Pray for Meredith

Papa and Mere sharing a root beer

I’m Meredith.  I’m nine years old.  I’m doing great!  Have a very good Thanksgiving.   Thank you for praying for me.   — Meredith

Lots of dates have passed by that I fully intended to update Meredith’s blog — first day of school, report card, etc., but here we are at last.   Probably the biggest change since the last post is that Meredith started school this year full time in the 2nd grade.  We had hoped that she could start over with the 3rd grade full time, but lots of factors caused us to reconsider that plan.   The primary consideration was the level of assistance she would require to hold her own in the 3rd grade.  Had she started there this fall she would have been behind from the beginning.  Academically she hadn’t fully caught up to that level, so now that she’s in 2nd, she’s very much on an even playing field with her classmates.   She can work more independently here than she would have been able to do in the 3rd grade.

It was hard on her at first being put in a new class with younger children.  Although, honestly, she fits right in not only academically, but socially as well.   But she’s gotten much more comfortable with her class as the year has progressed.    And she understands why she’s there and that she will continue on moving up with this group of children into future grades, and she’s happy about that. 

Therapies are continuing.  She has speech and OT once a week at school (provided by the public school system) and at On the Move Pediatrics once a week.  And she’s made a lot of gains in the last year with them.  It’s just like it’s been from the very start of this long recovery process over a year ago — she will struggle in areas for a time and then surprise us all with a burst of progress, then stay steady for a time and improve again.   Her latest accomplishments are learning to tie her shoes and doing jumping jacks.  Previously her coordination had kept her from doing those well. 

Next weekend I will attend a short training session at the UK Children’s Hospital to become a volunteer in the Ronald McDonald family room across from the PICU/NICU.  I’m glad to be able to start helping out there once a month, but I’m ready to get this first visit back into the hospital over with.  I’ve had lots of opportunities to revisit the Cinci hospital, but haven’t been back to the UK hospital since we left there on May 12, 2009, headed for Cincinnati.    The very idea of walking by that loud, giant ball machine on the 4th floor makes me feel ill — we spent so many miserable hours waiting in those chairs when the family room was closed only to get one bad report after another.  

I know it will be hard initially, but because of God’s continued prayers for healing I get to go back up to the PICU area knowing that Meredith not only survived this disease, but she’s still improving — praise God!   Not everyone has their prayers of mercy answered like we did.  Not everyone in the family room will be surrounded by a group of praying believers, our family in Christ, waiting and hurting with us.   I am looking foward to being able to pray for the families there  and maybe even sharing some hope with them.

There are no words deep enough to convey my thanks to God for His blessings– His healing of Meredith, His strength in the dark places, and His people who loved us and waited with us.   And even if we were never given those blessings, we would still have everything we need in Him.  Because everything is complete in His gift of salvation.  There will be times times when we don’t get the answers we long for,  times when the storm leaves brokeness and pain rather than joy.  As we were reminded in church today before receiving the Lord’s supper, nothing on this earth matters more than our spiritual blessings in Christ.      

From my favorite hymn of late by John Stockers:

Thy mercy, my God, is the theme of my song,
The joy of my heart and the boast of my tongue;
Thy free grace alone, from the first to the last,
Hath won my affections, and bound my soul fast.

Without Thy sweet mercy I could not live here;
Sin would reduce me to utter despair;
But, through Thy free goodness, my spirits revive,
And He that first made me still keeps me alive.

Thy mercy is more than a match for my heart,
Which wonders to feel its own hardness depart;
Dissolved by Thy goodness, I fall to the ground,
And weep to the praise of the mercy I’ve found.

Great Father of mercies, Thy goodness I own,
And the covenant love of Thy crucified Son;
All praise to the Spirit, Whose whisper divine
Seals mercy, and pardon, and righteousness mine.
All praise to the Spirit, Whose whisper divine
Seals mercy, and pardon, and righteousness mine.

