CaringBridge Journal

Anne’s eyes!

I spent the morning in Kate’s class celebrating her last day of 3-year preschool. It was a sweet morning with Kate and Canon.

When I got to the hospital, Anne’s eyes were moving… and tracking… and focusing! Her eyes have improved HUGE amounts, literally, overnight! Her eyes aren’t consistently “normal” but they definitely have spurts of normalcy :-)

I can’t tell you what a huge encouragement this is to me. All along, I’ve wanted her eyes back the most. They represent the complexity of my sweet Anne – and I saw slight glimmers of herself in her eyes today. Thank you Jesus!

Please continue to pray:

  1. For wisdom for Eric and me and Anne’s doctors regarding her medications.
  2. For Anne to continue to improve in all the areas I listed last night: eyes, moving her head, strength in her legs, control of her hands, and less tightness in her elbow and ankles.
  3. For God to preserve Anne’s cognitive abilites and allow her to speak.
  4. For God to be glorified in this journey and for us to trust Him.

-kathryn

Never Again!!

Yesterday, the doc talked me into giving Anne a miniscule dose of that med that makes her so irritable. That was NOT a good idea. Poor Anne… she doesn’t tolerate that drug AT ALL. And she will definitely NEVER have that drug again :-)

Please pray:

  1. That Anne will improve in the following areas: tightness in the left arm and right ankle, tracking of her eyes, turning of her head, speech and eating.
  2. That we will be encouraged to hope in Christ and not in Anne’s circumstances.

Hopeful… -kathryn

Spirit Night at Chick-fil-A

Tonight, Anne’s school had a scheduled “spirit night” at the local Chick-fil-A. It’s a way to raise money as 10% of the revenues from the evening go to the school.

Well, most of you know that ACCA decided to donate all of the proceeds to Anne – which is a major sacrifice! On the surface, this just seems like a bunch of nice people doing something nice for a local family (for which we are very thankful, by-the-way :-). But I see much more… I see a slice of God’s kingdom on earth, and I LOVE IT!

God’s kingdom is filled with paradox. Check this out…

-When the Chick-fil-A operator caught wind of Anne’s story, he offered two locations with extended hours and also included drive-through. His response to the possibility of large numbers of people: “We’ll be ready.” That’s humble strength and joyful service…

-The leadership of ACCA gladly donated their spirit night for our family. We’ve only been in this school one year. It seems foolish for the school to sacrifice so much for our little family, but “God chooses what is foolish in the world to shame the wise.”

-This whole idea came from an ACCA student: a girl that the world would think of as insignificant. She’s not powerful, wealthy or famous. Kelsey’s just a girl with a LARGE heart. God multiplied her idea into a community EVENT – which is a witness of what the body of Christ should look like: a unified body that loves sacrificially and joyfully.

-Lastly, and the most paradoxical of all to me – is the little girl that has caused this kind of unity. Anne is a shy little girl that has a hard time looking people in the eye, much less speaking to them. And now, with her brain injury, she is truly: “the least of these…” How can this awkward and shy little girl make such an impact? “God chooses what is weak in the world to shame the strong.”

I had the honor of going to Chick-fil-A to see this picture of God’s kingdom. What I saw was Jesus. Humility, Compassion, Joy, Self-Sacrifice, Love – these are the characteristics of our precious Saviour – who personified the paradoxical nature of God’s Kingdom on earth… Isaiah 11:6 talks about this mystery…

“The wolf shall dwell with the lamb, and the leopard shall lie down with the young goat, and the calf and the lion and the fattened calf together; and a little child shall lead them.”

I’m thankful to see a little child lead us into prayer and dependence upon God as never before…. -kathryn

Prayers & Praises

Praises for today:

  1. Anne ate a chicken finger today and held it with her right hand!! I couldn’t believe it!
  2. She seems to be moving her eyes a little more. She is able to move them more into the center at times.
  3. Her right hand has increased in dexterity and reduced in tremors.
  4. We think she said “mama” today!

Pray:

  1. Anne’s verbal ability increases rapidly so that she can tell us why she is hurting or what foods she likes.
  2. Anne would have increased perseverance and grit. We know she has been discouraged at times when we tell her how great she is doing, and she she retorts back a loud disagreement: “Nuh huh”.
  3. The docs are worried that her left elbow may become frozen since her arm is flexed close to her body and rarely moves.
  4. Pray that Anne is able to eat enough for her feeding tube to stay out. i am having a hard time feeding her enough – she isn’t very crazy about eating, even though she is hungry. Kathryn seems to do a much better job on the feeding thing.

-eric

Anne is a different child today…

Thanks to a savvy nurse, we deduced that one of Anne’s medications has been making her irritable. We refused that medication today – and VOILA, Anne is calm, smiling and laughing again. Her eyes are moving a bit more and she just seems more alert and focused.

She’s also back to her mischievous self… This morning, she pulled out her feeding tube! She’s taken all of her medications orally, and I’ve been stuffing her with food, so they won’t put it back in. Pray that she eats ALOT :-)

I just talked with Ms. Debbie who’s staying with her tonight. At night, they attach a small sensor on her toe to monitor pulse and blood oxygen levels. According to Ms. Debbie, Anne kicked and rolled around and worked the sensor off of her toe – and then laughed at the nurse when she came in to see why all the monitors were showing that she had no pulse…

Oh my! That’s my Anne!!! That’s the kind of irratibility we want – the kind that makes you fight to get better – not the medically- induced kind that makes you scream all day long!

