INFORMATION #3 02-06-2006
INFORMA TION
@ku!? ~ fi1? ~aIobr~
January 24, 2006
1
City Council Members
Elk River City Hall
Elk River, MN 55330
Dear City Council Members:
My name is Jody Galvin and my husband is Denny. We have 3 boys
Steven is 16, Joel is 9 and David is 6. We live at 19253 Tyler street in
the valley section of your proposed plan of extending 193rd out to
County 13. Please know that we are in agreement that we want what
is best for our growing city and we understand that sacrifices
sometimes have to be made for the betterment of the city. However, I
have a plea to present to you. If I might have a few moments of your
time I will explain our situation.
We have spent the last 4-5 years in planning and negotiations with the
city and contractors in order to make our house livable for David. The
county has paid over $30,000 for an elevator to transport David who is
wheel chair bound, so we can get him out side. As well as a garage so
David would not have to go out into severe weather/cold or heat since
his body cannot handle climate changes well. The county has also
spent over $37,000 to renovate David's living area. He needed a
bathroom that would fit a wheel chair, manual lift to get him off the
floor, out of bed and into the shower chair, wheel chair or toilet. An
accessible shower, therapy tub and a handicap accessible toilet were
needed as well. The sink had to be made accessible as well as
ventilation and heat. The hallway and doors have been widened as
well to accommodate David's wheel chair
In 1999 I gave birth to a very special child (his story is attached for
you to peruse at your leisure) He was instantly diagnosed to die. At
13 weeks into my pregnancy the ultrasound showed that his head was
resting on his back. We had to fight very hard for his life (the
Ambulance and Police force can attest to the number of times they
have visited us.) Please know that the area we live in has allowed us
easy access to children's hospital along with all of David's 11 other
doctors.
The horses have been my mainstay of respite and now a part of
2
David's therapy. It is called Hippo-therapy. When he is on a horse,
the sky is the limit for him. He gains balance, strength and
independence, the knowledge of freedom to move. It allows him to be
outside in an environment that encourages him to participate in life
which in turn builds his drive to survive. He has fought so very hard to
survive, then to maintain, and finally to gain strength and momentum,
I would hate to have that taken from him.
If the road goes through our property, please allow us enough room
for our horses as they play such an important role in the stability of
our family and the growth of David's abilities. We would be forced to
move if there is not enough room to keep them here. If it should
involve our house, we have to come up with the money to renovate
the new house for David. Sherburne county has already put $70,000
into an elevator and handicap facilities so my son may live here
comfortably as long as he is wanting and able. The county stated that
if we move, they will not renovate our new house.
Please consider the hardships that we have undergone to have a safe
and healthy environment for our family and the hardships it will cause
us to relocate. If we have to move, it will be near impossible to afford
purchasing and renovating a new house that would have enough land
for David's and my horses as well as be close enough to the cities for
his doctors.
Thank you very kindly for your time and considerations. Please feel
free to call us on our cell phones if you have any questions.
Denny 763-498-4932
Jody 763-498-4931
Sincerely,
Denny, JOdy, Steven, Joel and David Galvin
19253 T.vler Sf
Elk River, MN 55330
Phone (763) 441-0667 Cell (763) 498-4932
goinggaited@vahoo.com
3
As my Ave year olc\ living Angel, Davic\ (Namec\ after Davic\ from the bible story Davic\
,mc\ Goliath. Daniel (from the story of Daniel in the lions c\en) has leapec\ many mile
stones. Diagnosec\ at thirteen weeks gestation with a rare conc\ition relatec\ to Spina
BiAc\a callec\ InnencephClly anc\ having only Ave known survivors, Davic\ was c\iagnosec\
to c\ie. His neck hClc\ literally collapsec\ c\ue to the vertebra in his neck not forming
properly cClusing his heac\ to rest on his bClck. The mec\icClI Aelc\ leapec\ at the
opportunity for a science projed Clnc\ Clskec\ "Woulc\ you give him to science to stuc\y?"
I tolc\ them they woulc\ have to wait for DClvic\ to c\ie of his own accorc\. I believe Goc\
has plans for him anc\ he will be mac\e whole. For the next three months the mec\icClI
staff Clttemptec\ to persuClc\e me to "terminClte" stClting DClvic\ will never mClke it
anywClY, how inconvenient he will be anc\ cramp our life (When were kic\s ever
convenientO He will never live to birth. Ifhe lives to birth he won't IClst two weeks
even then he will be on machines for life support"... so you will have to pull him off
of the mClchines ClnywClY", ) To prove their point they put me on CI fetal heClrt
monitor where we coulc\ see DClvic\'s heart in color on this monitor. As the Dodor
WClS talking Clbout his conc\ition anc\ his IClck of Clny chClnce for survivClI, his heClrt rate
stClrtec\ to slow clown. As we wCltchec\ it became slower anc\ slower. The Doctor
promptly statec\ "He probClbly won't mClke it through the night" As CI teClr rollec\ clown
my cheek I turnec\ to my husbanc\ Clnc\ saic\ "This is the lClst time we or Clny one will
c\iscuss c\eClth or DClvic\'s conc\ition where he cCln heClr it. I tolc\ them I C\O not kill
chilc\ren, if DClvic\ is to c\ie he will have to C\O it on his own. They then sent me bClck to
my regulClr OB who Clskec\ me "whClt C\O you want me to C\O with you?" I tolc\ him to
treClt me like CI regular pregnClncy. He promptly forgot about me, tolc\ me to go to
Abbott on November sth for CI (-Section.
