Well this page actually changed a little as it was created. This provides information on the therapies that Jeremy takes as well as points out some of the major expenses incurred on top of Holly having to quit working to take care of Jeremy full-time. As you read below you'll see that Jeremy works harder than most average people do.
Gas:
Everyone is impacted by the rising cost of gas but the amount of
driving our handicapped full size van to get Jeremy to the
number of therapies adds an additional expense. During the
time Jeremy receives Suit and Hyperbaric therapy we spent
an additional $100 in gas per week
because they are located by the airport.
Van Maintenance:
The van has over 170,000 miles and has frequent issues.
The used lift that was installed continues to breakdown. Unfortunately it
usually happens when Jeremy is in the van. 3 times I've been called from
work to come pull Jeremy out over the back seat to get him out of the van and
take it to the shop.
Handicapped access:
It's amazing how much stuff costs. The wood, paint, safety
tape, etc to build ramps up to the door were not cheap. They've had to be
redone a couple of times due to weathering. Now that Jeremy has an
electrical chair the ramp needs to be redone LONGER so the grade is less.
Physical therapy:
Focuses mainly on gross motor skills – balance, rolling,
standing, sitting. Stretching and strengthening are important
to help improve the function of muscles. The goal is to improve
strength, increase endurance, and maintain or improve range of
motion. At first he was unable to assist at all in this
treatment so the therapist had to do all the work and Jeremy
would tire very easily, even though he wasn’t able to really
work at all.
Occupational therapy:
Assists people in developing the "skills for the job of
living" necessary for independent and satisfying lives. Services
typically include customized treatment programs to improve one's
ability to perform daily activities, comprehensive home and job
site evaluations with adaptation recommendations and usage
training, and performance assessments and treatment. Focuses
mainly on fine motor skills – finger and arm control, eye
control, and multitasking. It assists in developing “skills for
the job of living” which aids in becoming independent. Again,
at first he was unable to assist at all and now is able to
communicate by activating a switch with his finger to use a
special computer.
Speech therapy:
In spite of how it sounds, this therapy has been less to
regain speech and has focused on the most basic skills of just
opening and closing his mouth and moving his tongue to hopefully
be able to eat again. When he began this therapy, his jaw was
totally locked up and unable to open at all. Now he is able to
taste some soft foods. Some work has been done on making
certain sounds and he continues to make slow progress in this
area.
Botox:
Used reduce muscle spasms and pain. After a brain injury,
it cannot function correctly to tell muscles when to contract
and relax. Many times the muscles fire and cannot shut
themselves off. The result is constant muscle spasms similar to
charlie horse-type pains, but it is constant and is also called
“tone”. They can affect every muscle that controls movement in
the eyes, neck, face, back, legs, toes, fingers, etc. The goal
of the therapy is to reduce muscle spasm and pain by paralyzing
the spastic muscle. The botox is injected into various spots
throughout the body every 3-4 months, as this is a short-acting
treatment.
Baclofen:
Also decreases the tone, as mentioned above. However, this
is a pump that has been implanted in his body with a catheter
delivering a constant dose of the medication directly into his
spinal fluid. The dosage can be increased and decreased through
the use of a special computer they have in the rehab clinic and
the pump must be refilled every 2-3 months by using this
computer. However, this treatment has caused an unfortunate
side effect of rapid development and progression of scoliosis of
his spine.
Pool therapy:
A type of physical therapy done in a pool that helps
increase flexibility by eliminating the effects of gravity on
the body. Lots of the same types of exercises are done in the
pool as on land but they take less effort in the water. Some
exercises that cannot be done on land can be done in the water
since the therapist can maneuver his body in many more ways due
to his buoyancy in the water.
Chiropractic therapy:
Helps the body heal itself by correcting dislocations of the
vertebrae of the spine by using twisting, pulling or pushing
movements, heat, electrical or ultrasound stimulation, and
massage techniques.
Dynavox:
A special computer set up specifically for communication for
those who are unable to speak. These can be used with a variety
of switches or input devices. Jeremy uses a switch that he
presses with his finger to select a specific letter or phrase,
then when he finishes a sentence he can make it speak the
sentence out loud.
E-stim therapy:
Uses an electrical current to cause a single muscle or a
group of muscles to contract. By placing electrodes on the skin
in various locations and contracting the muscle helps strengthen
the affected muscle. The intensity of the current setting can be
adjusted to cause a forceful or gentle muscle contraction. Along
with increasing muscle strength, the contraction of the muscle
also promotes blood supply to the area that assists in healing.
Jeremy uses this on his arms to stimulate opening of his
fingers.
Hyperbaric oxygen therapy:
Delivers pure oxygen in a pressurized chamber which forces
the oxygen into damaged areas to promote growth of new blood
vessels. This had previously been used as treatment for carbon
monoxide poisoning and wound healing. It has been proven to
help with neurological conditions but, of course, insurance
companies have not approved it for this use, and they use the
“it’s experimental” argument to avoid paying for it.
“Suit” physical therapy:
Only partially covered by insurance.
Uses a special suit and a system of pulleys, weights, and
bands which are all connected to each other and helps align the
body and provide resistance for strengthening and
flexibility. He gets blocks of 2 to 2 ½ hours of therapy each
visit instead of the normal 50 minutes of physical therapy.
This especially helps Jeremy since he has such a significant
motor delay, he would just be getting going and it would be time
to quit. They also offer periodic 3 week sessions of 5 days a
week therapy as a kind of kick-start.
Umbilical
cord stem cell treatment: $10,000+
and not covered at all.
Using non-fetal, non-embryonic stem cells taken from the
umbilical cords of healthy babies born to healthy mothers. Over
5,000 cord blood transfusions, frequently in children with
leukemia, have been successfully performed throughout the world
with little or no side effects since 1988. Though the US has
begun to let cancer patients receive this type of treatment,
they have not yet expanded this usage to include neurological
conditions, so to get this same treatment for a brain-injured
patient we have had to go to Mexico. There are several ways
that cord stem cells promote the growth of new brain tissue.
Cord stem cells produce and stimulate the release of growth
factors. Stem cells have been observed to fuse with established
neurons as well as differentiate into neurons, Remember, these
are the same cells used in the US currently with the same
preparation phases used in the US and the cells we actually
brought with us over the border just to get the transfusion.
The time for the entire transfer took less than half the time it
took us in line to get back across the Mexican/US border.
ABR therapy:
$8000+$1500 reevaluate and not covered at all.
ABR’s hands-on technique gives the caregiver the set of tools
that allow you to transform your child’s body. These tools
demonstrate that there is, by far, a greater potential for
improvement for “fixed” structural problems such as rib cage
deformities, scoliosis, and twists of arms and legs. We are
hoping that this interventional therapy will help improve
Jeremy’s aggressive scoliosis and show improvement in the degree
of curvature in his spine. The only other option at this point
is surgically inserting rods into his spine and we want to
exhaust every other option before going with the surgical
option. This treatment will be taught to the caregivers and
must be done daily for 2-3 hours with follow up in the clinic
every 4 months. Jeremy is now signed up to go through his
week-long training at the end of July. The closest training
center is in Montreal, Quebec, Canada.