I've tried so many times these past few days to write, but my brain just isn't working well lately.
Brainfarts happen and they happen BAD. I think my Potassium is very low from the Diamox coupled with being a non-compliant Micro-K taker. My legs are cramping and I have had very severe episodes of confusion...followed up by less severe confusion!!
Today has been awful.. I can't talk...Hell, my spellchecker can't even figure me out, so I'm keeping this short.
This week is jammed up with testing for my daughter Katie (9). She's scheduled for , brain MRI, cine MRI, cervical, thoracic and lumbar MRIs, multiple x-rays of the spine (looking for bony malformations- like scoliosis and spina bifida) and 3d-CT of the head.
They'll be dividing these up between 2 days and attempting them without sedation. Katie is terrified of needles/IVs so I try (whenever I can) to give her options that exclude them.
We see the neurologists and neurosurgeons at The Chiari Institute on Friday (9/19)
I need this all to be over soon. My worst nighmare will be if she has syringomyelia too.
Her brain MRI shows the lower portion of the cervical cord and there is some suspicious looking dark areas that have me very worried. We already know that she has 7-10mm cerebellar tonsil herniation. It looks like retroflexed odontoid too, but, hey, what do I know? I've only been staring at Chiari related MRIS online for 4 years now, which, by the way, is probably 3 years, 11 months and 29 days longer than our pediatrician.
Anyway- we'll see what this week brings.
Please excuse my possible absence... I'm not sure how much time this week will afford me.
Also- There is a National Chiari Awareness Walk this Saturday 9/20.
If you'd like to walk or sponsor me, please visit ConquerChiari.com . There is an online form in the upper right where you can register in your city as a walker.
If you'd like to sponsor me... This is the link
I will be at the LI Patchogue event.
WALKER: Jen Kelly
PLACE: Patchogue, Long Island NY
Thank you for your prayers for my Katie. I know I don't even have to ask for them.
3 comments:
Jen
I'd just like to thank you for starting your blog. My almost 5 year old son was diagnosed with chiari in April with a possible syrinx. We did a follow-up MRI in July and there was no doubt that he now had sm as well. We did decompression surgery on 8/1 and I'm so happy to report that 6 weeks later you'd never know he had surgery except for being a zipperhead.
Thank you for helping get the word out about chiari
Thanks for working through all your troubles to keep us updated. My prayers are with you and your family as you work through all of this.
Hey Jen,
Great blog! If you don't mind I would like to add a link to your blog on mine.
I tried sending you an email about getting together after the walk through your information on ASAP but it came back to me. If you have time to get together after the walk we will be up for just about anything. I look forward to seeing you and your family tomorrow.
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