DClvic\ was c\e1iverec\ thClt morning to CI very nervous anc\ shaky mec\ical teClm.
The nurse thClt WClS supporting the Pec\iCltric SpeciCllist WClS c\ropping everything. I coulc\
see her hanc\s shaking from my table. ( I prClyec\ they c\ic\n't hanc\ my bClby to her) My
sister WClS tClping ClIl of this. As they were resuscitClting DClVic\ Clnc\ trying to stabilize his
breathing nurse tolc\ her I woulc\n't wClnt to see this Clnc\ that she shoulc\ stop Aiming
the operCltion. Julie stClyec\ strong Clnc\ tolc\ the nurse that this might be the only time I
woulc\ get to see DClVic\ Cllive anc\ continues Aiming. Once they got him stClbilizec\ they
startec\ to run sCClns to see whClt the c\amClge WClS .a(DClvic\'s heClc\ WClS not connectec\ to
his bClck Cis they once thought from the ultra sounc\s). They came to me stating the
gooc\ news is Davic\ has CI new c\iClgnosis. The bClc\ news is his prognosis isn't much
better.
This new c\iClgnosis WClS just CiS serious but offerec\ CI glimmer of hope for his
survival. But not his progress. He now hCls a c\iagnosis of SchizencephClly. A rare
conc\ition that hCls CI deft or cyst thClt c\ivic\es one hCllf of the brClin into two sedions. It
Clds very similClr to (erebrClI Palsy. The victims c\isplClY chClraderistics of CI stroke,
seizures, extrCl fluic\ on the brain ( hyc\rocephClly) Clnc\ very often hClve mClny, mClny
4
"
othet he'llth ptoblems 'lS well 'lS physic'll 'lnq qevelopment'll qeby. D'lviq h'ls h'lq his
skull pl'ltes ptem'ltutely fuse (ct'lni'llsynostosis) hyqtoceph'lly ( excessive f1uiq 'ltounq
his bt'lin), he is missing the communic'ltion c'lble th'lt 'lllows youI' bt'lin to
communic'lte b'lck qnq forth ('lgenesis of the corpus colosum) His tight h'lnq litet'llly
qoes not know wh'lt his left h'lnq is qoing. His deft is on the tight siqe of his bt'lin (
tight siqeq open lippeq Schizencephqly) It is 'lS ifhis left siqe h'ls been 'lffecteq by q
sttoke. To telieve the ptessute ftom the extr'l f1uiq in D'lviq's skull, 'l progr'lmm'lble
shunt W'l5 pl'lceq when he W'lS two q'lYs olq. It fqileq Qusing severe bleeqing in his
cetebt'll f1uiq. The qoctor st'lteq ifhe were 'ln 'lqult, he woulq tell us th'lt he hqs q
severe migr'line 'lS the cerebr'll f1uiq W'lS supposeq to be deqr 'lnq D'lviq's W'lS blooq
req. He h'lq 'l shunt revision 'lt two months of 'lge. D'lviq cont'lcteq q sevete
respit(ltory virus (RSV) thqt shut his bteqthing qown. lqte one night qS I W'lS sleeping
besiqe him his 'll'lrm went off, I got up checkeq everything, things seemeq fine so I
shut it off 'lnq went b'lck to sleep. This h'lppeneq two more times. The next time he
W'lS qr'lstic'llly worse. He w'lsn't bre'lthing right 'lt 'lll/ 'lnq he lookeq to be turning
blue so I c'llleq in 'l nurse who immeqiately Qlleq in q qoctot ftom E.R. The qoctot
put him on 'l ventil'ltorto bte'lth fat him just 'lS he was taking his last bre'lth. He W'lS
put into 'l meqically inquceq coma for 5 q'lYs.
He h'ls 'l he'lt intoler'lnce, reflux so b'lq th'lt he 'lspit'ltes, Qusing him to get
pneumonia which 'llso c'luseq his breqthing to shut qown so we h'lve to get him on
'ln antibiotic 'lt the right st'lge 'lftet he h'ls thrown up or we suspect him ofh'lving
'lspir'lteq. He is a bleeqer (fqctor 2 qeficiency) his boqy h'lq q rqre dotting qisorqer
anq his boqy qoes not like to re-'lbsorb qny blooq th'lt has spilleq out of his veins
(btuising). He also hqq a suppresseq immune system. We spent the first 18 months
off anq on in the hospitql.
