Sunday, January 30, 2011

Sunday Morning January 30th 2011

Busy week! Josh had a great week in therapy. He is opening
his mouth to take a spoon repeatedly. He chewed and swallowed
several ice chips. He is close to saying a word. He also managed
to extricate himself from his therapy arm splints when nobody was looking
and remove several IV lines from both arms.
They are calling him Houdini.

He got a new wheelchair that fits his frame much better. This is
important as he needs to tolerate more and more time in the
chair, out of bed. Friday he moved to a double room with a roommate.

Unfortunately, Josh was readmitted to Paoli Hospital early Saturday
morning with a high fever and low blood pressure. His BP recovered
quickly but his fever has lingered. CT scans, Ultrasound, and
cultures of every possible source of infection have all turned
up negative. So we think he maybe just has a virus. We will know
more today. If anything new develops, I will add to the post.

On a more positive note, we were able to revisit with some of Josh's
doctors and nurses from his original ICU stay, and the level of care
at Paoli is excellent. However, it was tough to go back there.

Thanks to everyone who is following or helping in any way.

With Love,
The Bonjos

Wednesday, January 26, 2011

Wednesday, January 26, 2011

Hello Dear Friends,

On this gray and snowy day, we are so pleased to share the great news that Bryn Mawr Rehab has extended Josh's stay there! This is with or without our insurance company's participation...

The decision was made because of both Josh's positive progress and the ongoing medical issues around his tone and a few other mild problems that still warrant in-treatment monitoring.

His therapists are pleased with his progress in all areas, wakefulness, alertness, and attention, sound-making in response to questions or conversationally. He is working hard to rally his coordination on his left side to accomplish tasks for himself and to follow the commands his therapists are giving him.

Mike was able to observe and participate in Josh's therapy on Tuesday. This gave him a chance to hear all the positive feedback from both the therapists and nurses.

Josh's frustration continues to drive him to make more noise in hopes of communicating his needs or to work more doggedly at alerting us to his discomfort. Josh's wonderful array of nurses continue to be a source of hope and reassurance.
They are always enthusiastic and encouraging to Josh and to us, his family.

As always, thank you for reading this and for all the positive energy and prayers we feel sent to us everyday. We are strengthened knowing you are sharing our happiness today.

The Bonjos

Friday, January 21, 2011

Sunday Jan. 24, 2011

Sunday,Jan. 24, 2011

This week has been full of emotion for all of us.

Josh's frustration and willpower grows daily leading to lots of exhaustive efforts to do the small things he so desperately seems to want to do. Many of his actions seem to focus on his right arm and hand that so far have shown very little independent movement. He reaches across with his active left hand to pinch and pull on his right fingers, he laboriously transferred a small foam ball from hand to hand several times. He often holds his right arm up in front of him and stares at it, willing it to respond. These actions take immense focus and energy. He will often close his eyes and rest for a few moments before resuming this effort before he has even re-opened his eyes.

Josh is vocalizing more and more, with a wider range of sounds and volume every day.
His efforts to speak are thrilling and agonizing. We feel that first word will bring many aspects of his struggle together into a coherent cascade of recovery.

He is still suffering from stress related tone, a rigidity that at times keeps him from being able to respond in therapy the way he must want to. But the efforts to follow his therapists requests often challenge his abilities so profoundly that he ends up rigid. Everyone here is gentle and loving to him, trying to help him relax and calm down in these moments. Sometimes he can relax and try again, sometimes he cannot. Some shifting in his medication may help with some of this spasticity and will be started this weekend.

The new clearer awareness in his eyes, the possible efforts to say MOM in the last few days, the extreme sense that he wants to communicate at all costs, gives us tremendous hope. But watching him struggle is at times heartbreaking.

Please pray for relaxation and peace, as well as the blessing of effective communication from both sides of the hospital bed.

With all our love,

The Bonjos

Friday January 21st, 2011

Josh had a great day yesterday! His accomplishments
in therapy included:

:Kicking a ball in PT with each foot

:Touching his nose on command

:Opening his mouth and biting a Popsicle on command

:Grabbing a ball w/ his left hand that was originally placed in his right hand

All of this progress comes at a time when the insurance company
is requiring to see more dramatic improvement to continue
Josh's stay at Bryn Mawr. Way to go Josh!

I saw something different in Josh's eyes last night. He
really is coming up into a higher state of consciousness.
He has a long journey in front of him. But, I can see the change.

Josh's storming and muscle flexing or toning are still
getting in the way of some therapy. We are trying to reduce
stimulation and excitement in between therapy sessions
to attempt to have him maximize his time with the doctors.

Thank you for all the love, prayers and support.

The Bonjos

Wednesday, January 19, 2011

Weds. January 19th, 2011

Josh has continued this week with some more storming
periods, which have been a little disruptive
to his therapy activities. Still we press on.

Josh's left hand is extremely active, exploring
every inch of sheet, shirt, pillow and whatever
object you put close by. It is almost nonstop,
even when he appears to be asleep. Sometimes
during these push / pull periods, he will actually
lift his head off the pillow as if he wants to sit
up in bed, all the while vocalizing. When
he grabbed my arm and tried to pull himself up,
I asked if he wanted to get up. In between the
growling he said "Uh huh."