It’s hard to sum up what this word means to me.  But it has become to me a heavy word and one that feels never-ending at times.   Meredith recovered from the encephalopathy, from the seizures and the coma.  She relearned how to walk and run, how to eat food and talk, how to write, how to go up and down stairs and how to dress herself.    And she’s spent the last 10 months working hard to recover finer skills — math skills, alphabetizing, conversational skills, balance, opening food packages, buttoning, remembering simple directions, self-control, etc. — and is STILL working hard on these.  We’re halfway through the year and she’s been to about 80 therapy sessions since January, (plus those done at school from contracted therapists, plus 3 hours of tutoring each week)!  The kid works hard with very little complaining.  

Last week Meredith stayed in Mississippi with Gigi and Papa for her very own vacation.  Laura Campbell had her own week there earlier in the month.  And this coming week both girls will be in Virginia with Josh’s parents for the week.  I’m so happy Mere is getting these breaks from therapies and tutoring.  She deserves them.  But we will have to buckle down when she gets back to stay on top of the math and other skills for the classroom.   Everything but the reading comes harder to her now. 

She just started a new medication for her ADHD symptoms (a result of her brain injury).  It’s a non-stimulant that is actually a hypertensive medication but is used for kids with ADHD and movement disorders.   We’re hoping this helps with her attention problems, her hyperactivity and impusivity, and her memory problems.  All of which need to improve for her to make it through school all day in the fall. 

We think there might be some permanent loss in the area of memory for Meredith.  That showed up in the last MRI which was done last August.  Her neurologist believes she may struggle with short term and long term memory problems from here out, but he hasn’t ordered another MRI, so I don’t think we know that for sure.  It could just be slower healing.   That’s my hope anyway.

She will be having another neuro-psych exam done in July.  She last had this done in September when she could barely sit still, couldn’t write legibly, and didn’t know the easiest of math facts.  I’m excited to have that doctor see just how far she’s come.  And hopefully we will gain some insight to help with her next year of school and what kinds of accomodations she needs and expectations and goals we should have.

This summer Meredith and I are outside a lot.  I will never forget her first time out in the sun after 5 weeks of being confined to the hospital.   Or her first time playing in grass again.  Our evenings in the back courtyard of the hospital after a hard day’s work in rehab.  I know that we have been brought out of a valley.  For now we are enjoying a “promised land” of sorts and it feels good.  It has made me more aware of others who are hurting now and who now need my prayers; and I’m thankful to be whole enough again to pray for others.   Recovery is indeed long and painful sometimes, whether it’s recovery from illness or loss of loved ones.   Thankfully we have a God who is with us always and who knows our heartaches; who suffered for us more than we could ever imagine.

“From of old no one has heard
or perceived by the ear,
no eye has seen a God besides you,
who acts for those who wait for him.” — Isaiah 64:4

It’s been a while since I updated, and a lot of wonderful little things have happened.  Last spring while Meredith was in the coma at UK, Laura Campbell was at home with rotating family members watching a robin feed her baby birds in a next in our backyard.  I don’t remember seeing it last year, but I was told she named one of the babies Robert.  This year we have another robin (or the same one?) who has made a nest and we’re ALL watching it feed the baby birds worms.  None have been named so far, but there’s still time!

We had a family gathering at a state park in West Virginia over spring break and that was a wonderful time of being with cousins we don’t see very often.  And on our way home from the vacation we stopped and adopted a puppy as a surprise for the girls!

Meredith finished doing the Interactive Metronome program (what we called “cowbell”) a few weeks ago.  She had lost all interest in it and wasn’t really gaining from it, so we discontinued it.  But I know it helped her in a lot of areas, particularly her attnetion span and her motor skills. 

Meredith continues to make great progress through tutoring and therapies and from her helpful teachers and classroom buddy, Terri Nichols.  She’s doing 2nd grade level math now, her handwriting is improving and her art working is looking closer to what it was before the illness.  She’s getting horse therapy and aquatic therepy once a week in addition to her OT and PT.  And we hope to be starting vision therapy soon too which will help her gain some coordination. 

