May-June 2009
Jack is enjoying year 2 at
The surgery was a success and Jack will be in plasters form the knee down for 4 weeks day and night. The nights we are not looking forward to. Then jack will be cast for new AFO’s with a hinged heel, this means it will be the first time Jack will be able to walk and flex at the top of the ankle whilst walking. Jack will also be required to sleep with these on for the next 6 months to ensure the length in the legs.
Jack Has had a setback from the operation and has a hospital
infection in his left leg. After 2 weeks of wearing the plasters they were
removed and his left leg oozed puss. I was upset at this sight. I can’t believe
what this little boy must endure. What surprised me was the lack of feeling
Jack must has in his legs due to the SDR that was performed in
Cora (mum) has to have an emergency back operation due to a
bulged disk and pinched sciatic nerve. The straw that finally broke the camels
back was the constant lifting of the wheel chair and Jack’s extra weight of the
plasters. Mum needs to come up from
Jack is finally learning to walk again in a completely new way. He is very weak coming out of the plasters but due to us making Jack bike ride daily and a daily physio schedule We can see him gain the strength daily that is required to walk. We are so proud of him, he never complains he is a true inspiration to our family. A real champion.
Jack is now post plaster and he said “walking bare feet” was like walking on “sharp diamonds”
Four weeks later after tireless efforts to get Jack’s strength returned he is back on his elbow crutches, walking beautifully with no inward-leg rotation and is walking within the safety of our lounge room unaided. Amazing! The physios and Dr’s were not sure if Jack would take to hinged AFO’s. I said ”You will see he WILL do it”
Jack and Izabella were the two finalists in their classes for speak up 2009. They were both presented with 2009 badges and certificates. How proud are we!
Jack’s end of term report comment for KPS primary school
principal says “ Jack continues to
impress me with his positive attitude to life and to learning, despite the
many, many challenges that are presented to him throughout this journey he
travels. He really is an inspiration to me and I commend him on all he has
achieved-academically and physically-this semester. Well done Jack”! Terri
Reid.
09/12/07
December 2007
It is now 10 months since Jack had his operation. Jack has
been shuffled between starting pre-primary and intensive physio sessions. This
included individual swimming lessons, regular physio visits to our home as well
as visits to PMH. Jack’s Primary School also participated in Jack’s recovery by
putting a morning program together that required all the students to be
involved with regular fitness and targeted jack’s needs as well. When Jeremy {Dad}
arrived home after work he would take Jack for a bike ride which has helped
strengthen his legs immensely.
Jack is now capable of swimming in a pool un-aided and can
pull himself out over the edge from deep water. He is still along way off from
co-coordinating his body movements easily as other children do. Jack is jumping
in and diving with my help to get him into a standing balance.
Jack is walking everywhere with his elbow crutches and is
using his frame when he is playing outside. In our home Jack can walk around
comfortably everywhere however his arms are still up in the air. With time,
strength and more confidence we believe this will change.
Jack can get onto furniture by himself and into the car
without his Afro’s on by himself. His sitting posture is
Straight, whereas
before the SDR Jack had a classic CP curve of the spine in sitting and bent
knees.
He is now sleeping throughout the night.
It has been wonderful to see Jack so relaxed in his body and
the everyday movement required with less strain attached.
The Children’s Hospital at Westmead have asked Jack to be the
face of their fundraising Charity Ball and Auction In May where Jack will be
asked questions and he will make a speech on the night. We will be going as a
family to the event and are looking forward to seeing all the staff who helped
in Jack’s recovery.
19/06/07
Since the SDR we have focused on Jack gaining his
strength back. He is back at school doing 3 hour mornings as he has Physio
appointments every day. Jack has been bike riding, swimming in the spa which I
believe has helped him tremendously in getting cardiovascular fitness back. We
are excited to say Jack has taken his first independent steps with
"illdiko" his Conductive Ed teacher on the 16th May,
nine weeks post op. We were told not to expect him to walk for
another 3 months so Jack is way ahead of schedule. He now walks with his heels
more down to the ground and his legs wider apart, he is still needing lots of
core strength and walks with his hands up high to protect himself from falling.
