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<br />4 <br /> <br />" <br /> <br />othet he'llth ptoblems 'lS well 'lS physic'll 'lnq qevelopment'll qeby. D'lviq h'ls h'lq his <br />skull pl'ltes ptem'ltutely fuse (ct'lni'llsynostosis) hyqtoceph'lly ( excessive f1uiq 'ltounq <br />his bt'lin), he is missing the communic'ltion c'lble th'lt 'lllows youI' bt'lin to <br />communic'lte b'lck qnq forth ('lgenesis of the corpus colosum) His tight h'lnq litet'llly <br />qoes not know wh'lt his left h'lnq is qoing. His deft is on the tight siqe of his bt'lin ( <br />tight siqeq open lippeq Schizencephqly) It is 'lS ifhis left siqe h'ls been 'lffecteq by q <br />sttoke. To telieve the ptessute ftom the extr'l f1uiq in D'lviq's skull, 'l progr'lmm'lble <br />shunt W'l5 pl'lceq when he W'lS two q'lYs olq. It fqileq Qusing severe bleeqing in his <br />cetebt'll f1uiq. The qoctor st'lteq ifhe were 'ln 'lqult, he woulq tell us th'lt he hqs q <br />severe migr'line 'lS the cerebr'll f1uiq W'lS supposeq to be deqr 'lnq D'lviq's W'lS blooq <br />req. He h'lq 'l shunt revision 'lt two months of 'lge. D'lviq cont'lcteq q sevete <br />respit(ltory virus (RSV) thqt shut his bteqthing qown. lqte one night qS I W'lS sleeping <br />besiqe him his 'll'lrm went off, I got up checkeq everything, things seemeq fine so I <br />shut it off 'lnq went b'lck to sleep. This h'lppeneq two more times. The next time he <br />W'lS qr'lstic'llly worse. He w'lsn't bre'lthing right 'lt 'lll/ 'lnq he lookeq to be turning <br />blue so I c'llleq in 'l nurse who immeqiately Qlleq in q qoctot ftom E.R. The qoctot <br />put him on 'l ventil'ltorto bte'lth fat him just 'lS he was taking his last bre'lth. He W'lS <br />put into 'l meqically inquceq coma for 5 q'lYs. <br />He h'ls 'l he'lt intoler'lnce, reflux so b'lq th'lt he 'lspit'ltes, Qusing him to get <br />pneumonia which 'llso c'luseq his breqthing to shut qown so we h'lve to get him on <br />'ln antibiotic 'lt the right st'lge 'lftet he h'ls thrown up or we suspect him ofh'lving <br />'lspir'lteq. He is a bleeqer (fqctor 2 qeficiency) his boqy h'lq q rqre dotting qisorqer <br />anq his boqy qoes not like to re-'lbsorb qny blooq th'lt has spilleq out of his veins <br />(btuising). He also hqq a suppresseq immune system. We spent the first 18 months <br />off anq on in the hospitql. <br />Daviq hqq his heaq on his bqck ftom 14 weeks gestation until birth. The <br />Orthopeqic qoctot stqteq there was nothing wtong with his neck. I 'lskeq him how <br />Daviq coulq have his he'lq on his b'lck for 9 months qnq h'lve nothing wrong with it. <br />He woulqn't listen. I btought the s'lme subject up to m'lny qoctors. Fin'llly his <br />neuro-sutgeon sent us to the University to qo q genetic stUqy 'lnq the Geneticist ask <br />me when I WqS going to get his neck fixeq. They h'lq qone a bone stUqy on D'lviq 'lnq <br />founq his spin'll corq to qctu'llly be tethereq in his 3td qnq 4th vertebr'l. As he grew, his <br />neck qctu'llly W'lS getting Y'lnkeq by his spin'll corq. I cry when I think of the PTtrying <br />to stt'lighten his neck by plqcing q h'lnq on his shoulqer qnq one on his he'lq 'lnq <br />lightly 'lpplying pressute. He useq to cry 'lnq cry. D'lviq h'ls such 'l high p'lin tolet'lnce <br />th'lt when he cries, it bre'lks my he'lrt beQuse I know the pqin he is feeling must be <br />intoler'lble. <br />Befote the neck surgery he W'lS in 50 much p'lin th'lt I h'lq to prop the bottle qS <br />he woulqn't let me holq him. After the qoctor un-tethereq Dqviq's spin'll corq they <br />'llso plqceq 'l bone grqft in the front fusing his 2nd to his 7th vertebrq. (They put him in <br />'l com'l for nine qqys this time.) Pl'lcing him in to a h'llo with 8 pins screweq into his <br />