Daviq hqq his heaq on his bqck ftom 14 weeks gestation until birth. The
Orthopeqic qoctot stqteq there was nothing wtong with his neck. I 'lskeq him how
Daviq coulq have his he'lq on his b'lck for 9 months qnq h'lve nothing wrong with it.
He woulqn't listen. I btought the s'lme subject up to m'lny qoctors. Fin'llly his
neuro-sutgeon sent us to the University to qo q genetic stUqy 'lnq the Geneticist ask
me when I WqS going to get his neck fixeq. They h'lq qone a bone stUqy on D'lviq 'lnq
founq his spin'll corq to qctu'llly be tethereq in his 3td qnq 4th vertebr'l. As he grew, his
neck qctu'llly W'lS getting Y'lnkeq by his spin'll corq. I cry when I think of the PTtrying
to stt'lighten his neck by plqcing q h'lnq on his shoulqer qnq one on his he'lq 'lnq
lightly 'lpplying pressute. He useq to cry 'lnq cry. D'lviq h'ls such 'l high p'lin tolet'lnce
th'lt when he cries, it bre'lks my he'lrt beQuse I know the pqin he is feeling must be
intoler'lble.
Befote the neck surgery he W'lS in 50 much p'lin th'lt I h'lq to prop the bottle qS
he woulqn't let me holq him. After the qoctor un-tethereq Dqviq's spin'll corq they
'llso plqceq 'l bone grqft in the front fusing his 2nd to his 7th vertebrq. (They put him in
'l com'l for nine qqys this time.) Pl'lcing him in to a h'llo with 8 pins screweq into his
5
skull to keep his neck stable. I t'emembet' people feeling so sony fot' him, poor baby.
have to chuckle, Daviq has never been so pain ft'ee. He was immeqiately happy anq
starteq leaming many new things while still in that halo. when we left the hospital
the qoctot' stateq Daviq shoulq qo gt'eat now, as long as he qon't stat'Ve to qeath.
Daviq has been hospitalizeq numet'ous times ft'om situations that t'ange from
aspiration pneumonia, seizures that cause him to stop breathing in 90 seconqs to me
just being pat'anoiq. He qiq have a feeqing tube placeq because he stoppeq eating by
mouth after the qouble neck surgery anq he was very tactile qefensive. Hateq to have
people touch him, especially arounq his throat. So baq that he woulq throw up.
Daviq has thriveq que to the superb care from 11 specialists anq the progt'ams he
is involveq with in the school anq the county. He has haq the most optimal
opportunities to make his life successful. The qoctots have finally quit preqicting his
qeath as he has far sutpasseq their wilqest qreams of life for him. Thanks to the
technology that the county has funqeq, Daviq has the equal opportunity to become a
"typical" little boy. I also feel because of the county programs anq the absolute
qevotion anq care of Social set'Vices, (Christine has not misseq one school meeting!)
Daviq is alloweq to be healthy anq leaq a safe anq functional life. He still has a way to
go.
Each year he gets stronger anq healthier. He still qoes not crawl like a
typical boy (he commanqo crawls) he still won't eat by mouth (it has been
pt'oven that he can but for some reason he won't) anq he cannot communicate
his pains or his wishes (he has leameq over 40 new worqs, he just neeqs to leam
the power of them), he has no qepth petception ( but he has finally leameq to
try to break his fall with his hanqs ifhe loses his balance) He is still a high risk for
hurting himself. He will still t'oll off the couch if alloweq to anq he still hits
himself with objects, perioqically has break through seizures that are not
contt'olleq by meqicines. Has uncontt'olleq phlegm that 2 qoctots are working
to finq the cause (Ear, nose anq throat anq the Gastrial/lntestinal) He likes to
throw heavy objects unaware of how it hurts himself or othets. Continuqlly
bqnging his heaq. As he is unqble to communicate whqt qoes hurt, I am
continually seeking the qoctots qqvice to make certain he is not bqnging his
heqq from pain. We believe it is his way of getting whqt he Wqsn't because if we
tum on one of his shows or pay attention to him he quits. He hqs to be
continually supet'Viseq on the floor as well. when he commqnqo crawls he will
go to the cupboarqs anq take out all of the pans (sounq typicaln but then he
will shut his fingets in the qoor. His bowels have to be monitoreq so he qoesn't
get pluggeq up anq have to be hospitalizeq for thqt as well. His beq has to have
very high rails as he can pull himself to a kneeling position anq I qon't want him
to pull himself over the rails anq fall to the floor. His beq has to be high enough
to promote healthy mechanics for lifting as well as to keep him from qny qrqft:s
that woulq compromise his immunity any further.