Guest guest Posted April 26, 2005 Report Share Posted April 26, 2005 http://www.caringbridge.org/az/hailee/ Hailee at day five of life started having grandmal seizures.. she spent 6 weeks in the hospital trying to figure out what was wrong.. she was diagnosed with two brain disorders... heterotropic gray matter, which means some of her brain cells when developing never developed so she has dead non working brain cells.. the other brain disorder is white matter scarring, which usually shows up in premies who are oxygen deprived.. hailee was neither, so they dont know why she has that one.. hailee was constantly sick and always in the hospital, the nurses would joke and say your room is on hold we will see you in five days, which was about it.. she was having feeding issues once she got of the bottle, refused to eat, but didnt have swallowing problems, just reflux.. she didnt sit until she was 9 months, walked at 2 1/2, still to this day has problems and cant run, skip or jump. has low muscle weakness only in her lower body..is constantly tired.. we started having issues with her blood sugar, she would be admitted with sugars at 9.. 77 is normal value.. the doctors at that time were allready suspecting mito, her biopsy was lost.. she was also diagnosed with a disorder called septo optic dysplasia, which involves the brain, all of her hormones, her vision.. she is on total growth hormone replacement and synthroid.. this disorder also causes her to have many crashes, they sort of walk hand in hand.. we had a second biopsy done when her broviac line was installed, those results where lost also... dr. gregg our gentic dr said he isnto goin to do any more testing, he is positive she has mito, and since there isnt a cure he is just going to treat any ways.. he says we may never know what she has until she passes away.. hailee has severe sensory issues, asthma, feeding issues, carbon dioxide problems with breathing, seizures (6types), was just diagnosied with OMS (dancing eyes dancing feet) its a rare disorder with tremors, and a nuroblastoma tumor... She is a very sweet happy little girl, she has lots of autistic traits, which makes doing things with her impossible.. but she is my cutie.. She has her kindgergarted graduation coming up soon... time has flown.. and Hailee Quote Link to comment Share on other sites More sharing options...
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