Josh goes back to Paoli in the morning for a
follow up CT scan.

We are hoping and praying for the storming to
pass so that he can push through in therapy.
Josh needs to make some more concrete gains in the
next two weeks to be able to stay on course here in the
rehab program.

Please pray for Josh's calm, strength and progress through the
next few weeks.

The Bonjos

Monday, January 17, 2011

Monday January 17th, 2011

Hello Dear Friends and Family,

Reporting directly from Bryn Mawr Rehab today, Josh is well and going strong. His Occupational Therapy person Anne said Josh is physically the strongest patient they have here. This makes their job difficult because he can use all that strength to resist being stretched and pulled as they need to. Mostly, he is cooperative though, and very alert while they are working with him.

Josh is following some simple commands, signaling a choice between OJ or cranberry juice during therapy, making some good groaning noises and really getting some satisfaction working the clicker on a ball point pen.

Josh is going for long periods of time with his trach tube capped, enabling
him to breathe purely through his nose (or mouth).

By the end of the day, he is very, very tired.

They are calling for snow overnight and freezing rain in the morning,
so we are going to post this now tonight, and maybe edit and add in the

Thanks for everything! Good night.
The Bonjos

Sunday, January 16, 2011

Saturday January 15th

Josh had a great day. He has a new tool: a ball
point pen. After trying to get him to work a,
pen light without success, Rose suggested a pen.
He latched on immediately. After a few minutes,
he was clicking it open and closed nonstop.
He enjoyed that all day.

We are noticing the slightest nods in response
to questions and head gesturing with subtle
mouth expressions when he needs something.

Josh is communicating.

More tomorrow. It is late.

The Bonjos

Wednesday, January 12, 2011

Wednesday, January 12,2011

Hello all,

We are all dug out from the snow, but the storm and a bit of flu in the Bonjo household delayed posts this week.

Josh is doing well, healthy and stable still. Plans to cap and remove his trach will probably commence at the beginning of next week. His nurses think he is more than ready and are pushing for it. This will give him the ability to make a wider range of sounds and hopefully re-engage his vocal chords which were seen to be still uncoordinated when scoped. He is making some low growly sounds, mostly in complaint to the rigors of physical therapy, but also while sleeping/dreaming and today when I told him I had to leave. Grrrr...

His wakefulness continues to grow daily, he is tolerating up to 5 hours in the wheelchair, and is showing much movement in his left hand. With those fingers he explores anything in his grasp, reacting with many physical signs when given one of his small toy robots to hold. He is also using his left hand to reach out for things, to reach across his body and possibly drop things when asked to. All of these actions are painfully slow, and when done to command, seem to take massive thought and effort. His right side seems to be disconnected still and so far he has shown no spontaneous movement in that hand.

Josh is tracking things with his eyes, looking up, down, and to the side if directed.
Once again, these movements are slow or sporadic. Last Friday, he watched his sweet blond nurse, Pat, walk in the room and when she said hello to him, he smiled at her with his funny one-sided smile that I have seen many times. A few spontaneous nods at appropriate moments have cheered us, but he has not been able to nod when asked to in order to communicate with us.

The staff at Bryn Mawr Rehab feels he is doing well, waking quickly and early in his recovery process and that this is a very positive sign. But many small physically accomplishments called functional gains, will be needed to extend his stay at BMR. He must show he can work with and benefit from the physically therapy over the next four weeks. We believe he is up to the challenge. We know his strong will be a huge part of his recovery. And as his amazing brain reboots, re-routes, and establishes new connections, he will continue to reveal his emerging capabilities.

Our hearts are warmed by the support of all who are reading this. To our family and friends on the West Coast, we can feel your love over here in the snow-covered North.
Please send good thoughts of strength and mental/physical reconnection to our sweet boy.

Much Love,
The Bonjos

Monday, January 10, 2011

Monday January 10, 2011

We were able to spend lots of time with Josh
this weekend. This morning, he moved to a new,
single room.

Josh is at times, tracking people across the
room with his eyes. If I stand at the foot of the bed,
Josh will track up to look me straight in the eye.
He is also making noises in speech therapy.

Josh made some small movements last night that could
be interpreted as seizure related. We are checking that
out today. So far, it was only one short occurrence.

All of his therapists say he is making daily improvements.

Tomorrow, weather permitting, we are meeting with the
hospital to set a timeline for Josh's discharge. We have
no idea how far into the future this will be.

Love you all for following this,
The Bonjos

Friday, January 7, 2011

Friday January 7th, 2011

Not much to write about today. Josh seems
to be more and more calm in his resting / sleeping
periods each day. He is receiving several sessions
of therapy each day and resting each night.

The doctors changed Josh's breathing cannula
to a smaller size. It can also allow Josh
to inhale through the tube and then force him to
exhale through his mouth and nose. This is all in
preparation to remove his breathing tube completely,
maybe in the next week. It also frees up his vocal
chords to allow him to make sounds if he tries to.