What a good day :-)

Please pray:

  1. For wisdom for us and the doctors regarding her medications and treatment strategies.
  2. For Anne’s language to come back and improve – she’s not talking as much since we dropped that one med.
  3. For Anne’s eyes to continue to improve
  4. For the tightness in her left arm and right heel to improve.

What a journey God has us on…

We are really in the same place as Kathryn’s last journal entry yesterday. . . . able only to turn and hope in Jesus, and very much NOT able to hope in Anne’s circumstances or condition . . . . hoping and praying for God’s healing hand, but not able to see progress for today. . . . but it is only 1 day. . . . . sadness for little Anne. . . .

Little Anne is still very agitated today, crying unless she is laying in mommy’s lap. She still can’t really use her eyes as they are set to one side. Her head is even more turned to the right and her left hand is even more tightly clasped.

But in the same day, we have had tears of joy from being lifted up by our sweet friends and family that have visited or called or or emailed or given gifts for Anne – all of whom have grabbed us up and physically supported us when our legs are weak. i have been taught so much by all of you – God has been remolding my heart through watching you reach out to me. . . .

And then i remember . . . . Anne DID do a great thing today – while having her weight supported, she initiated about 30 steps with both her right and left legs! God always seems to daily give us (our daily bread) a reason to hope in Him. Anne has only been in rehab for 1 week and two days. . . . there is so much to be thankful for. . . . my despair comes much too quick!

-eric

Where do we place our hope?

The tension between staying in the present and having hope for the future is difficult.

The present is hard. Anne still can’t move anything but her right hand and her right quadricep. She can’t roll over in bed or turn her head. Her eyes are stuck to the right and she cries most of the day.

Yes, she is getting stronger and making great progress, but the future is uncertain – so placing our hope in an unknown future is like building a house on sand…

So where do we place our hope? I echo Peter’s words from John 6, “Lord, to whom shall we go? You have the words of eternal life, and we have believed, and have come to know, that you are the Holy One of God.”

Our hope is in Christ alone.

Please pray:

  1. Anne has a really bad sore throat. She is refusing to swallow, so she is not eating and is even more agitated than ‘normal’. So pray for her throat to get better.
  2. Continue to pray for Anne’s total healing, and all of us to trust in God’s good character and mercy toward our family.

Good night – kathryn

1st fruits…

Well, Anne has officially completed her first week of rehab. Her estimated stay is 4-6 weeks…

Yesterday, I got to visit with a mom whose daughter had a worse brain injury than Anne’s – and now she’s toddling all over the rehab floor – as normal as can be.

She encouraged me to hold on to the small things that Anne does because they reveal her potential. So let’s list the ‘small’ steps that Anne has accomplished this week :-)

  1. She says, ‘yeah,’ ‘uh-uh,’ and ‘more’ consistently. And then today, my mouth about hit the floor when her therapist asked her to say, “marshmellow.” AND SHE DID! amazing
  2. She is eating pureed food well and is starting on crunchy foods.
  3. She is sitting well with assistance and can sit a little while totally unassisted.
  4. She’s standing with assistance for 15-20 minutes at a time.
  5. She’s consistently initiating steps with her right leg, and has initiated with her left leg a few times.
  6. She’s grabbing and ‘exploring’ with her right hand.
  7.  She smiles, laughs and cries (alot :-)

I would say this has been a pretty good week!!! These are the “first-fruits” of God’s work in Anne. I’m encouraged to press forward – while remaining grateful for God’s mighty work in the present.

You are our GOOD God. THANK YOU JESUS for preserving Anne’s life and bringing her this far. We pray for her total healing, but trust that you will finish the good work you’ve started in Anne. We know your plan for Anne is good. We are humbled by your mercy toward us. Please help us to trust you moment by moment. We love you! Amen

Screaming & Schedules

Well… I’m exhausted :-)

We have four hours of therapy, resting-foot-splint schedules, active-foot-splint shedules, hand-splint schedules, pureed diet eating schedules, weaning feeding tube schedules, dressing, diapering, teeth brushing – and bathing schedules.

And all of this while Anne is in her “agitated phase” (aka: SCREAMING AT THE TOP OF HER LUNGS phase :-) I’m laughing right now – that keeps me from crying ;-) Seriously, the fact that Anne is crying 75% of the day is a GOOD thing. It means she’s coming back to us – but that doesn’t make it any easier…

The doctors, therapists and veteran-rehab-parents all assure me that this really is just a phase. Meanwhile, God has supplied energy and endurance. “Your right hand has held me up, Your gentleness has made me great. You enlarged my path under me, so my feet did not slip” Psalm 18:35-36.

Please pray:

  1. For Anne to push through this “agitated phase” to a place where she is less disoriented and has greater communication skills (in other words – please, God help her to speak!)
  2. For Anne’s tremors to subside so she can have greater control of her hands.
  3. For patience for all, and
  4. Finally, for her total and complete recovery.

-kathryn

Praying for His Presence

For those of you who have the devotional, Jesus Calling, today’s entry was very awesome!

My sweet friend, Paulette, gave me that devotional and as I read this morning, I thought of both my circumstances and hers – as her husband has significant surgery today.

I’m praying for both of us to leave the future in God’s hands, and to experience His caring presence in the present!