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The end of an Era

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If you haven't spent a good deal of time in a hospital reciecieve care then some of what I am about to say may not make sense to you.

I had my final appointment at Shriner's hospital for Children today.   turn 21 in August and after that date they will no longer follow me.  The only posibility in going beck in the next three months is if i need my MAFO's adjusted. 


My main doctor wasn't there tody so I saw his partner who I don't usually like because he is usally patronizing but today wasn't as bad.  There were the things I knew he would tell me and sum surprising things.  My knee will continue to hurt when it is stiff because my kneecap is being pulled out of place and there is nothing for it.  My spine is straight and I walk fine.   My left side is tigheter than my right which is unsusal and usally seen in hemiplegia (left or right side of the body) CP and not dipliega (upper or lower half of the body) which I have.   Apparently I haver arches in my feet that wernt there before.  I had flat feet but the muscles in my feet tightened and pulled.  That is why it hurt when I did so much walking in DC, because my MAFO's  weren't casted to support them and my feet weren't baring the weight right. 

I saw the PT for the pain in my back.  My hamstrings are tight and are pulling on my pelvis which is the cause of some of the lower back pain.  And the one I wasn't suspecting.  My stomach muscles are weak and are not doing their part in holding me up.  I could barely do any crunches and I don't know when that happened it is pitiful.  He reshowed me everything and I vowed to actually do the stretches this time.

They put arch supports in the braces and replaced the horribly dirty straps.  They are now royal blue and even though most people wi;l not see them when my socks re folded over I will.  Talked to the social worker and she thinks Voc Rehab might help pay for my last year of college. And she is going to get e names of specialist to see here and in DC.

I also participated in a study about children with CP, there families, and activity.  It was a bit below me question wise as I was on the upper end of the age scale but that's okay.  The lady was nice her son is my Age and goes to Uni at Manchester.  her accent was calming and we talked about every thing from college life (In England they don't have roommates) to drinking, to Harry Potter-(She says as far as Audio books go the UK one is superior).

I'm was sorry to leave I have known the nurses forever and they are like family.  I'll miss all of them most were out to lunch when I left but i hugged on of the PA's who had sweated trying to get my ankle to 90 degrees for casting.  The place has changes so much, new building, and procedures and sometimes their advertising is patronizing and horrible but the people are amazing, my dad says it is becaused they are not worried about finances but to me  they just care.  And how the nurses know everyone so well, that is how I want to teach.  If they can do it so can I.

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