SERENE_ME

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Quick update on my darling daughter...

Friday, December 10, 2010

As many of you know, my DD has been ill for months with a series of connected illnesses that culminated in a diagnosis of Acute Disseminated Encephalomyelitis (ADEM) back in early November. This extremely rare neurological illness strikes about 1 in a million people and the vast majority of those afflicted are young children. That means that in Canada, at any given time, there are likely just 5 or 6 adult sufferers whose symptoms are all over the map and whose recoveries are as individual as they are. Translated further, it really means no one can tell us what to expect beyond the generally held belief that, if you survive the early stages, you should make a full recovery.

It turns out that Gillian has been fortunate on many fronts: her diagnosis did not take 6 months, she responded to treatment immediately thus never becoming completely comatose (some victims are in a coma for 6-12 weeks!) and she has a family with the financial and knowledge resources that enabled her mother to leave work indefinitely and apply her RN skills to her recovery and rehabilitation!

Often accused of being a cockeyed optimist (a title I wear with pride!), I am also someone who has learned to see the good in absolutely everything!

Still, this has been a very hard slog. Gillian's initial symptoms were overwhelming - unrelenting exhaustion, pounding headache, left sided weakness, monotone speech and aphasia, blindness, sleep disturbance, urinary frequency, muscle spasms, emotional lability, severe anxiety, activity intolerance, super acute hearing with noise intolerance... an extensive list. She is also 5'10" and 200lbs - a physical challenge for a 5'5" 50 year old who weighs 135 soaking wet!

Today we are one month out of the hospital and her recovery, while slow, has been amazing:

+Still legally blind, her sight is gradually returning and she can now read large print although needs to think about what she is seeing in order to understand a word or sentence.

* Her left sided weakness has resolved almost completely although she still has a heavy left foot causing her to limp and has balance issues but I no longer have to be with her while she moves from room to room.

+Her speech returned overnight last week - she went to bed with her truncated monotone and woke up sounding like herself - complete with speed, inflection and intonation! It was startling! She still has some word finding difficulty and often says the wrong word altogether but at least she is communicating again.

+Her exhaustion is still present and, not surprisingly, every neuro gain brings a couple of days of fatigue so deep she can barely move. Her anxiety level remains very high and any minor change in routine or schedule can provoke a mild panic attack. Still, we've noticed a positive correlation between heightened anxiety/stress and neuro gains so we are trying to find a way to use her stress to our advantage - quite the challenge.

So - she's getting better! She's absorbed to good vibes and prayers sent from afar and we feel surrounded by a blanket of support from around the world. Our local community of friends and family have been wonderful to us and we feel very loved.

Thank YOU spark friends for your prayers and support! Keep us in your thoughts! We've still got a very long road ahead of us.



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Member Comments About This Blog Post
  • BARBIETEC
    Here's a hug for your emoticon
    I am glad that she is getting better and I wish her fast and complete recovery!!!
    3437 days ago
  • MYOWNHERO
    I'm sure she appreciates all you do for her!
    3441 days ago
  • ALYFITN
    That's fantastic!!! It must have been amazing to hear her sudden return to normal speech pattern. You continue in my prayers. God bless you both this holiday season!
    3459 days ago
  • ANNE7X7
    It's good to hear that there's been some amazing progress in her recovery! I am thinking of you and your family and wishing your DD a fast and complete recovery!!
    3459 days ago
  • KELPIE57
    Keep up the positive attitude! Sending thoughts and prayers, and hoping that you also find humour. I't amazing how it can help recovery.
    3459 days ago
  • WATERMELLEN
    Grace under pressure: having an RN mum has to be the very best assurance of dedicated and devoted and knowledgeable care. Hope it's all uphill from here.
    3461 days ago
  • HEALTHY4ME
    Wow that is quite a list of Sx. I am glad her DX didn't take long and she is respoding fairly well. I think of you and your girls problems often. HUGS
    3462 days ago
  • no profile photo CD6210994
    I'm so glad she's getting better. What a debilitating disease! emoticon
    3462 days ago
  • no profile photo CD4382497
    Its fantastic that she's doing well and improving.
    May God's blessings and guidance surround you and your daughter's live in the coming year!!!
    emoticon
    3462 days ago
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