Another surprise to me is to see Jack swimming in the winter ocean without
hesitation and when he gets out of the water there is no rigid,
contorted body that shivers and uncontrollably shakes. We spend a lot of time
fishing and crabbing with our kids and now with the loss of spasticity Jack is
more steady in a boat and on his feet and has lost that nervous edge that
he had when his body was fighting against the spasticity all the time. Jack has
also gained a new posture and he stands so straight now, everyone comments on
this and it is very noticeable when he walks.
A window for parents into the weeks after the SDR
5th
March
Jack’s Surgery 1pm – 6.30pm
6th
March -Day 1
Post Operation – Jack had Morphine,
Valium, and Diazepam, anti-nausea medication, a drip (to replace lost fluids
and food) and an Oxygen nasal tube in his nostrils. IV board and drip in and he
had a urethra tube for urine collection. His left hand and in Jack’s right hand
he had an IV incase the other one came out accidentally.
7th
March - Day 2
Jack is in and out of sleep, vomiting
but calm; Jack is in pain although it is heavily masked by the continual
morphine. Jack is heavily monitored and
then two nurses come into the room and
say” it is time for log rolling”, this
is very painful and Jack begs Mummy not to let them do it to him. Jack stiffens in anticipation of the pain to
come. Two pushes of Morphine before the
log rolling happens. This is the hardest part as I can feel and see his pain
when they attempt to move Jack. This is necessary so as not to get bed sores or
any pressure spots. It is the evening
now and Granny sleeps in the chair all night holding on to Jacks hand as his
grip won't let her go. He is so brave
and doesn't cry although tears trickle out the sides of his eyes. Jacks feet respond and his right foot comes
up nicely [flexes}. Jack’s mouth is dry and he has that smell of lots of drugs
so we try icy poles and there are showers of vomit everywhere. I think the
secret is a little bit at a time, he was enjoying it so much we kept giving it
to him. He is quite alert and TV goes on and he spends a lot of time
awake. The hospital team assembles
quickly by Jacks bed side - the room decorator "fun police", physio
team, pain team, surgeons, bladder specialist, nurses, Granny and us. Jack is continually monitored for oxygen
levels and heart rate. Jack wants to poo and the nurse says” just do it in the
bed or nappy”, Jack says no way and starts to cry. Nurse brings the pan, but that looks impossible
with spinal surgery and the idea goes, we shall see what tomorrow holds.
8th
March - Day 3
The team assembles, decisions are made
and Jack begins physio. His legs are
cushioned in splints so as not to flex his legs. He can open and shut his legs, flexing of
feet and raising of knees. The team
comes to do a log roll and Jack once again begs me not to do it and is scared.
We discover hand signals and using the word “turn” is better, this time he is
made comfortable in a side log position wedged between six pillows and happily
watching Power Rangers. About 20 minutes late Jack writhes in pain and vomits.
Granny again sleeps in the chair to monitor Jack closely as he is hallucinating
as well.
9th
March - Day 4
The team is very pleased with Jacks
progress; they say he is doing exceedingly well. The routine physio begins today; blowing
bubbles to stimulate the lungs due to the pressure build up from continual
lying on his back. He is very
constipated from the Morphine. Today
Jack has had two kiwi fruit and juice and not been sick, so a diet will begin
slowly. Much more lucid today and can
lie on his side for two hours at a time. Still vomits but has kept his food
down throughout the day. Jack is doing strong starfish legs and lifting his
knees nicely in his bed.
10th
March - Day 5
The catheter came out today, really
painful and he cries, drugs and IV fluids come out too. Jack doesn't seem to have pain so I suggest
we don’t give him any pain relief unless necessary, it is suggested to me we
keep some pain relief up so he doesn’t come crashing down in pain. I decided he
has had enough drugs in his system so we just let him have one dose of Panadol
and he has no problems so he is completely drug free now they say it is 48
hours until the drugs leave his system completely. He has healed quickly and they ask if we have
fast healing powers in out tribe and we do and Jack obviously has a high pain
threshold too. Doctors change the
bandage on his spine and we see the wound for the first time, 20cms, clean and
neat but longer than we expected.
