New Normal

After consulting with three of Jerard's doctors yesterday, this is what we've learned :
~The function Jerard lost in this last major seizure episode he will most likely not regain. We'd noticed that also from his seizures in 2010 - after losing the left side function of his body he really hadn't regained any use even with physical therapy.
So we are looking at a "new normal". He is quiet, doesn't move much. He will continue to be fed with a naso-gastric tube for another 3 - 4 months. Then, if no swallowing has returned, he will have a permanent tube inserted into his stomach (so he doesn't have a tube hanging out of his nose all the time.)
He continues to take two anti-seizures medications and get nebulized every four hours for breathing.

Warrior Testimony

Thursday, Ben's karate sensa, Nell, spoke at the Faith Academy Elementary Chapel with his Buishido Kai Karate Team.
He had a great message on being a warrior in Christ, hiding God's word in our hearts, and walking in the full armor of God.
Ben was able to participate in the karate demonstration.

Jerard Update 3/21/12

Jerard continues to have fevers despite the fact the recent x ray shows his pneumonia is clearing up. He has been started on a new antibiotic.
Yesterday he had blood taken for blood cultures to see what we are dealing with.
Thanks for praying for him and us.

Morning Walk Musings

As many of you know, Jerard has been sick and was in the hospital for 8 days. Even though he is home he is still very sick and running fever.

At times I've been asked what I think of Jerard being in our family; if I have regrets that we ever took him in to care for response to that, I offer the following:


Our son struggles for air
nebulizing every two hours
his little body quivers
arm shakes
will he be alright?

Or is this his pathway to Jesus' arms?
I know not.

I awaken at 2a.m.
More meds to deliver
Change diaper.
His life is precious to me
The gift of his 'special needs' irons of fire Christ is using to mold
me into HIS image
and I thank God for this gift
I thank God for the gift of Jerard

I pray again that I will continue to grow in patience and all that
God wants for me
I pray for our family, for unity, for building each other up in love.

The road for the past four plus years has been hard
strewn with anger, hurt, tears, depression...
strewn with conflict, sullen silences
and yet overarching, God's mercy.
His grace.
Even in the darkness of soul and family life
His light shining through
His love lighting a pathway of healing - personally,
I see each of us growing
I see light shining
I hear more laughter
I hear more building up words
We are each growing
I see tenderness...towards our special gift of Jerard
I see patience growing in all of us
ever drawing each of us closer to HIM.

This gift,
our special needs son
His neediness is the gift
His cute smile,
His gentle blind eyes

People wonder why we'd ever take a special needs kid in in the
first place
let's just say 'ignorance is bliss"
we didn't know what we were getting in for when we took
James and Jerard
and like I've said
it's been a hard road
but a road full of mercy
a road leading me closer to my FATHER's love
a road leading our family closer to HIM and to each other
a road I do not regret traveling
inspite of all the travail
a gift.

He's sleeping peaceful at the moment.
Fever of night gone.
Phenobarbital and keppra coursing through his body,
inducing sleep
slowing down seizure pathways
Three antibiotics fighting off infections
and yet he still runs fever.

And all I know is that all is grace
And my FATHER knows what lies ahead
I rest in HIS loving arms
Thanking HIM for HIS gift,
Thanking Him for Jerard.
Amen and Amen.

3/17/12 - thoughts from my morning walk

Jerard is Out of the Hospital

Beth and I brought Jerard home from the hospital today. We are very happy that he is home. This latest hospital stay was for 8 days, with the latter half of the stay trying to get his progressive pneumonia under control.

He still has a bunch of medications (10 in all) that he has to take, including one through IV (through the use of a heparin lock), and the rest through a feeding tube. He is still NPO (meaning nothing by mouth) so he gets a milk formula every three hours along with whatever medicine he is due for.

Thank you all for your prayers. We really appreciate them and still need them very much.