Conversations!

Today was exhilarating and heart-wrenching all at the same time…

I had many conversations with Anne – yes, I said CONVERSATIONS!!!!

Me: “Anne, it’s time to get in your chair.”
Anne: “There is no reason for me to get in my chair.”
Me: “Yes there is. You need to go to your physical therapy session. You need to work really hard and do your best. Ok?”
Anne: “Ok, mama.”

Me: “I know it’s frustrating when you can’t stop your hand, Anne. It’s ok.”
Anne: “IT’S NOT OKAY!!!!!!”
Me: “God has a good plan for you, Anne, and He is helping you to get better.”
Anne: “I AM NOT BETTER!!!!”

Anne: “Mama?”
Me: “Yes, Anne?”
Anne: “Do you really love me?”
Me: “Oh yes Anne. Now more than ever.”

It was an amazing day. But my heart breaks for Anne to see her struggle with her mind and body. Please pray against discouragement and frustration. Pray that Jesus will be close to Anne.

Her largest struggles right now involve control. She can initiate an action with her hand, like scratching her nose, but then she can’t stop it. This is extremely frustrating for her. When’s she frustrated, it’s hard for her to control her words, so she still cries alot.

Sweet Anne has come so far – we are just praying she makes it through these next hurdles. Thank you for praying with us.

On the way home tonight, Canon said, “Mommy, this was the best day of my life!” Amen to that :-)

More grateful than words can express…. -kathryn

Anne SPEAKS!

WOW! This morning while feeding her breakfast, grandmom asked Anne: “why are you leaning to the left in your wheelchair?” Anne responded: “I have no idea”. We all gave her cheers and HOORAYS! She then said it several more times to other questions.

This morning she also said four new words: “Me-Ma”(our name for grandmom), “OK”, “Your name is Canon”, and “Daddy”. Wow, what an amazing answer to prayer!! So many have been praying for her speech!

Then Canon sang the song “5 green and speckled frogs” while laying next to her. Then Anne started saying other words that i couldn’t quite understand.

Her words are still quiet and a little garbled, but they are still WORDS!! Praise God for His healing for Anne!

Keep praying for more speech!!

-eric

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

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