Vomited all that he has been given and this has been distressing. However his body is moving freely and he
turns easily (log rolling). Had a banana
and chicken schnitzel and part of a gingerbread man. All good. I think there is something in the
ginger!
11th
March - Day 6 (weekend, all stops)
This morning Jack vomits again Bed
baths are frustrating by now; he consistently ate small amounts all day. Jack is back to being himself, no sleep, very
active considering he is still flat on his back. Jack can star fish his legs in and out by
himself with his leg wraps on (using stomach muscles and exerting
himself). AFO's on for four hours today,
bed is inclined and AFO's are on stretching his feet and Jack is rolling
himself from side to side, his body is moving freely. Jack is doing fine hand skills and toes are
not curling as they did when he had the spasticity.
12th
March - Day 7
Doctors visit daily and are so
surprised, to see a child bounce back as quickly as Jack has. He is completely pain free and when stretched
by the doctors has no aggravation in the body anywhere. All good news, but I still have a sick
feeling in the pit of my stomach, "have too many nerves been cut, will he
be too weak to eventually stand and walk".
Time will tell, this is the hardest part.
13th
March - Day 8
Physically Jacks strength is increasing
each day and the team at the children’s hospital at Westmead are in ore of the
progress he has made and so am I. With
such a long incision He is rolling,
side sitting and isolating individual muscle groups.
14th
March - Day 9
Serial casting today Jack has both feet
in plaster with a 90 degree stretch and must wear his leg wraps to keep the
muscles long to maximize the stretch.
Drugs have to be administered tonight as the pain is intense. Today’s physio was intense and he did really
will in the morning, but the afternoon Jack put up a fight for 30 minutes
refusing to comply. Eventually we got there through tiredness and tears.
26
March 3 weeks post operation
Jack has made steady progress everyday
and with each session of physiotherapy he is getting stronger. Today Jack
walked on the treadmill supported around the waist and has begun hydrotherapy.
I must say I am shocked to see Jack so physically weak when he takes a few
steps he collapses under his weight. This is normal as he now needs to develop
and strengthen other muscles and get them working. Despite this we are all
really proud of his ability and the way he pushes himself daily. However this
does require plenty of chocolate bribes and promises of visiting the Starlight
room. When Jack sits on my hips his legs move around freely where as before I
would feel them fighting my body with the strength of the spasticity. He has not complained about being in hospital
or asked to go home. He is amazing. This weekend he has leave to go home and we
can’t wait. Jane valentine spoke to me today and reminded me of the decision we
as a family had made for Jack. This was elective surgery on the spinal cord and
it was a big decision to make. Everyday I see improvement it is a step closer
to Jack being able to be the best he can be. Today my friends Cathie slept the
night and following night in his room and Carlie spent the day doing his
physio. I can’t thank my family and friends enough for their support. It is
truly overwhelming. Jack has received so many cards of well wishes, phone calls
from friends, his school mates and the community not to mention presents he can
forget his birthday! A big Thank you to all of you, as it is you that have
lightened the load and made Jack and our journey so much easier and tolerable.
The
Day’s xxxx
Today is the 28th March, Jack, Izabella and myself had a lovely
surprise visit from two fabulous Eagles players and they spent a lot of time
chatting to us in Jack’s room, signing their 2007 Eagles posters and Stickers
for us and friends. The very kind and genuine Mark Nicoski and Steven
Armstrong, we thank them for their visit and look forward to watching the first
game of the season as a family this weekend. 
A Big thank you goes to Mrs. Mc
Whirters Pre Primary class for their amazing self portraits and Giant card that
keeps Jack smiling. Xxxx
22/3/2007
As
Jack is the first child in WA to have a Selective Dorsal Rhizotomy I have given
graphic detail to the days post operation for the parents in the future that
will contemplate this procedure.
