A lot of people have wondered what Antonio does all day
long.
Over the years we have had to
brain storm a lot to find things he can do to keep himself entertained, get an
education, have things he can do for himself, to make him feel like he can make
choices and have some control over what he wants to do.
Antonio was born as a 23 week preemie and one of the things
that happened at that time was a lack of oxygen and also several brain bleeds. He has hydrocephalus and a shunt in his head
to drain off the extra brain fluid. It
empties into his stomach and is called a VP shunt. (if it emptied into his
heart it would be called a VA shunt, he has had that before too) He has many, many diagnosis and health issues but his main diagnosis is spastic
cerebral palsy. He tone is so very tight
he can not easily bend his legs or move his body much. He uses his high tone to speak and has very
little breath control. He speaks a few words in huge
bursts from tightening his whole body up to push out the air required for him
to speak. He has trouble opening and
closing his hands and moving his arms purposefully and fluidly. He has the intellect of about a four
or five year old child.
Even though he has lived his whole life this way, he is one
of the most happy people I have ever met.
One of the most compassionate loving young men I have ever known. I am so happy and blessed to say he is my
son.
With all of his physical challenges he can not do anything
much for himself.
When he was young I
did all his total care myself.
My
husband would maybe help me on the weekends and evenings some.
But as Antonio grew and got so heavy and a challenge
to move his very stiff and twisted body, one person or even two people could
not lift or move him while keeping him safe and comfortable and us
protecting our backs from harm.
His insurance would only pay for one type of lift. We were happy and grateful to get it. But once we got it, we could see it might
have been the only lift that they would pay for but it did not work for his
type of body. The lift that they
provided was called a Hoyer lift. Even
with all the different sling systems, it could not transfer him in a seated
position or get him from laying down or even sitting on his toileting system,
to the wheel chair. The Hoyer was for a
person that could “hold” a seated position while being transferred. It was a difficult lift to use. I had to struggle to get the body sling under him lifting and tugging to get it just right. Antonio would straighten out stiff as a board
and it is very hard to get him bent back into a seated position again. It just kind of cradled him laying out
flat. There was no way for one person to get his laying down, cradled body, so his bottom would line up over his wheel chair so he could be lowed down to sit on it. So with the Hoyer we still had to
do the majority of lifting, bending him and trying to lift him into his chair
even with the lift. We looked and looked
and found a lift called a Solo Lift. It
was almost $5000 dollars. No insurance
would pay for it and we could not afford it. We (Tim, myself and William) all had hurt our backs, over time, by then
trying to care for him all together. We were desperate as we could see we would not be able to care for Antonio
ourselves much longer the way things were.
We would try to save up for the Solo Lift and something would always
come up like a major appliance breaking or the kids needing something major. We could find no grants or funding. We prayed and prayed about it for several
years. We didn't mention it much to anyone.
One day the Lord put it on some
friends of ours hearts to use their tithe money to purchase it for
Antonio! We were so very grateful! God is so good. It made the difference of us
being able to continue to care for him our selves at home. Now we can lift and move him with little
effort on our part. The lift does do all
the work. Instead of a sling that cradles, it has a vest that goes around his ribs under his arms. I can easily put this on him in his wheel chair or set him up in bed and put it on him. It can move him in a seated
position easily and comfortably or bring him to a stand. Praise
God! It hooks from the back like a cat carries her kittens.
We would not be able to care for Antonio our selves at home
with out all his equipment. We use a
toileting/bath system, his wheel chair, our handicap van, his Solo Lift, his
hospital bed, a feeding pump that gives him his fluids at night as he can not
drink. He aspirates on fluids so has to
get all his fluids though his g-tube at night on a drip feed. It kinda looks like an IV pump.
His insurance will no longer provide speech and occupational
therapy as they can not show he is improving from getting this therapy. :(
They will pay for two sessions of Physical Therapy a month. During PT his therapist stretchs him out good and works on a few
things. That is not enough to really
help him. So we pay out of pocket for
him to have a Pediatric Massage therapist come out to the house once a week to
get his muscles stretched and his whole body gone over really well, for an hour at a time. It has made a difference in his joint
comfort.
Antonio is very much like taking care of an older person
really. As he has gotten older his feet
and legs have poor circulation. We have
to watch for skin break down and when he does get a place of break down we usually
have to go to “Wound Clinic” to get treatment to get it to heal. He wears special rubbery like leg protectors
to protect his feet and legs from any scrapes or bumps and break down. He gets inhaler or breathing treatments
though out the day as he has trouble breathing without them. He has immature lungs, asthma and reactive
airway.
He has to be fed as he cannot feed himself. He is incontinent and wears a diaper.
But praise be to God, can get his BM in the potty every morning. Glory to God!
That is a huge help.
He had such severe reflux as a baby/toddler that when they put in
his g-tube they also did a flundaplication (sp?) They wrap his stomach around his esophagus so
he will no longer allow refluxing. But that also
means he can not vomit easily or burp unless there is a tremendous amount of pressure. With
his un-coordination he can’t help that sometimes he swallows air and since he
has the flundo it will build up and he will get very uncomfortable. So often times in the night we will hear him
retching and quickly have to get up and disconnect his g-tube from his drip
feed and vent out the air before he vomits.
We have to do this occasionally in the day too.
Antonio is a whole lot of work.
We all work together to take care of
him.
But if you ask anyone in our home.
He is such a huge blessing in our lives and we
would do anything for that young man.
Anything to brighten his day.
Anything
to bless him.
He appreciates so much,
anything we do for him.
Always says
thank you.
He is a
prayer warrior and
prays for people constantly.
It brings
me to tears often when I hear him praying.
But especially when I hear him petitioning God and I hear it is on my
own behalf.
