TIRR Challenge

M has come much further than many expected: his language skills are very good; he accomplishes some aspects of self care (eating, dressing, shaving, etc., once everything is set up), and he can walk a fair distance indoors in a quiet area. His memory continues to improve. And he is less self-centered and volatile than many with similar brain injuries. Go outside a routine he learned before the injury, though, and you'll see how profoundly he remains affected. And when he encounters an obstacle (for example, his electric razor doesn't work because it's unplugged), he's unable to problem solve (in this example, he'll just switch the razor off and on, then put it down, not even knowing or able to check the plug). He's supposed to do something; he can't do it, so he's stuck. Quite a difference even from a two-year-old. An incredible entity, the brain; but broken, it breaks down in so many critical ways.

Four and a half months since M's injury and just when I get used to one routine, it changes. Since March 2nd, we had the same therapists and same routine - physical therapy, occupational therapy, speech therapy, and group therapy five days a week. M has been moved to the next step, TIRR Challenge, and this week had four days of mostly group therapy. It will take another week or two for the evaluations to be completed and his treatment plan developed and approved. By then, we'll get used to the new setting and new personnel, who already seem enthusiastic and kind.

We'll have a lot more time at home, so more time for one on one work. And we have an exercise program for the pool that we can do in our neighborhood pool. Having so much time with M at home, though, reminds me of being at home with a toddler, only harder. To keep M engaged and working productively (on worksheets or rudimentary housework) or playing, constant attention is required. Every week, though, something gets easier. I pray for strength and to align myself with God's will. After all, his burden is light.

You have it in you to help

During morning rush hour a few weeks ago, truck driver Roberto Gauna responded instantly to the horror unfolding in front of him on a Houston highway. A young motorcyclist, Jeff Blessing, had hit another vehicle and was hurtled across the freeway only to lie crumpled in the middle of the lanes. Gauna maneuvered his cement truck to protect Blessing.

I thought you were fighting for your life," a tearful Gauna told Blessing on Wednesday when the two met for the first time since Gauna used his cement truck to stop traffic and keep other drivers from running over and killing Blessing. "I was holding your hand, and I prayed, 'Lord, give this man life,' and he did."

Not many of us have the assurance we would react so bravely and quickly as this wonderful story recounts. We all have it in us, though, to respond lovingly and kindly to the suffering of friends and loved ones.

I've been blessed many times over with the help of friends and neighbors. A few days ago, I read a primer for helping loved ones suffering as M and I have been. It starts with a bit of finger wagging: " Some people are gifted helpers. For the rest of us, no 'gifting' is no excuse. Drop 'let me know if I can do anything' from your vocabulary and make a difference in a hurting friend's life. " The article then continues with a useful list of what you can do to help friends in need. Thank you, all those who have helped and are helping me.

Think basics. When life gets hectic, refocus on the basics of running a life and family: food, clothes, cleanliness and childcare. Many friends did for us, thank you. Specifically,

• Offer to run regular errands.
• Provide meals.
• Do laundry.
• Pick up and deliver dry cleaning.
• Gather a group of friends willing to clean and rotate teams or pay for a service.
• Try the team approach for helping care for the children.
• Help provide money, transportation, personal support and treats. A gift of money or restaurant gift cards might help relieve financial strain.
• Provide transportation to appointments or take children to school or activities.

Offer your presence. Sit with families. Cry with them. Listen. Offer to go with them wherever they need to go. A presence can comfort in this lonely time. Offer to sit with the injured or ill family member to free others up for personal errands or even a nap. I always felt so torn, wanting a constant presence with Mark, but needing to be elsewhere, too, and needing finally a break before I broke.

Deliver a treat. For the longest time, in ICU, M couldn't have flowers. And he wouldn't have recognized any treats anyway. But thoughtful friends and family delivered treats to the children -- sweets, games, and special meals -- who were hurting and undoubtedly felt abandoned and scared. The gifts were a recognition that others were thinking and caring for them. So too were the gifts of books and personal care items to me, a concrete reminder that others were thinking of us and I had a life outside the four walls of the hospital.

Coordinate. My dear friend AH has been a lifesaver, coordinating meals and the flow of information via email. Other suggestions in this article include making a flowchart, a schedule, a phone log. More suggestions? Follow up; remember event milestones.

Pray. Do it, believe in its power and tell the family you're praying. We believe fervently in the power of prayer. Even had we not, knowing that others around the world have us in their hearts bouys us immensely. Prayer begats more prayer. The one thing I can do in return for others now, in addition to giving heartfelt thanks, is to pray. Our church has been doing a wonderful series, Break Through, on God's kingdom.

Ask. Ask for a specific need then meet it. We've had folks take our children for sleepovers, to movies, even on vacation and offer to pay for summer camps. Our dog, too, was not forgotten. Friends have walked him, let him out daily, even taken him home to play with their dogs.

Texas Legislature comes through

I'm wincing as I write this
-- the Texas Legislature sat on every air pollution control measure GHASP supported --
but this year the Texas Legislature appropriated more than $4.5 million to address the Comprehensive Rehabilitation Services waiting list.

