  4. Hindsight is always 20/20. Quit beating yourself up. You're a good mom.

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  5. i love reading every word you right. your intelligence and probing insight into every situation you encounter illuminates the happenings in such an engrossing way. and, you are an amazing mother. not a perfect one. if you were perfect, you'd be dead. you're very much alive, and awesome. xo

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  6. hahah 'you right' oh lordy. i was just sitting here rubbing my eyes- so, so tired- and WILLING myself to go running and i realized i made this spelling mistake.

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  7. I'm glad the chair has arrived. As for the rest, I'd hardly flagellate (is that the word?) myself over it. You are the definition of dedication.

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  8. Happy Sophie's chariot has arrived. It's so good Oliver can express himself so fully. I'm sure you help each other understand you're all always doing your best. And doing it beautifully.

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  9. So happy about the chariot!

    As for the rest, you are a smart, loving, intuitive, dedicated mother, who fights and fights and fights for your children's health and welfare. I know you know that, and it always hurts to think you could have done something to prevent your child from having one moment more of pain or suffering. But let me also say, as a person who suffers from a myriad of (including digestive) health problems, it's hard for ME to figure out what's going on in my body and what to do about it from day to day! Don't beat yourself up for not figuring out right away what was going on with Sophie. It sounds like you're on the right track and she'll soon be feeling better. Praying for that, and you.

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  10. I think you should use the new chair at home so you all can benefit from it, if that makes sense. I know I've had times when I've failed to take my children seriously only to realize it was something serious. It's the cumulative effect over the years that matter, or so I tell myself. Not the bad moments we all have, that seem to take up more of our memories than all the times we had the patience of saints. You are kind of a saint. Pretty much. Hope things move on for Sophie soon.

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