Birthdays, and Growing Up

The growing up would be this guy, who just swiftly crawled up on the kitchen table this past week. He doesn't even walk most of the time! (He can walk, just thinks it's a bit slow.)

Shekinah thought he was funny...then I looked at the back drop of my lovely children...

Put them down for a nap and cleaned up my kitchen sink.

It's as good as it gets folks.

Then we had a birthday in this house.

He wanted sticky buns "with that good icing on" (he means buttercream with real butter)

I had seen a neat "cake" on Facebook where they used Nut*lla for the spread between the layers

and decided that you probably could do the same thing with the sticky bun recipe...

and you can!

The other thing he wanted was that expensive that he had to combine Christmas and birthday gifts into one....and add a bit of his own (young parents..it is a good idea for them to have to invest something into big ticket items like this)  ---that's your free advice for the day--

and no, he is not allowed to use the wi-fi unless he is supervised....old meanies we are.

I heard familiar music and realized that Faith is playing one of Zeke's old favorite games.

It should help her learn some logic....as long as she doesn't get too much help from the big kids.

Last weekend we visited with the family from OH whose son Tyler had external fixators on both legs. The feedback we got from the children was interesting. Tyler confided in his mom, "mom, that little girl doesn't have many fingers."

Mom: "Are you glad you have your fingers, even if they don't all work properly?"

His mother told me that he had been having quite a problem lately with the idea that he was going to need to be on a wheel chair for some time and was very sure there wasn't a child ANYWHERE as bad off as he was. Then he met my two children and suddenly felt that he didn't have quite as many problems...

THEN:

My children...

Shekinah: "mom that boy , why doesn't he have elbows that bend?"

Me: "Well, that's how God made HIM."

Shekinah: "Well I'm glad God gave me elbows."

A bit of background on this ...Shekinah has been talking about her hands quite a bit lately and wishing she had more fingers...."or hands like yours, mom." She usually comes to the acceptance "God made me this way, right mom?" So to hear her reason this through was interesting.

I mentioned the fixators to Joseph and said, "I looked at those pins and were glad they didn't live in my house. How about you Joseph?"

Joe:" Well his pins weren't as big as mine and they didn't go through the bone like mine, but yeah I'm glad I don't have to do that again."

I realized that the trauma of the ex-fix apparently affected his memory, but we'll let him go.

Have a good week! Rumor has it that the temps might hit the 50's, but as DH said "I'll believe it when I see it."

Five Months

It has taken 5 months to get from this.....

To this.

We started therapy last week, developed a blister on the "new skin" so
we can't do scar massage on that area. Nevertheless, we have a huge area
to work on anyway. I wish I could say we are seeing fast results....I
just read that it will take as many months to "release" a scar with
massage as it took to form the scar. We will be at this a loooong time.
Some of those scars are almost 10 years old!

Plus regaining wrist movement and strength takes determination that  some 11 y.o. boys don't always have....then mama has to have the determination....
You can see the "ulnar deviation" that he still has because of the tight tendons that are inside even after 4 months of stretching in the fixator.

Progress!

On Friday, my parents, Joseph and I journeyed to Phila to get fitted for
the new legs!! and to get rid of that wonderful but hated fixator!
Unfortunately we will not have the new legs by big brothers wedding day,
but they will be coming!
Thankfully the removal of the fixator went as planned and we didn't need
to stay overnight or some other unwelcome surprise.
Actually I guess there was one unwelcome surprise...the cast....should
have figured that was a possibility, but I didn't and he woke with it on
his arm and was not a happy camper....when he heard that it would be 4
weeks...he really was not pleased!
One day soon we need to write a book about this summer, it has been
quite the adventure.

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.

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.

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....

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.

Still Waiting

God is working on my patience department...when they tell you it will be at least 2 hrs....we are now past  hour #3. They said they are wrapping things up.
I am very anxious to see what they decided to use. They were still confering this AM as to the best way to attach the fixtor and how much release they can do today.
Exciting and scary stuff.