In one week we will reach the one year mark of when this all started for Meredith.  Josh and I are going to speak about the blessings of it, through the highs and lows, next week in Sunday School.   So many people in that class and in our church were there along side us through it all.  (And many other friends too who we would welcome to come and worship with us next Sunday!!)  A Jars of Clay song has been playing in my mind this week as I remember where we were a year ago and praise God for where He has brought us:

While we wait for rescue
with our eyes tightly shut
face to the ground using our hands
to cover the fatal cut
though the pain is an ocean
tossing us around, around, around
You have calmed greater waters
higher mountains have come down

I will sing of Your mercy
that leads me through valleys of sorrow
to rivers of joy.”  Alleluia!

Meredith and I returned to Cincinnati for two follow up visits.  On Thursday we saw our rehab doctor, and on Friday we saw her neurologist.  Both doctors thought she looked great.  They were very happy with her progress and said to continue the rehabs we are doing and let the recovery continue as far as it will.  Her neurologist (who follows her for the chorea movements and any possible seizures which we haven’t seen since she was in the ICU) says he only needs to see her one more time this summer and he will likely release her at that point.

Since our appointments were on two back to back days, I decided to make a  fun trip of it and we stayed overnight.  We visited her therapists in the hospital and saw some other terrific doctors we knew.  One of her earliest nurses on the rehab floor who loved Meredith passed us in the hallway.  She was completely amazed to see Meredith doing so well.  I think the last time we saw her Mere had just said her first words (Old Mexico!), still had a tube in her nose and wasn’t walking unassisted.  She was moved to tears seeing Meredith.

The best part of our trip was seeing the aquarium — or seeing Meredith see the aquarium.  Last summer, one of Laura Campbell’s first trips to Cincinnati included a trip there.  Josh and I took her while someone else stayed in the hospital with Meredith.  It was early on in the hospital stay, and I was very much a basket case when I was away from Mere.  I have vivid memories of being in the Frog Bog with LC while she and dozens of other kids played on the large frog statues and climbing fort.  I called in to the hospital to check on Meredith, and I wanted desperately to be at the hospital rather than where I was with Laura Campbell and all the other happy, well children.  It was a strange and awful feeling, being so torn and not able to enjoy my time with Laura Campbell or give her the attention she needed.  But on Thursday, as I sat watching Meredith play happily in the Frog Bog I felt like I had come full circle.   I sat and watched Meredith climb and run and play with a deep and awesome sense of gratitude and peace.   

Seeing our old friends at the hospital was wonderful.  And hearing from two doctors that Meredith is still making gains and we should continue what we’re doing was comforting.  But watching Meredith play in the Frog Bog was by far the best part of our trip for me.  She was just another happy kid in the aquarium.  And Laura Campbell was safe at home with Josh, so nothing was tugging at my heart or weighing heavenly on my mind.   Life was good and was about as perfect as I could hope for in that moment.

“I waited patiently for the LORD to help me, and he turned to me and heard my cry. He lifted me out of the pit of despair, out of the mud and mire. He set my feet on solid ground and steadied me as I walked along. He has given me a new song to sing, a hymn of praise to our God. Many will see what he has done and be astounded. They will put their trust in the LORD.” — Ps. 40:1-3

On Fridays the 3rd graders at Trinity Christian Academy are required to say their weekly Bible memory work.  Most recently they’ve been memorizing the Apostles’ Creed (over a few weeks).  Last Friday they had to say it in full.  Meredith hasn’t been doing memory work, but on Friday she raised her hand and wanted to say it.  So standing in front of the class, she said it with very little help from Mrs. Stone. 