For my strength, for my
health and for my happiness.
Now, that is humbling.
I would and will do anything I can for that
boy.
I love him dearly.
He asks for very little in life.
But when he does I try to make it happen for
him.
He has his own “office” area in our
home, tailored just to him.
When he was 8
he wanted turtles.
So I did a lot of
research and found some water turtles that never grow very large and got them
for him.
He has had them for 10 years. He still has two of the original fish we got at that time too! They are to the left of his
office table.
He loves to watch
them.
They are always doing something
interesting.
He also, one year, asked for
a hamster.
So I did some research and
found some Robo hamsters that are very hyper and go all the time.
Those are on his desk as well.
He likes watching them.
He also has a parakeet named Larry Boy.
He is always giving me updates as to what his
bird is doing throughout the day.
We can get his bird out
and put it on Antonio's arm and it just stays there on him.
He loves that.
He also saw that I had a play top
(playground) I had made on the top of our parrots cage, so he wanted to do that for
his Parakeet as well.
So he saved his
money and everytime we went to the pet shop he bought a few things and we made
a nice play top, on top of his bird cage for Larry boy.
Yes, that is a hamster wheel zip tied on top
and yes the bird does get in it and run.
So funny!
On his desk is also a TV and DVD player he bought with his
own money.
A V-smile children's
educational video game system.
He loves
to play this and has about every toddler game they make for it.
He has wore out several units of this systems and they don’t
make this anymore.
Every time it dies we
have to go on ebay and try to find a used one someone is selling.
The joystick has a huge nob on the end so he
can easily do his games with little hand control.
He has a CD player with the buttons on the front.
He can actually turn it on and off using his
knuckle on the buttons or find a certain song.
The clock behind the CD player my sister bought for him.
Antonio LOVES hand bell music.
And this clock sounds just like hand bells and
plays many songs.
He loves it.
We have a local hand bell choir that does
concerts we take him to when they have one. He also loves Hymns and The Annie
Moses band.
So he has CD's of those when
he wants to listen to music.
He also has
a collection of DVD’s he likes to watch in his DVD player.
Mostly Franklin, Thomas the tank engine and
Bob the Builder.
We don’t have piped in
TV.
Haven't for years.
But did just get Netflixs for Antonio, just
for the very young toddler kinds of shows for him.
He loves it.
Curious George and Back Yardigins are his favorites.
Antonio has very few ways he can spend his money, as he can't play with toys and such easily. So it accumulates from birthdays and holidays from our family when they give it to him. So he saves his money up for big things he wants. Like his TV or his Ipad he wanted. The Ipad he saved some money up for and my dad put some money with it so he could afford it. He loves it. We bought a cover for it made by Fisher Price that keeps it protected and easier to grip.
So, now that you know a little bit about him, his days go
something like this. If we are not going anywhere that day. :)
He gets up at 7:00 a.m. and using his lift we put him on the
potty to go BM if he can.
I give him a
breathing treatment while he is there.
If he doesn’t go in 30 minutes we push his potty chair into the shower
and using an exfoliation glove scrub him down well to get his circulation going
for the day.
We dry him off and using
the Solo Lift move him to his bed to diaper and dress him.
Then back into the Solo Lift to stand on his
feet for a few minutes.
He loves
standing on his feet for a few moments every day.
He says he is dancing!
Then into his wheel chair for the day.
He is then wheeled out to eat breakfast with the rest of the
children. We all take turns feeding Antonio as it takes him an hour or more to
eat his meals. After breakfast he gets
to choose what he wants to do. He tells
us all day long to change a DVD or CD.
To change out a video game. To
push him over by the turtle tank and lay him back in his wheel chair as he
needs to lay back to rest. OR
to put him over to the Netflix area to watch a movie. Sometimes he wants to participate in the
other kids school work. If they are
reading out loud he wants to listen and be read to. Or if coloring or working on something he
wants to watch or help. Sometimes if I am
baking bread or working in the kitchen he wants to watch me in there and talk a
while. He is busy and included all day
long. He is a happy boy.
He eats lunch with all of us but by supper time he is really
tired and having trouble staying awake. If
he wants to eat supper we let him. But
he usually gags though the whole meal.
As his muscles by this time are tired and he has trouble chewing and
swallowing. So we blend up his supper in
a Kitchen Aid power blender and put it though his G-tube. Even if we tube feed him his supper he still stays out in the kitchen with us while we eat, participating in conversation and just being his silly self.
He wants to get into bed by at least 7 p.m.
sometimes he starts asking earlier but we try to distract him and get him to
make it to 7.
Once in bed he gets
another breathing treatment and hook
him up to his night fluids.
He likes to listen
to the Bible on CD at night.
He also has
baby lullaby tunes attached to his handicap bed rail he can hit the button with
his elbow and start the music when he wants to hear it.
Also he sleeps with a turtle that puts stars
on the ceiling at night.
He can push the
button himself if we set it on his tummy and it will stay on for 45 minutes at
a time.
If I get up in the night because
I hear him talking.
He is usually has the stars on and is praying under them.
He is such a sweet soul.
So that is what Antonio does all day long in a nut
shell.
We often have to go places
though.
About once a week.
So on those days he is out and about with us
going to doctors appointments, therapy appointments, home school bowling (his
favorite!)
Also we go to any enriching plays, puppet shows, library events or other things
I can find to make the children’s education more fun and meaningful.
God has truly blessed us with each and every one of our children. God is so good!
Psalm 139:13-14
For thou hast possessed my reins: thou hast covered me in my mother's womb. I will praise thee; for I am fearfully and wonderfully made: marvellous are thy works; and that my soul knoweth right well.
May the Lord God of Israel be with you as you live and grow in Him.
blessings,
susan
