3. Rehab Floor (CIRU)

Surgery tomorrow…

Anne is having a great day …singing along in her music therapy session and riding the bike in her physical therapy session. I think it’s been her best day yet!

Tomorrow is a huge milestone for Anne. She is having surgery to replace the bone flap that was removed the day of the accident. (The neurosurgeon removed a part of her skull to allow for brain swelling and sent the ‘bone flap” to a bone bank for preservation.)

Even though her doctor says this is a simple surgery, and kids usually do great afterwards…. IT’S STILL BRAIN SURGERY :-) But we are excited to get this behind us and get back to rehab.

Please pray that there will be no complications from the surgery (scheduled for Tuesday at 1pm). After one night in the PICU, Anne will be back at rehab on Wednesday. We are so thankful for this next step in Anne’s recovery!

Thank you all! -kathryn

More Conversations…

We’ve been having this conversation alot today…

Me: I love you Anne
Anne: No you don’t (with a smirk on her face)
Me: I most certainly do love you!
Anne (laughing): Well, I don’t love you.
Me: That’s okay. I still love you.
Anne: Actually, I do love you.

Please continue to pray for Anne’s control over her right arm and hand. Her poor hand has a mind of its own – repeating the same movement over and over again. It reminds me of her tremors – which are GONE! So, I’m encouraged to pray through this phase too…

Hoping for a good night with Anne -kathryn

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

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