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**cactigirl96** · 08-20-2009, 05:13 PM

i think i know...

i know i have no medical experience, and i may sound crazy, but i may know what is wrong with your daughter. this sounds totally irrelevant, but i was watching an episode of "House" one night. a nun was had a rash and kept having allergic reactions to something and kept getting worse. she was hospitalized because she went into anaphylactic shock in the clinic. she was still deteriorating, and even in a clean room, she was still getting worse. but she had a copper implantation years back. yes, this is the allergen that was the cause of her symptoms. the trigger to the reactions was when she was washing some copper dishes at the covenant kitchen.

your daughter could have been exposed to the same metal as the rods in her back, causing an allergic reaction.

if this is the answer, dont thank me, thank hugh laurie!

**purplepixie** · 08-26-2009, 05:24 AM

One month to go

It has been a bit since I have had time to sit and write on here. Summer has kept us busy but now we are quickly approaching the home stretch it seems. Khya's surgery is set for 23 Sept. Right now we are doing our last summer trips and then the day after I return we do pre-op.

So far she doesn't seem concerned yet. Her big worry is when she will be able to return to Disneyland, and whether her clothes will finally fit her right. The worries get left for Mom. Guess that is what we are here for. Other than the general, they are cutting open my child, and all the what ifs that could go wrong, my hardest dilemma is dealing with what I am putting her through. I say it that way because at the moment she experiences no pain, no other symptoms other than visual. Yet, I am sending her in to have a surgery that is going to put her in pain. And unlike a shot, this pain is going to last awhile.

Don't get me wrong. I know that now is the best time for her. If we wait it will get worse and can eventually lead to more problems down the road. Somehow though that doesn't ease my pain of knowing that I am going to make her hurt. Maybe I just worrying and being silly - but I can't seem to help that.

My other big difficulty at the moment is dealing with her school. After several failed attempts at calling them I went down and spoke with the vice principal. after letting her know what was happening and what we needed she said she would call the district and get back to me, still nothing. This after telling her that we would be out of town until school started. Very frustrating. She also said she did not think it was in the schools budget to provide a teacher or tutor, yet I thought they had to? I mentioned the 504 plan and she asked if Khya was on that. I said no, but thought she should be. Any advice out there? AS it is I will not get to deal with this till school has started, I leave town tomorrow.

On a brighter note - since I don't want to leave things depressing. A family friend is being kind enough to sew Khya her own hospital gowns. Checked with the charge nurse and got the ok. So, my daughter will be the oddest and in her opinion, best dressed child on the ward. Skulls and roses. What can I say - she's 12. A big thank you to all the kind words I have received on here. Though I don't write much right now I do read the posts as I can and keep all of you and the kids in my thoughts. It is nice to have such a far reaching and strong support network.

Thanks,
Jules

**jrnyc** · 08-26-2009, 11:42 AM

your child is disabled..for now....and qualifies..absolutely!! please look for a special ed advisor where you live...call the state if need be...she is absolutely entitled....... TALK TO A LAWYER if necessary..there is a law suit if they do not accommodate your daughter..i used to be called to testify at these things!! they are legal hearings....& legally binding....budget does not matter, as the federal law & state laws REQUIRE she be served!!!! this is true for EVERY state in the U. S. due to the federal law element...search the internet, as there are organizations for this stuff..tho they often have a long wait...you are not alone in having your daughter"s rights violated!!! she qualifies as physically disabled for now...i know you might not like the sound of that, but if it gets what you need, then consider using it! a doctor's letter to verify is needed..

please PM me if you would like..i am out the door now to appt, but wanted to let you know this...

best of luck
jess

**jrnyc** · 08-26-2009, 05:44 PM

this is for jules & all parents of kids struggling with physical problems, whether temporary or permanent....the IDEA (individuals w/disabilities education act) & the 504 guarantee a free appropriate education to all children, that means disabled too.......otherwise, you have the right to access PRIVATE services & the public school system must pay...a case was settled in nyc in 2007 proving that the parents didnt even have to try the public school program first..but that is an exception, not precedent, & i wouldnt advise it...what i would advise is calmly & sweetly letting the school &/or district know what your child will need & for how long a doctor thinks it may be needed..could be forever, could be temporary...& sweetly ask how/when/where the services will be supplied!! also, kids are entitled to OT/PT from the schools...most schools have an "approved list" if there are no school therapists to provide the services within the school building...

try online "disabilitydeception.com"...also, just research the internet & also your own public school district..they dont have a choice..the law was created to protect the kids..not to worry about the school budget..fair to $$$ men or not, that is how it is!! it is not parents' job to worry about how the principal/district will pay for it! there are lawyers who specialize in special ed cases...

best of luck
jess

**babachi** · 08-27-2009, 08:21 AM

Jules and all
Where I am you are eligible for a tutor after the 10th or 12th consecutive day of absence. However, as Jess pointed out, with a 504, you can get a tutor much sooner.
Bethany

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