Progress!

Today we did a run to Philadelphia...to see the Doctors....not sure how
many we saw today...but anyway first the good news. The fixator will be
history in about 2-3 weeks....well as soon as the appointment can get
squeezed in there. Oh and the plastic surgeon said he does not think we
need to graft YAAY!
This-a mama is ready to get rid of that thing...there might be a
certain 11 y.o. boy that thinks the same thing.
The other half of the visit was good, but we aren't quite as far along
as I'd hoped....the incision looks great...the swelling is down...but
not quite far enough...the prothesist (the people that make the
prosthesis) was just not sure that his swelling was down as good as it
could be and rather than make legs that are too big...we are wearing
compression socks/tubes for about 2 weeks then see how he looks.
The let down came this evening...we were talking about touching his legs
and getting them ready for legs...the skin can't be too sensitive and he
was groaning and moaning...didn't want to wear the compression socks to
bed ( I can understand) He also decided that he could not walk today
because his calf muscle was "hurting" the proper adjective never did get
decided upon. Was it achey because he walked too much yesterday
(probable)...or was the muscle torn from the tendon (not
likely)....really could not get a finger on exactly what was going
on...but it was BAD!
Anyway, daddy had a little chat about trying not to let pain rule you
and helping us figure out how to help him....
along the way I asked if he ever had someone that pushed him to move
ahead to work hard at a goal...
"yes a teacher (ayi) in the orphanage"
I asked him what he thinks she would say if today she could see the
choices ahead of him....
on one side...don't try...keep crawling...stay in wheelchair...because
it hurts to work
OR
work with mom and dad and doctors...do the exercises...toughen the
skin....move the muscles so that he can play basketball with his
brother...walk and run with his classmates.
That upset him...I do it a lot these days....
but he got me back he said...
"that is why I didn't want to come to America...all the surgeries"
I bit my tongue for awhile...then asked him who the kid was that crawled
by me the other day and lifted his fixator arm and said..."even though
this was hard, I would tell other kids it was worth it."
"Not me" was his answer.

What Kind of Wood!?

Last night it was Joseph's turn to pick a book for bedtime reading. He
picked Genesis 6 KJV...I decided whatever! see if he understands.
So I read it with great expression (it's the beginning of the story of
Noah) After I finished I asked Joseph what happened in the story..."I
don't know"
So I read it again....stopping every few verses to ask
questions....after one of the verses I asked Faith..."What kind of wood
did Noah use to build the ark?" (It's gopher wood in KJV, not exactly
sure what kind of tree that was)

Faith's answer...."Ummm...chipmunk?"

Very close....

Amazing Sights II

The reason we took a wheel chair ride to the end of the drive....
Ezekiel came in and told us about an amazing spider web.... it was at
least 12 feet off the ground and was suspended between two trees that
are about 15 ft apart. If you zoom in on the one picture you can see
the black spider surrounded by unfortunate bugs that were snagged way up
there.

The other spider was busy making another web close to the first...I hope
we have a bit of dew tomorrow before Irene hits. I want a better picture

Amazing Sights

The first one was this... It took him a few tries to get to the end of
the walk...then we took a wheelchair ride to the end of the drive. On
the way back he stopped for the walker and made it from the drive the
whole way into the house and to the sofa....something tells me that he
will be tired/ achey tomorrow.

First Day of School 2011

Yesterday 2 out of 5 kids were coming down with colds...this morning 3
out of 5. Mr Joseph was up at least 3 times last night and the times he
came to wake me, HE was wide awake.
Wonder how much he actually slept. He told us that when he was with his
foster family, he would wake at 4:30 AM and go over to his friends house
and wake him so they could get ready for school. He would then eat
breakfast at their house. I asked if friend's parents minded if he
showed up at that hour...."sometimes his mama didn't like it, but his
daddy was away a lot"
I left him know that 4:30 AM is not the time to wake up at this house.
They were a bunch of tired kids tonite.

