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<br />4 <br /> <br />other health problems as well as physical anq clevelopmental clelay. Davicl has hacl his <br />skull plates prematurely fuse (cranialsynostosis) hyclrocephaly ( excessive fluiq arounq <br />his brain), he is missing the communication cable that allows your brain to <br />communicate back ancl forth (agenesis of the corpus colosum) His right hanq literally <br />qoes not know what his left hanq is qoing. His deft is on the right sicle of his brain ( <br />right siqeq open lippeq Schizencephaly) It is as ifhis left siqe has been affecteq by a <br />stroke. To relieve the pressure from the extra fluiq in Daviq's skull, a pt"Ogrammable <br />shunt was placeq when he was two qays olq. It (qileq causing severe bleeqing in his <br />cerebral fluk!. The cloctor stateq ifhe were an aqult, he woulq tell us that he has a <br />severe migraine as the cerebral fluiq was supposeq to be dear ancl Daviq's was blooq <br />re~. He haq a shunt revision at two months of age. Daviq contacteq a severe <br />respiratory virus (RSV) that shut his breathing qown. Late one night as I was sleeping <br />besicle him his alarm went ofF, I got up checkeq everything, things seemeq flne so I <br />shut it off anq went back to sleep. This happeneq two more times. The next time he <br />was clrastically worse. He wasn't breathing right at alii anq he lookeq to be turning <br />blue so I calleq in a nurse who immeqiately calleq in a qoctor from E.R.. The qoctor <br />put him on a ventilator to breath for him just as he was taking his last breath. He was <br />put into a meqically inquceq coma for 5' qays. <br />He has a heat intolerance, reflux so baq that he aspirates, causing him to get <br />pneumonia which also causeq his breathing to shut qown so we have to get him on <br />an antibiotic at the right stage after he has thrown up or we suspect him of having <br />aspirateq. He is a bleeqer ((qctor 2 qeficiency) his boqy haq a rClre dotting qisorcter <br />anq his boay qoes not like to re-absorb any blooq thClt has spilleq out of his veins <br />(bruising). He also haq a suppresseq immune system. We spent the first 18 months <br />off anq on in the hospital. <br />Daviq hClq his heaa on his bClck from 14 weeks gestation until birth. The <br />Orthopeqic cloctor stateq there WClS nothing wrong with his neck. I askecl him how <br />Daviq coulq helVe his heaq on his bClck for 9 months anq have nothing wrong with it. <br />He woulcln't listen. I brought the same subject up to many qoctors. Finally his <br />neuro-surgeon sent us to the University to qo a genetic stUqy anq the Geneticist ask <br />me when I was going to get his neck fixeq. They hacl clone Cl bone stUqy on Daviq anq <br />founq his spinClI corq to actually be tethereq in his 3tti Clnq' 4th vertebra. As he grew, his <br />neck Clctually was getting yankeq by his spinClI corq. I cry when I think of the PTtrying <br />to straighten his neck by placing Cl hanq on his shoulqer anq one on his heacl anq <br />lightly applying pressure. He useq to cry Clnq cry. Daviq has such a high pain tolerance <br />that when he cries, it breClks my heart because I know the pClin he is feeling must be <br />intolerable. <br />Before the neck surgery he was in so much pClin thClt I hClq to prop the bottle as <br />he wou!qn't let me holq him. After the qoctor un-tethereq DClviq's spinal corq they <br />also placeq a bone graft in the fi-ont fusing his 2nq to his 7th vertebra. (They put him in <br />a coma for nine qays this time.) Placing him in to a hCllo with 8 pins screweq into his <br />