So tonight I received a call from M's counselor at the Texas Department of Assistive and Rehabilitative Services. Months ago she had cautioned me that M, though eligible for services, would not receive financial assistance until the Fall at the earliest. But now, the money is available and the list is moving. DARS won't pay for services already rendered, but will help in the future as a payor of last resort (above insurance). Our counselor said that they can pick up the copays for the Challenge program and could continue his participation after his insurance runs out.

Below is more info on DARS:

The DARS Division for Rehabilitation Services (DRS) realizes that timely and intensive rehabilitation is crucial for a person with a traumatic spinal cord injury or traumatic brain injury to re-enter the community; and live as independently as possible. For some, it's relearning skills most take for granted, such as walking, talking, eating, or writing. Or, it may require learning to accomplish these tasks in a new way.

Mandated by the state Legislature, a percentage of fines collected for misdemeanors and felonies goes into a special fund to pay for these services. DRS provides payment for the following:

• Inpatient Comprehensive Medical Rehabilitation: A team of qualified professionals provides a variety of intensive therapies, medical care and other services to help individuals live as independently as possible. Services are provided on an inpatient basis at an accredited rehabilitation hospital.
• Outpatient Services: Rehabilitation Services for occupational therapy, physical therapy, speech therapy and cognitive therapy may be continued on an outpatient basis.
• Post-Acute Traumatic Brain Injury Services: These services help an individual deal with injury-related cognitive difficulties such as memory loss and/or inappropriate behaviors.
  

Because there are more consumers requesting services than there are funds available, the CRS program has an Interest and Waiting List. Consumers are served in the order in which a plan of services is completed and the consumer is ready to participate in those services.

To be eligible for the Comprehensive Rehabilitation Services program, the individual must have a traumatic brain injury and/or spinal cord injury that results in a substantial impediment to functioning independently. There must also be a reasonable expectation that the individual's ability to function within the family and/or community will improve with the provision of services.

Knowing our next step

Ms team (his rehab doc and therapists) have come to a consensus for his next destination: TIRR's Challenge Program near the medical center. My first thought? Free parking!!! I must have spent more than $700 in parking since M's injury.

M will start Monday after next unless there is a waiting list. If so, he'll stay in the TIRR day program at the hospital until a spot opens up for him. In the Challenge program, he'll continue physical and occupational therapy, but the emphasis on cognitive rehabilitation and daily living skills will intensify.

As in the day program now, I'll be expected to spend the day while M is there, though I can't participate in the groups. Groups generally are closed to family members to protect patient privacy and encourage patient independence and group bonding.

M will be learning skills for independent living. How do you plan your day and week? How do you keep up with the things you need to do? How do you keep on track and keep moving forward through your to do list? Even as simple to us as how do you plan and prepare a meal? How do you stay safe? How do you get around town given that you are not yet able to drive?

Many of these skills are things that you and I do seemingly without thinking. For the brain injured person, each one of these requires tremendous thought, effort, use and practice at coping skills. What do you need to prop up your unreliable memory? What do you need to prompt you through out the day? How do you ensure you'll use your aids? His team must see potential in Mark and agree that he may eventually be free of constant supervision and caregiving.

In my last post I asked for prayer for M to be better at initiating, less impulsive and more empathetic. Last night M thanked me for all that I've been doing and said he realized how much I have to do. And today, for the first time, he called to me from another room to help him get up; very important for his safety, my peace of mind and sanity. He also day by day better controls his impulses.

Also new for M, he's getting into the pool at his sister's house. His left arm continues to grow in responsiveness and walking gets better by the day. The children are looking forward to a day when their dad can play a game like Clue with them (he's close to be able to follow the rules) and better still, shoot off the rockets he made them for Christmas 2006. Keep praying and bless you all.

A birthday today!

M's strength, ability to do things, and walking continue to improve. Yesterday, he walked with his therapist outside, up and down curbs and ramps and stairs. Insight, impulse control, and emotiveness remain a challenge.

Please be in prayer for his cognitive and emotional qualities to be restored as his physical abilities return. For his safety, M must be under direct supervision round the clock. He can stand and walk on his own, but doesn't understand why he shouldn't. He'll swear he won't get up without calling me, then does as soon as I step out of the room. So I can't step out of the room, the potential consequences are too grave. If he should fall and suffer another head injury, he would have an even worse prognosis.

M has three more weeks scheduled of day therapy (4-5 hours of therapy) at the TIRR hospital. The next step's not yet been decided.

3 Sing to him a new song;
play skillfully, and shout for joy.
4 For the word of the LORD is right and true;
he is faithful in all he does.
5 The LORD loves righteousness and justice;
the earth is full of his unfailing love.
6 By the word of the LORD were the heavens made,
their starry host by the breath of his mouth.
7 He gathers the waters of the sea into jars;
he puts the deep into storehouses.
8 Let all the earth fear the LORD;
let all the people of the world revere him.
9 For he spoke, and it came to be;
he commanded, and it stood firm.
Psalm 33 NIV