The New Shoes

Play Area

This summer the girls played and played with the strangest assortment of
toys.
The barn...devoid of animals
The little cars
The chairs are part of a stacking game
The animals were given as part of a learning tool
The J*nga blocks are used in different variations
The dominoes...somedays they are a road, the next day risers for the
bears to stand on to rehearse the Christmas program...the next they are
desks for the bears.
The wooden blocks get arranged as a stage.
The barn is a parking garage.
The whole room is a mess, but we left it there sometimes 2 weeks in a row.
Finally today I told them the floor must be cleaned up because.........
(wait for it.....)
SCHOOL STARTS TOMORROW!!!!!
I'm as excited as they are. But I better be the first one up...my alarm
is set for 5AM...there are extra steps this year
pin care...wrap the legs...cart the wheel chair....and I'm sure he will
want to take his new walker....but I think he should practice a bit more
with it...using a walker one handed takes a bit of practice. Oh and you
should see his new crocs...daddy cut an old pair down to cushion the
walking surface and since they were sisters old ones...they are sporting
a fine new coat of blue paint.
--
Chris
http://shallrunandnotbeweary.blogspot.com/

The Pictures Speak for Themselves

True happiness is being able to stand up by yourself...well not
really, but you get the idea.
The casts came off on Monday...now he wants to walk
--
Chris
http://shallrunandnotbeweary.blogspot.com/

Safety or Bling?

In the interest of keeping all eyes safe, we added some pieces to
Joseph's new rods on his fixator.

Casts are OFF!

We made the trip to Philly today. Tomorrow marks 3 weeks from his
amputation surgery. They took off the casts with a minimum of fuss.
Thanks to Ezekiel who found a Mr P*tato head and was very entertaining.
After they removed the gauze he fearfully took a look and then "Cool!"
He was very pleased with the results as were his doctors. He was
expecting lots of blood and pain as they took off the bandages (the arm
was worse)
The doctor decided that the stitches look good enough to keep the casts
off....may start putting weight on them...and best of all
He had a shower tonite and could get all of him wet AT THE SAME TIME!
It has been awhile.
They added extensions to his fixator...now he is actually armed and
dangerous...gotta get pictures of that!
Then to top off the good feelings of tonite, he proceeded to scratch his
knee "it ITCHES!!!" and did not want me to put on lotion to soothe the
itch. Almost had a perfectly good day!
Ah well, we will try again tomorrow.

What I Learned These Last Two Weeks

I've been a mom for 20 years. I thought I'd learned pretty much about
taking care of children. Then God pulled out all the stops and gave us
Joseph. (I know our situation is minor compared to some, but I'm writing
this to help me remember and just in case someone else needs this info)
When we knew that he would most probably need to have his feet
amputated, we figured we would do the "big" surgery first and then maybe
a year later we would work on the hand. It made sense...get him
properly mobile then work on the "non-essential" limb (don't take that
wrong...it's just much easier to do without an arm than to be
non-weightbearing)
But, when we had a consultation with all involved doctors they suggested
the fixator on his arm first so we could determine the skin deficit and
possibly use the 'extra' skin on his feet for grafting on his arm. At
the time of the visit, we had 'plenty' of time to get the wrist into
position and hopefully remove the fixator at the time of the leg surgery.
Unfortunately, his arm just was not ready for grafting, his wrist wasn't
quite straight and we ended up with an 11 year old 80 pound boy that
had only one usable limb! and only 2 of them could get wet.
Now how do you move this child around? baths? bathroom? moving him from
chair to chair to bed?
This is what I learned: maybe it is written somewhere, but I wish I
would have had these hints earlier
When you are moving a child from bed to chair- bring them as close to
your body as possible. At first the nurse at the hospital told hubby to
lift him from the side...arm under legs and other around back...we soon
realized that will give us both bad backs within a day. A better
way--face him, squat, have him throw his good arm around your shoulders
and hold on....you grasp either a good handful of jeans-seat or upper
leg and lift. Basically holding him the same as you would a small
child belly to belly.
How to wash him--since it is summer time...I sit him outside, have him
slouch down in the wheel chair and tip his head back to wash his hair.
Use a plastic water pitcher to pour water over his head to wash off the
shampoo.
Use a washcloth to wash shirt area....
Send him to the bathroom to wash the private areas while sitting on the
open toilet. Those pre-moistened washcloths do a decent job in a pinch.
While we are in the bathroom....there is a right and a wrong way for
guys to use those urine bottles...take a look before you end up with a mess.
Dressing in a wheel chair is a challenge...now that he can slide over to
the sofa it is better, but at first he was afraid to do it on his
own....If he can get his legs in the pants...stand behind the wheelchair
and start pulling, and have him lean from one side to the other allowing
you to pull the pants up a bit at a time...undies work ok that way too.
If you have a choice, ask the doctors to put casts on just to the knees.
Even though I read some of your responses to him about love....he still
says he does not know what love is :^) and the other day he told me he
is having the worst summer ever....while I understand....
He does appreciate the many Hess trucks (another post one day- Wendy)
He is having fun with all the gifts people are sending
And he did admit to me the other day that this isn't as bad as he feared
it would be.
I do know that we are becoming the "king of things", but as you all know
eventually your 'things' become a burden and they turn on you....