It
is tough being away from loved ones and family.
The community support has helped my family through a frightening and
difficult time.
The
operation involves cutting through Jacks spinous processes, the spinal bone is
cut to allow access to the spinal cord and the nerves that extend from there.
Now
I know why the criteria for SDR is so critical to success of the operation.
Motivated Parents - because it is a traumatic time, no sleep, continual worry
and then having to make demands of your child and sometimes you have to be
cruel to be kind.
Highly Intelligent Child - you are asking your child to begin again, to learn to
roll, crawl, sit, stand and then to step
slowly (this takes months), and then finally, to walk the correct way without
spacisity and without toe walking. Suprisingly!
Jack has never questioned his limitations post-op.
Fit, strong, muscular child - they need the underlying strength and power of muscles to
get through all the physio therapy.
Jack
tries so hard in his sessions that he grits his teeth, scrunches his face and
he accomplishes the tasks. There are bad times too, when he cries and refuses
to do it, but you need him to so you persevere, give food rewards and join in
doing the physio along side him.
Throughout
this whole process we have spoken honestly and truthfully to Jack, we have not
hidden anything from him. We have let him know how hard it will be and what is
expected of him along the way. When the nurses tear off the bandages from his
hands, feet and back and this is painful we say “yes it will sting a bit” Tell them everything but most importantly remember some things that
need to be discussed on behalf of your child are better done away from listening
and sometimes manipulative ears {Jack}.
So leave the room and sort out the necessary solutions to the problems.
Every
child is different and they have varying pain thresholds. The Pediatric Rehabilitation staff here in at
the Children’s Hospital at Westmead have said the other three children that
have had this operation have suffered pain for weeks and have been on drugs for
two weeks or more. As well as needing to
have pain killers prior to each physiotherapy session. The children also
couldn't bare to be stretched and their feet were extremely sensitive. Fortunately for us Jack has heeled quickly
and with no pain. We are assuming he must have a high pain thresh hold, we are
very proud of Jack and his speedy progress. The hard road to recovery is yet to
come.
I
have only been back in Perth 6 hours and I have an empty feeling knowing I
won’t see these wonderful people that I share a common bond with for some time
to come. Jenny called me from her home tonight to see if we arrived safely,
this is the hospitality we as a family were treated to from such caring,
dedicated, passionate people who took the greatest care and interest in our
precious son. We can’t thank them enough for helping Jack to be the best he
can. We have built a great relationship with this amazing team and are hoping
in a year Jack will be able to walk into the hospital and show them how amazing
they are.
With
great respect and admiration we would like to thank
The
Physical disability service of the Rehabilitation Dept. of Neurosurgery at the
children’s Hospital at Westmead.
Dr Adam Scheinberg
Jenny Lewis
Dr Chaseling
Suzie
Kylie Aroyan
Therese “The Fun Police”
And extra thanks to Mary Beth Dunn for
saying “YES”
Cora
Day
15/3/2007
Well its been nearly a week since I
last wrote and so much has happened. Jack is doing amazingly well. The doctors
have said he has recovered faster than the previous 3 patients. He is moving
really well but is getting a little tired of all the therapy. His back is
healing well also
as
you can see from the photo. I include this photo so as not to pull any punches
for those parents considering this operation. It is something that needs to be
considered. We continue to be humbled by all the support, well wishes and
prayers. Thank you all. Jack will be back in Perth on Tuesday the 20th.
He will go straight from the airport to PMH for at least the next 3 weeks.
9/3/2007
Wow, I got back late last night and it
has just been incredible. I should start out by saying Jack is doing really
well after his operation on Monday. He is looking and sounding more like
himself everyday, and has just starting eating some solids today. The operation
itself went to plan and there were no complications. Cora and her Mum will stay
with Jack in Sydney until he is ready to come home which should be around the
23rd of March.
