Wednesday, January 16, 2013

Update on Marissa

(I've put a few updates on facebook about Marissa, but thought I would put one on my blog as well, to catch anybody I've missed)

First order of business, at Marissa's appointment last Friday we were informed she DID NOT have scoliosis nor were there really any leg length issues.  Initially, that seemed like pretty good news.  The next order of business was to narrow down what she did have.  We were sent over to St. Elizabeth to have blood work done to check for any hidden infections.  We had the results within a few hours, no infections.  Next they ordered an MRI.  At this point I must put in a plug for Children's Hospital in Omaha (although we were dealing with the Lincoln office).  Knowing we were out-of-town they worked so quickly and efficiently, not only getting our insurance to pre-approve the MRI at 4:30 on a Friday afternoon but also getting us back over to St. Elizabeth for an MRI at 6:30 that evening.  I was impressed.  Today I got to talk with the doctor who had ordered the MRI--an MRI that continues to show what it ISN'T but has yet to really alert us to what IS going on.  Basically what it comes down to is there is fluid in her hip.  The fluid is causing her to keep her hip out from the joint, which makes the leg seem longer, which in turn makes her limp.  We're almost at the month mark of when the symptoms first appeared.  In that time her hip has improved greatly--the limp isn't as pronounced and she only has pain if it is manipulated (like by the doctor in an exam) or if it is suddenly jarred (like a little brother jumping on her).  Her doctor is having her take an ibuprofen tablet three times a day and come February 1st we'll be back in Lincoln to see if that has helped.  The bad news--if things don't improve there is a good chance we're looking at the possibility of rheumatoid arthritis.  Because I have an autoimmune disease (as do other members of my family), the fact Marissa could have an autoimmune disease isn't too far-fetched.  Obviously, we're hoping that will not be the case.

Marissa is doing great.  I've gotten to spend some fun one-on-one time with her hanging out in a variety of waiting rooms.  We take silly pictures with her camera.  We joke about the medical procedures she's had done. We bring our books and sit next to each other reading the waiting time away. I've been able to prep her by sharing my experiences--numerous blood draws for thyroid monitoring  (did I ever tell you about the time someone broke a needle off in my arm?) and three MRI's under my belt!  And in my heart I've had this thankfulness for all the health problems I have had, that I can share my experiences with her, because she has gone into everything like a little champ just as jolly and cheerful as ever.  I have thought about her unwavering trust in me, her obliviousness to the worrying.  Maybe that's just being eleven.  But you know, it's been a beautiful visual for me, the mommy.  How my daughter trusts me . . . should I not be trusting my Heavenly Father with such a pure, worry-free faith?  I think of that verse from Psalm 131:2 "Surely I have composed and quieted my soul;  Like a weaned child rests against his mother, My soul is like a weaned child within me."

I've grown in that area.  When I think back to 22 year old me dealing with thyroid issues for the first time, or 26 year old me flipping out over the brain tumor . . . Thirty-three year old me is not as crazy as the earlier versions of myself.  (That's a good thing).  I'm calmer, less prone to my own research . . . I pray more.  I hope that Marissa has nothing.  If it is SOMETHING we'll figure it out.  As her mother it is probably expected and assumed that I would find my Marissa Grace pretty awesome, but I just know that if she does end up with something more serious she will rock it, because she is that kind of little person. I love that girl.

How to pray for her?  Pray that the ibuprofen does its job.  Pray that two weeks from now there will be much improvement.  And pray for our hearts in the event this doesn't go as we hope, that we'll embrace a new chapter in our lives with graciousness and that we will RUN with it.


sarah j. said...

it's so good to hear what it's NOT. we will be praying the ibuprofen works!

Anna said...

I'm treasuring these does my heart good to hear how you're leaning on the Lord and not your own wisdom, or medical wisdom. And what a sweet time of growth for your precious daught...I'll be praying in the mean time. Looking forward to seeing how the Lord answers this prayer. He has definitely been on display in your lives during this trial. *hugs*

Brooke said...

Good grief, I cry every time I read your blog lately. :-) Our God really is amazing in His providence and provision. Praying for Marissa!