When we sit with Josh, he squeezes our hands
from time to time. We are hoping he knows we are
with him every day.

We will meet with the doctors next week to get a
full assessment and estimated discharge date
which we will all work towards. However, nothing
is set in stone.

Thanks again to you all for everything. Have a nice
weekend. Hug your kids.

The Bonjos

Thursday, January 6, 2011

Thursday January 6, 2011

Josh is still resting comfortably between sessions
with his doctors, nurses and therapists. If he was
described as "storming" before, I would describe his
current state, when not at rest, as "breezy". Josh
either has his eyes closed or open. We believe he can
hear us talking to him, but has very limited ability
to respond. As the doctors tell us, he is still very
early in the healing process.

We are looking forward to pet therapy, pool therapy
and trips to the greenhouse at the hospital. Thanks
again to everyone who continues to send prayers, meals,
cards, and gifts. Many times, that is what gets us through
the day.

There is a great website you all should visit:

This organization is the Acquired Brain Injury Network.
They help TBI survivors and their friends and families.

Love you all,
The Bonjos

Wednesday, January 5, 2011

Weds. January 5th, 2011

Josh got settled into Bryn Mawr Rehab yesterday.
They shaved and showered him and he looks great.
They removed all of his IVs. They will begin to
reduce the size of and then wean him from the
breathing tube within a week or so. He looks very comfortable.

Starting this morning, each department is evaluating
Josh to determine his specific needs. Then a rehab
program will be mapped out. Josh will be working
rigorously all day, every day of the week.

He is in a nice 2 bed room with a great view of the trees.
Currently, he does not have a roommate. The Brain Injury
Unit is very large and spacious. Everything Josh needs
is self contained. Due to the nature of the injuries,
there is not open access to this area of the hospital.

The next 2 weeks are very important for Josh. Please
keep him in your thoughts and prayers and we will keep
you up to date.

The Bonjos

Tuesday, January 4, 2011

Tuesday January 4th 2011

Josh is on the way to Bryn Mawr Rehab Hospital right now!

More later!

The Bonjos

Monday, January 3, 2011

Monday Afternoon, January 3rd, 2011 !!!

It is official! Unless something unforeseen happens, Josh is moving to Bryn Mawr Rehab early tomorrow morning! This is fantastic news and everyone reading his blog should take a moment to rejoice along with us!

A tour of Bryn Mawr Rehab's Brain Injury Unit proved it to be a light-filled, bustling ward with several young people currently being treated there. Josh will have a roommate, receive three hours or more of daily therapy right from the start, and will get to work both individually and in groups with therapy dogs, which we know he will love. The therapists there will focus on occupational therapy (getting dressed, brushing your teeth, etc.), speech therapy to get his voice reactivated, and physical therapy to get him upright and moving his arms, hands, legs, and feet. All of this will continually stimulate and re-awaken his consciousness, and hopefully start to bring him back to himself.

The rest of our family is happily moving home tonight, though the folks at Staybridge Hotels could not have been nicer or more accommodating. The return to home, work, and school reassures us all that life will continue, though it is radically different then one could have ever imagined.

The focus for all of our hopes and prayers can be to let Josh know that it is safe to wake up now. That we are waiting to see in him the slow miracle that the specialist at Bryn Mawr Rehab are known for. Please keep him in your thoughts this evening as he spends one more peaceful night here in the ICU.

Much love to all,

The Bonjos

Monday January 3, 2011

Josh had a restful night,
light to moderate storming.
Overall, an improvement
from the day before.
He opened his eyes during
PT today for a few minutes.
The medical team is meeting
here today in order to
to determine the next step,
either a few more days here
or a move to Bryn Mawr Rehab.

Not much more to say until this
afternoon when we meet with the doctors.
We'll post again then.

Please send us your favorite picture of Jobo
and we will use them on his blog. The more
the better.

Thanks again for your continued prayer and support.

The Bonjos

Sunday, January 2, 2011

Sunday January 2nd, 2011

Josh had an uneventful night,
not needing any supplemental
sedatives. He is completely
off continuous sedation as of
this morning and has not
required supplemental doses
for storming. All through
this change, Josh has
remained very peaceful. It will
take several days before the
medication has completely
processed out of his system.

Josh still has brief storming
periods, but these are becoming
less severe and he recovers on his own.
From time to time he yawns big like a lion
and will even make a throaty Chewbacca growl.
Hopefully, this day will transition into another
calm evening. By morning, more doctors will be back
on staff and looking to assess Josh and make decisions
about the upcoming week.

Special thanks today to the Stadium Conditions Crew
for your special gift last week. We miss you all.

More later.

The Bonjos

Saturday, January 1, 2011

New Years Day 2011

Josh had what has been
a typical night, last night.
Periods of extreme calm, then
the storms.

We are visiting Bryn Mawr Rehab
next week for a tour and a meeting
with the admittance department.
If all goes as planned, Josh could
be transferred some day next week.

Until then, thank you all again, friends,
family, nurses, doctors, and hospital staff
for everything you are doing for us. Please
pray for Josh this weekend.

With Love,

The Bonjos