5 replies to this topic

[AJ65]

Hi, I am new to this website - my daughter is now 9 and at the age of 2 became ill and was left with c4/c5 damage to her spinal cord. She is now ventilated dependent. My question is to other parents or older children - have their been times when it all really got on top of you. I guess life is like that for all of us - but what is the best way to help my daughter get her spark back. She has very limited use of her hands so trying to find activities is sometimes hard - if anyone has any suggestions of different activities they found possible I would love to hear from them.
She is happy 99% of the time - but sometimes particularly after an illness it takes her a little while to get back to normal. Would love to hear from any one - Thanks

[Aparr]

AJ~ I have no experience with what you are handling but I would love to welcome you to the forum! There are a lot of wonderful people here with experience and encouragement. I have no doubt you'll have both coming your way shortly.

I have a lot of admiration for you. It has to be difficult for your family; including your daughter, to handle this situation. It sounds like she is doing well with everything. Having a positive attitude is fantastic!

[goose]

Welcome aboard!!

I'm a C4/5 and can't imagine having to deal with this(SCI) as a child or having to watch a child go thru this. Bless you both!

Does she have any wrist control or does she use splints for anything? I can use a touch screen computer....lots of games .

Have yall tried painting or planting flowers? I know there are lots of adaptive equipment/tools to help do different things.

Talking with an OT might be a good idea. I don't have children and just not familar with what a 9 yr old likes doing.

[scaldedcat]

I'm also sorry I can't help with any advice, but welcome you to the site. I had my accident just prior to my 41st birthday, so for your daughter and yourself to have to contend with this with it happening to her at such a young age must have been, and continue to be unbelievably hard. My best wishes to you both, and as for her being happy 99% of the time, she sure puts me to shame. May she continue to feel that way and find out that with an attitude like her's, she is sure to find something that she will aspire to and undoubtably achieve. Take care.
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[wheeliebear75]

I was 14 so MUCH older. But it can be very hard (not that it's easy as an adult) when you see your friends running around & as a younger person not being able to ride around on bikes & go out on your own is a hard one to swallow. I 2nd goose's question as to how much hand/wrist function she has....it'll help us better match her/you with technology & ideas to reduce the boredom.

[AJ65]

Thank you to everyone who replied - my daughtger has no wrist movements - they are completely floppy - but you are right - there are lots of computer games out there (which she does enjoy. The gardening side hadnt thought of so I will certainly look at that. I think the one message that came through to me is that no matter how old you are when it happens - its still hard isnt it - not only for the people who it happened to - but to those who love you. Things are a little brighter today - so thats a good sign - thanks again to everyone - hope to talk again soon.