December 4, 2014 -- A Couple Rougher Weeks

I have a quick post to request your prayers covering our girlie.  Her pain has started to worsen again.  Last week she was only able to attend school about half time, and this week has not been much better.

We have heard from several people with the metal hardware in their backs that cold weather definitely causes pain.  So we believe that the recent brutally cold weather was definitely largely to blame.  However, this week, the weather has warmed up, and Hope is still suffering.  Today was a particularly hard day, and she came home early from school again.  She even agreed to take Ibuprofen today, which she has not done since early October.  She is also having her involuntary "jerks" again, which then progressed to a few minor seizures this afternoon and evening.  Hope is not sleeping great, but likely due to the worsening pain.  It all goes hand in hand.  We believe that we are somewhat to blame as well, having had a couple of packed weekends, with long hours in her wheelchair, was probably too much, on top of trying to do full time school again.  It is so hard to gauge what is okay and what is too much, especially when it seems like she is so much better!  We try to remind ourselves often of the 3 to 6 month recovery we were warned of. . . that it is!  It was 3 months since surgery this past Tuesday. . . little by little.

These past couple weeks have presented more temptation to feel discouraged and frustrated.  Every day seems to take an unplanned direction.  In our family, it has become a novelty to have a day go as planned. . . ha ha!  What can we do but laugh at ourselves if after all this past 3 years have held, we have still not figured out that life is not ever in our control. . . it is not ever going according to "our" plan.  It is hard to continue to watch our precious girl suffer so much.  But as always, "not my will, Lord, but Yours!" is what we need to consistently tell our hearts and minds.  He always supplies the strength and grace that is needed!  He is always good, no matter the circumstances!  We must stay focused on trusting and seeking Him in every circumstance!

I took some time tonight, before writing this post, to read a little bit of the journaling Trev and I did in the first few months after Hope's brain injury. . . it is good to do that now and then. . . painful, very painful to remember the horrors of some of those days. . . but incredibly good to be reminded of how far Hope has come. . . how gracious and merciful our God has been. . . how sustaining His grace can be through the darkest hours of our lives. . . how deep His love flows for His children. . . the rich blessings of belonging to the body of Christ. . . and so much more. . . 

Hope is a joy, and at some points through these bad days, you forget that she's in pain.  God has graced her with such strength and ability to find joy in spite of the pain.  She was absolutely thrilled to attend her youth group Christmas party tonight, even after the seizures (with daddy sitting reading for his sermon prep in the van while he waited close by).  She was determined to go!  She has such a compassionate heart, too. . . a couple of her friends from our church left to visit family for an early Christmas celebration, and were disappointed to now miss the new party date after it was postponed due to a bad snowstorm last week.  Hope decided that she is going to fill a can (that held her white elephant gift tonight) with candy and treats for her friends that had to miss out!  She explained, "This way, my gift will turn into a gift for all of us!"  Here's a picture of our sweet girlie on her way to the party. . . 

The kids were supposed to wear a tacky Christmas sweater to the party.  Hope's awesome teacher's aide, Mrs. Kornelson, made this totally fun sweater for Hope.  She was so excited to wear it!  And she won 2nd place for the best tacky Christmas sweater. . . mini chocolate eggs, and a Starbucks card were her prize and she was delighted!!!

We have planned to take a step back and start limiting Hope's time in the wheelchair, making her full time school, church, and youth group attendance the priorities for now.  We will see if this helps ease the pain.  Most of the pain still comes from the neck and shoulder region.  She is holding her shoulders at about a 2 inch difference in height due to the tension and pain, which actually makes her look more crooked again (since surgery, that is, of course!).  We're working with her on how to relax her shoulders and straighten out, but it's hard to do, especially around her brain injury muscle obstacles as well.  Pain always means tightened muscles and usually involuntary muscle movements/tightening, as well, for Hope.  So she is not as in control of her muscle movements when she is in pain. . . similar to when she is concentrating hard on doing something and another muscle movement joins in uninvited, but is there none the less!  : )  It's another vicious cycle like with the lack of sleep. . . more pain, less sleep, more tightening of muscles, more pain, and on it goes.

Her incision is still bothering her a bit, but it looks good other than stitches still working their way up and causing irritation.  Also the numbness and nerve pain continues, most concentrated around her neck and the middle of her back, but lately at the bottom of her incision again, too.

We are going to the see the back surgeon tomorrow morning for Hope's 3 month post op follow up appointment.  She will have x-rays taken to check on the hardware in her back.  We are not expecting there to be any concerns by the doctor. . . we see her current pain and struggles just as the nature of this type of marathon recovery from such a major surgery.  And we believe that the doctor will say the same thing.  All things considered, Hope has done so very well in her recovery, with no major complications, such as infection that easily could have landed her back in the hospital for months!  We are very thankful for this, and know that God is to be praised as always, in spite of these more recent setbacks with increased pain.

Well, dear ones, I wanted to write a quick update so that you could be praying for our hurting girlie and her specific needs. . . yet again, I have failed to be "brief!"  Hmmm. . . not sure that word even exists in my vocabulary!  There are many more things that I would love to share with you and will in time.  But for now, thank you for your continued prayer, love and care for our sweet Hope and for our family!  You are another of God's many blessings in our lives, and "I thank my God in all my remembrance of you."  Phil 1:3

Romans 5:3-5
"More than that, we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God's love has been poured into our hearts through the Holy Spirit who has been given to us."

We see this truth in our sweet Hope's life, by the grace and power of salvation through Jesus Christ at work in her!  Her latest passion is the persecuted church.  As I said, I have much more that I would love to share with you, but for next time.  Until then, our deepest love and thanks to each of you for your continued prayers on behalf of our Hope!  God is faithful and greatly to be praised!!! 

You are loved, dear ones!!!