Update No. 75 ...from Lori

Sent: Wednesday, March 23, 2005 1:07 PM

Marinucci No. 75 March 23, 2005

Hi.

Gerry has made a very good transition home. He often states how he
enjoys his new home and how good it is to be back with family. I have been
"running him" fairly hard, going to many school outings, doctors visits,
church, walking almost 1/2 mile to the club house, various home therapies, setting
the table, devotions, playing instruments, house work, having people to dinner,
etc. He is exhausted by 7:00 PM! The good news is that he is sleeping
through the night (10+ hours) which is great... I don't do well with sleep
deprivation. I am trusting that his stamina will increase. I am also
learning his pace, when to allow him a few minutes respite during the day so he won't
blow in frustration.

Surprisingly, he is very aware of his surroundings and is protective of his
family making certain all doors, windows, gates are locked and secured. He
also wants us to wait outside when we get home to ensure that "it's safe"
before we enter. I believe he has had an increase in clarity since he has come
home. When the children are out of his sight, he is questioning where they
are and what they are doing and eager to pick them up from school at Belinda's.
His continued stated desire is that the children would respect him "even though
he doesn't have a brain" -- this emotional desire is so strong that it
flows through a lot of his conversation. Please pray in this regard. The girls
"chattering" especially when they are pretending, is still bothersome, and
I'm working on getting a playhouse/shed set up outside to help with this
problem.

We had one day that Gerry refused to shower, shave, etc. and no amount of
coaxing would change matters. The "power struggle" was on. Although
frustrating, remember that I've been counseled to keep to a regular
schedule, and set expectations, stand your ground and don't give in... I was rather surprised
by his coherent reasoning and justification for not doing so. He wanted a
down day just to be a little grubby and didn't want to be evaluated every day. I
am learning too. I gave in and he went to town a little rumpled, oh well.
Emotionally, I think it is more respectful and important for him to have a
say in his schedule. The profanity and hollering in an aggressive manner still
happen at times, but eruptions are decreasing. I sense a calmness coming over
him. I believe the aggression will decrease once we learn his tolerance level. Pacing
seems to be the key so far and its an uncertain balance of when to push and when
to rest.

To answer your questions, I'm continually fighting the insurance company
which is exhausting, and Gerry doesn't like me on the telephone! There are no
therapies set up yet, even though Aetna promised to step in once Hemet failed. We
were hoping Hemet would do the right thing, but felt pretty confident they would keep
on the same path of no services, this despite their own responsibility for
contracted services. I believe Aetna has failed as well, since they could
have allowed Gerry to stay at CNS until 4/1 knowing the difficulty with Hemet.
Aetna opted for early discharge knowing the prior problems with Hemet but assured
me his care would not be compromised. Aetna said they were on to Hemet’s ways and would
step in immediately. Unfortunately, they have not and have failed to give Gerry
the continuous care he is due. Pray specifically that therapies will be
established soon as my employer will be changing insurance carriers to Blue
Cross as of 4/1. It is always easier to transition if you have a "level of care and
treatment established" rather than undergo the re-evaluation process. Also
I am hoping to be assigned a case manager with Blue Cross. This is not
typical unless you are an inpatient or facing a surgery. Gerry doesn't fit
this criterion, but he still needs many evaluations such as: an
endocrinologist, neuro-opthomologist, neurological testing, audiologist, etc.
I desire someone to help manage me though the maze.

I have taken some time off work for this transition. Until I can get his
needed therapies established (to me this is the priority), I can't figure
out what "care" I need in terms of "supervision" for Gerry while I work. Thank
you to those who have indicated a willingness to help in this regard... I have
not forgotten you. I'm just waiting for things to fall into place. Also I
have an appointment to meet with the State Vocational Rehabilitation Department
soon to see if Gerry qualifies for any retraining and/or assistance in
finding him employment. There is also a community college in Orange County that has
a 2 year program specifically for brain injury that I am exploring. It
seems more prudent to pay for someone to drive him to Orange County for a program
with a goal than to pay for someone to "babysit/daycare". Please pray for
God's guidance in the next step. He has brought us this far... I am more
confident than ever that God will provide.

Thanks for your continued prayers and letters.

Love Lori