Climbing Past Expectations (13 Month Update)

August 17, 2011 by  
Filed under Our Recovery Journal

One of my favorite phrases that my kids have learned is “you get what you get and you don’t get upset.”  Whether it is a toy to be played with or an action to be taken, our kids have learned that many times in life you simply accept what you’re given and do your best to be happy with what you have.

One rule of thumb in brain injury recovery is that the recovery takes place in a year.  Many doctors cite the one year mark as THE baseline for the complete recovery.  Medical research indicates that most of improvements that occur after the one year recovery mark are generally those that can be categorized as minor.    In a sense, the medical field has held the view that you pretty much get what you get after the first year.

Maintaining therapy is one aspect of major recovery that becomes more difficult as time goes on.  New goals are set each month and if goals aren’t met, therapy is discontinued.  In Jess’ case, much progress has already been made up to this point and every month the goals represent brand new mountains to climb.  The new mountains are taller, steeper, and more daunting each and every month.  The goal of therapy is to regain the maximum amount of function, and it is deemed no longer useful once the improvement slows or stops.

 

The Apprehension of Passing the One Year Mark

During the course of the past year, the “one year” timeframe for recovery was a comforting thought.  We held the expectation that good stretching and hard work would lead to continued improvements and improve the quality of Jess’ life for at least a year.  We had months and months to expect improvement, and that improvement was documented every few weeks as Jess was able to do at least something a little better than she had before.  Now with the one year mark in our rearview mirror, time is no longer on our side.  At the one year mark, it is terrifying to think of the answer(s) to these two questions:

  • Would we live the rest of our lives with the same exact limitations that we lived with on day #365 of the recovery?
  • Would all the time spent stretching and working out now be needed to simply maintain the level of competency that we enjoy today?

Now in month 13, the “one year” timeframe is a scary thought.  Although setbacks have become less frequent as life has normalized, it is easy to see how it will be difficult to continue making steady gains in future months and years.  Each day needs to be as perfect as possible as it pertains to medication, motivation, and Jess’ overall health in order to keep her recovery bus moving forward.  Many patients slip into neutral at this point, and still others into reverse.  Our goal is to allow Jess opportunity to be happy with her current progress while at the same time being hungry for more.

 

Motivation vs. Pain

Every couple has disagreements, and some of our biggest current disagreements involve doing activities she perceives as difficult or painful.  Two such activities are going swimming and playing with the baby on the floor.  Both of these are now possible but also uncomfortable for her.  Going to the pool is the one time she has a chance to lose the brace and walk with bare feet, but anything less than 4 feet of water results in significant pain with each step.  Once the water is up closer to her shoulders, walking is possible but can still be painful depending on how her right foot advances and strikes the pool bottom.

As for playing with Charlotte on the floor, I can’t imagine how uncomfortable or painful it is for her to position her legs as she sits down on the floor.  Charlotte is now old enough to walk around, play, and pass toys back and forth.  She needs to gain a greater comfort level and rapport with mom.  I constantly ask Jess to go swimming or to get on the floor and play with the baby, and those requests often result in arguments about she doesn’t want to and will do it next time.

I have been waiting for “next time” through many arguments, many weeks, and much disappointment.  Recently, “next time” has actually been occurring more frequently.  and I was thrilled to see some evidence that these activities seemed easier for her than they have in the past.  Getting onto the floor is something that Jess can now do (more or less) by herself.  Placing the toy bin next to her allows Jess to spend the kind quality time with Charlotte that a mom and toddler deserve.  This newfound independence enables me the freedom to leave the room for a while.  It’s amazing how liberating it is to have that time to get something cleaned or put away in the house.  Persistence in demanding Jess do these activities has paid off.  Last week, the roles were reversed and Jess actually initiated both of these activities without any prodding.  Our schedule was gladly changed to give her opportunity to do them.

We purchased new couches and Jess can now get up and down much more easily.  When the carpet is clear of toys, she can get up independently and pay a visit to the kitchen, kid’s room, or bathroom.  For the first time, I feel comfortable with her doing this without actually being present in the room.  Baby steps toward our ultimate goal of leaving her home for a few hours and trusting that she wouldn’t fall or injure herself.  With Jess and three kids at home, there are times that my assistance is required every 5-10 minutes for hours on end.  Jessica being able to do a few more things for herself is the best gift I have ever been given.

This newfound independence is also a gift for Jessica’s motivation.  Motivation is necessary for improvement, and finding motivation to continue lifting, turning, and positioning items in therapy is more of a challenge each month.  Jess continues to walk further, faster, and with less assistance on the treadmill.  She has slowly increased the use of both hands.  These gains have provided her results oriented personality some results oriented motivation.  Even though she has limited control and strength in her right leg and hand, Jess has been working on using them more often.  Normally, she leads with her good foot up the stairs and her bad foot down the stairs, but recently she has surprised me by trying the stairs by alternating her feet.  The first step was an unexpected  surprise as I thought she lost control and was about to fall.  By the 3rd and 4th step the uncertainty changed to pride and I couldn’t help myself from crying at her success on this task.

 

Realistic Expectations

A full recovery is unlikely for us… there was just so much initial damage that it would take an act of God for Jess to regain the function she had before the trauma.  However, things get easier every month.  As I look back at where I was on each day a year ago, it is a grim reminder that things could have ended up much worse and life could be much more difficult.  Jess has exceeded expectations throughout the past year, and we fully expect her to continue working hard and making progress.  Although she has now crossed the 12 month finish line of brain injury recovery, there is progress that can still be made and we expect her to take advantage of every opportunity to achieve her goals.  “You get what you get and you don’t get upset” is not a philosophy that we’re willing to adopt quite yet.  We feel that there are months and years of slow but steady improvement in our future.

 

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Comments

3 Responses to “Climbing Past Expectations (13 Month Update)”
  1. Christen Palombo says:

    It is helpful to share in your experiences and I will add you to my prayers. It’s good to hear that Jess has exceded the expectations you all had and so much can happen in the future. God Bless you
    Christen Palombo

  2. Christen Palombo says:

    It was helpful to be able to share in your experiences through your writings and I will add you to my prayers. It’s good to hear that Jess has exceded the expectations you all had and so much can happen in the future. God Bless you
    Christen Palombo

  3. George McClintock, St. Clair Hospital says:

    I read with great interest your entries on the website, and certainly wish the very best for you, Jess and the kids. It was great meeting you under rather unfortunate circumstances yesterday, and I was anxious to begin reading. As you may remember, I am the retired St. Clair teacher. We are practically neighbors, so if there is anything you need at anytime, shoot us an email or give me a call at xxx-xxx-xxxx.
    I will continue to read with the hope and prayer that Jess’ recovery long passes the twelve-month point, and that she regains all of her abilities and mobility in the next few months. Tell her to keep swimming!

    Edited: Reason – removed phone number

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