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Hello Everybody (Read 1816 times)
Little Luca
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Whatever it takes

Posts: 343
Somerset West, South Africa
Gender: female
Hello Everybody
Aug 1st, 2012 at 5:19am
 
Hi all my moyamoya family

Wow, it's been soooo long (over a year) since I visited that I feel so out of touch.

I hope all the old regulars I know and missed are hanging in there; and I hope all the the people I haven't met yet are finding some sort of peace and answers that we all crave.

You wouldn't believe how far Little Luca has come. She truly is my hero; I look on at her strength and resilience in awe. 4 going on 10.

She's at normal school in her age appropriate class. She does struggle with the physical side like, for example, her mind wants to cut a straight line but her forced lefty just can't get it right yet, or she wants to draw a circle/face but her muscle tone just doesn't allow for it YET. For this reason she has a permanent facilitator with her in class assisting. She is also actually the youngest in her class so we are considering keeping her back next year.

She wants to do everything other kids are doing which is giving Nicky and I grey hairs. She only walks now, no more crawling or walking gadgets, but is sufficiently unstable for us to be constantly on her case about slowing down. She wants to do all the sports her brother is doing: hockey, rugby, cricket, soccer, etc. Her attempts at an awkward and unstable run normally result in her falling after a few steps.

The last year hasn't been without incident, mainly due to her instability. She's fallen and hit her head, landing up in hospital for monitoring

This year Luca and Nicky returned to Newcastle for a check up with the neurosurgeon that did the bypass. It was all good news and Dr Mendelow was super impressed with her progress.

Her eyesight has been something we've been focusing (pun!) on recently. She has quite a squint and it appears that she only really has sight out of one eye due to the strokes. We've seen a number of specialists and spoken to people who only see out of one eye and really the feed back is there isn't much we can do about it now but there's no reason she can't lead a (fairly) normal life like this. Considering she was completely blind after the strokes, I'll take what we've got.

Life sometimes just consumes our time but I look forward to reading some of the posts that I've missed to see how you're all doing.

I also have some questions about familial links with moyamoya but I'll see what others have previously posted and I'll post my question on the appropriate board.

Take care and stay strong
Mark (Luca's Dad)
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« Last Edit: Aug 1st, 2012 at 5:21am by Little Luca »  

1st stroke in September 2008
Bi-lateral mm diagnosis
2nd stroke in November 2008
Left side surgery in December 2008
Doing just great!
 
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mg12061
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Posts: 946
Albany, USA, usa, 492, 84, NY, New_York
Gender: female
Re: Hello Everybody
Reply #1 - Aug 3rd, 2012 at 6:54am
 
Mark it's great to see you stopping by to give us an update on Luca. She's pretty amazing! I feel like you, Kathleen has also been my hero. I'm so glad to hear that Luca is doing so well. She has probably already componsated for ehr vision changes on her own.We held Kathleen back her first year of school and it was very positive. Sounds like she has a determination that will help her to accomplish everything she wants in life. I know that can be scary too. I pray for her continued success and recovery and that she continues to amaze us all. Thanks for the update!
Mary Grace
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rgrace5  
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LA
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Moyamoya survivor since
1999!

Posts: 334
Kneeland, USA, 15, 113, C
Gender: female
Re: Hello Everybody
Reply #2 - Jan 19th, 2013 at 8:38pm
 
Mark ~
Good to hear about Little Lucas progress, her success.  I've followed her story diligently since the beginning.
Being w/o sight in one eye isn't a huge problem ~ I was born with the 'morning glory' vision that seems to affect mm'ers. Thought it was natural. Getting over strokes can be tough.
Am so happy read this post from you. Love to all of your family,

Linda
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Linda (LA)
 
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