Battling Varmints

After searching in vain for ripe little yellow tomatoes and only finding
green ones. Then looking to my traditional vines and only finding this

I asked hubby to set the rat traps and I bought these.

Mama, What Is Love?

This picture should have been on the previous post...

This wheelchair improves communication. We have been having some
interesting conversations the last few days. Some confession time of
sins committed before we ever knew him. Nothing that shocks me, but I am
glad that the incidents bothered him enough to talk to me about it.
Then the zinger---"Mama, what is love?
"Umm, what do you mean?"
"How big is love? You love....(he lists everyone in the family
including himself)...how big is love?"
OK people how do you answer that one?
I muddled my way through without ruining the baked oatmeal and the bread
I was making. A keeping Faith from stirring my mixture to the floor.
I tried to give the ultimate example about God giving His Son when we
didn't deserve it and how God did not give us what we deserved...Hope
pointed out that, that is Mercy, not love...but
I explained that while daddy works very hard all day, he loves his
family enough to come home each night and mow the lawn, keep the
swimming pool clean, play catch. I told him that some daddy's don't
love their families enough to do that. Daddy could very well stop
somewhere with friends and drink beer and not come home to the work that
is US...That, my son, is Love...there was more...
Anyway....I did ask what he thinks love is and did he ever feel
it....his answer was "no"
Looks like we have our work cut out for us.

One week post-surgery

Tonite he sleeps upstairs! He proved today that he can crawl up the
steps and get into his bed on his own...he has even managed to get a
leg-up over the toilet and he is sure he is able to take care of
necessities if needed.
I'm not sure how we are going to keep him non-weightbearing for 4
weeks. He did comment this evening that his feet ummm legs are
tired/hurt. So I think in true Joseph fashion we over-did it right away.

Another Driver!

The long awaited 16th birthday arrived and of course the DMV is closed
on a Monday in our area.
We braved a very long line at 8:30 AM to take the permit test for our
state on Tues. He passed with 100% ....now we parents have to take him
driving Yaay! I told the girls that by the time I teach them to drive I
will have no hair left....gray or black.
Joseph thought "It's fun when Ben drives" A couple of the curves were
a bit more exciting than when I drive.
He is still working on the car. It was his great grandfather's car,
bought for $100 at a family auction...so let's not fuss about the
wheels OK?

Life in These Parts

That wheelchair is getting many miles on it and not from the patient!
Thank goodness for big brothers and little sisters that play games.
Grandma sent a "flower" arrangement.
Tonite we had the first episode of phantom toe pain "felt like an ant
crawling on my toe and I tried to move it and my leg "popped "
First tears in days, gotta start somewhere, he has been so easy-going
ever since the surgery....well, except for when the nurses flushed the
IV site...that requires open mouthed wails...
anyway- the easy going-ness is a bit unusual....maybe it is relief.