I’m not surprised that she knew the Apostles Creed because we say it every Sunday in church and have for years.  But I think her classmates were surprised and I think they were also proud of her.  I wasn’t there, but I heard that the whole class applauded for her when she finished.  Meredith said that made her stomach hurt and embarrassed her, but I tear up just imagining that moment.  I’m sharing this story not to brag on Meredith, although I am proud of her and happy to see her confidence and abilities growing.  But mostly I am overwhelmed at that class of third graders and their compassion  for Meredith.  They know she’s been through a lot and that she’s a little different now, but they still love her and encourage her everyday.  I am so thankful for them and for our school.

We are seeing some great benefits from the intensive therapy that Meredith is getting three times a week.  It’s called Interactive Metronome and is exactly like it’s name.  She listens to a cowbell metronome through headphones and has to keep its beat.  A trigger is on her hand (and is on the floor for when she uses her feet to keep the beat) and measures how accurately she claps with the bell.  The computer scores her accuracy.   Her scores have recently improved a lot, and it’s improving her attention span and motor control quite a bit.  We’ve also seen better behavior and she’s getting better following multi-step commands and answering questions.    I’m hoping we see these great results take place in school too and can gradually lengthen her time there over this next semester.

Finally, after beginning discussions with them in early August, Meredith has been approved for Speech and OT from the public school system.  From our first discussion with them when they tried to dissuade us from attempting the tedious paperwork necessary to get a private school student into the public school system, we’re finally done and she will get 30 minutes per week of those two therapies starting in January.  And for the first time, this year the school system is contracting OT out to private students, so an OT will meet Meredith at TCA.  Speech is still done at the public schools so we will take her there for that.

Overall it only took 3 meetings (with about 8-12 people at each meeting), 5 therapists and psychologists individually observing Meredith in the classroom, 3 therapists evaluating her, a couple of hours of testing, a phone interview and about 2 trees worth of paperwork to cut through the red tape — to prove that she does in fact need the help they are required to provide!    The good news is they will be focusing on skills she needs help with in the classroom that aren’t currently being addressed in private therapies.    I think it will be worth all the trouble!

Meredith is now medicine free! Amazing when I remember back to the summer of 8 meds per day throughout the day, coaxing her into it when she was off the tube and gained enough of herself back to refuse them or spit them out. One more battle behind us, hopefully for good.

We are considering one medication for her ADHD-like symptoms (impulsiveness, hyper-activity, lack of attention/focus) suggested by her neurologist. But for now we are waiting to see the full benefits of the intensive therapy (interactive metronome) that she does 3 times a week. It’s supposed to help those behavior problems as well as motor planning and cognition. It’s a boring therapy but the therapists do their best to make it fun and to motivate her. She will continue this through January which will give us time to see the results before her next neurology appointment on February 5th.

I want to share with you the lyrics of a Bebo Norman song. I first heard this on one of my early trips between home and Cincinnati. It became my prayer and my plea wherever I was — in the hospital, at the Ronald McDonald house, at home. At that time it was a cry for mercy; words I cried out in fear and pain that gave me hope. And now I say them asking God to keep my eyes on Him now that life is nearly normal again and very hectic and sometimes mundane. Now that my thoughts are in the everyday details of transportation and school lunches, library work and laundry, and everyday parenting decisions. May God still cause me to cry out to Him and to know my constant need for Him and His constant goodness to me.

“God, my God, I cry out
Your beloved needs You now
God, be near, calm my fear
And take my doubt

Your kindness is what pulls me up
Your love is all that draws me in

I will lift my eyes to the Maker
Of the mountains I can’t climb
I will lift my eyes to the Calmer
Of the oceans raging wild
I will lift my eyes to the Healer
Of the hurt I hold inside
I will lift my eyes, lift my eyes to You

God, my God, let Mercy sing
Her melody over me
God, right here all I bring
Is all of me

‘Cause You are and You were and You will be forever
The Lover I need to save me
‘Cause You fashioned the earth and You hold it together, God
So hold me now” ~ Bebo Norman, I Will Life My Eyes