Jack has started his daily Physio which
will help him to become better than before. We took a lot of inspiration away
from the encounter we had with Darcy and his parents. Darcy was the first child
in Australia to have the SDR 2 years ago, Jack is the forth. Darcy is now
running, jumping, and climbing. These are things we dare to dream about for
Jack.
I will write some more soon about our
trip to Sydney, but in the mean while I have attached some information about
Jacks operation that I think should clear up some questions about what an SDR
actually is.
The below image gives an idea of how the operation is
performed.
Selective dorsal rhizotomy describes a surgical
procedure carried out to the lower area of the back. Sensory nerve fibers in
the spinal cord are identified then selectively cut. The sensory nerve roots
are first of all separated from the motor ones. Identification of the nerve
fibers to be cut is then made by means of electrical stimulation those which
generate unusual electrical activity are considered to be those which
contribute to producing too much muscle tone, and are cut. The remaining routes
carrying the correct messages remain intact
27/2/2007
We leave for Sydney tomorrow. It seems
like we have travelled so far to this point, but we still have a long way to
go. Cora and I are very nervous. I will update the site when I return in just
over a week.
23/2/2007
Jack was three when we approached our
Pediatrician and asked about the latest treatments for spasticity in children.
SDR was mentioned but it was a new treatment to Australia and The American team
at Gillette were training a Sydney Doctor to perform the Rhyzotomy. Immediately
I went home and researched SDR on the net and came to the conclusion this was
the only thing at present that would help Jack’s legs grow without deformities
and pain and give him as close to a normal independent life as possible. With
the opportunity to walk, run and jump. I let the Perth doctors know how serious
I was and pushed hard to get Jack to Sydney to have an evaluation for SDR.
Jeremy, Jack and I flew over and I begged them for the surgery and told them
that I knew this was for jack and that he had to have the SDR no matter what
the cost. I was soon whipped into line and told begging won’t work, he has to
match the criteria end of story. Leaving Sydney we were sure they said yes but
it wasn’t a confident “yes”
In preparation for this and desperate
to see Jack begin walking we had busy weekly schedules, my belief has always
been hard work pays off and Jack grew in strength and in height rapidly.
Conductive-ed, Horse Riding, Swimming, Bike riding, private Physiotherapy,
hydrotherapy, acupuncture massage, nightly massages and stretching when we had
an opportunity helped him to develop strong muscles. Jack took his first steps the Christmas of
2006 at age 3.
Testing for the SDR has been extreme.
Jack has had to endure test after test and he has surprised us at how amazing
he has been through this with minimal complaints which have gained us the
required results. As a parent heading down the tunnel of SDR be prepared for a
long hard road with many stages.
More hard work was to come and having a
family with needs it became a precarious juggling act tending to Izabella’s
needs and our lives in general. Much champagne was consumed and many tears were
shared with friends and family through these very tough times.
It is now a year and a half later and
the countdown for Sydney is {three sleeps}.
Today is Sunday and jack can now swim
in the pool with his fins alone and happily keep up with the rest of his
friends. Jack’s left arm has tone and I have found swimming has been terrific
at making Jack’s arm more mobile.
With heart felt gratitude I must
especially thank PMH, Dr Anna Gubbay, Noula Gibson and Sarah Love, at CPA Julie
Bolton, Jessica Morris, Kaye and Sarah W.
My families love and Jeremy and
Izabella’s support and to my rock, Cathie Pitcher without her I couldn’t have
come this far.
I spoke before of cost well the cost is
sleepless nights, many tears of strain and living with decisions you have to
make on behalf of your child and believe they are well informed and the right
ones to make.
We are told Jack is to be admitted and
operated on the 5th March 2007 and sedated for 3-4 days after due to
the movement throughout the surgery to the spinal cord. I expect the hardest
work is yet to come!
As Jack will be the first Western
Australian child to undergo this surgery I have been communicating with
families in America as to the results they have seen in their children, one
letter is to follow that gave me much hope for our dear little boy, as well as
the channel 7’s interview with Jack and myself on the 21/2/2007.