CIRU

Discharge date…

We have a discharge date… two weeks from today: 6/17.

We are both excited and nervous. Eric is mostly excited; I am mostly nervous :-)

I’m overwhelmed by the prospect of bringing Anne home as she is now. I want her to be so much further along, but she does have two full weeks. Alot can happen in two weeks!

I think it will be good for the whole family to have Anne home. Canon and Kate are starting to tire of being away from both home and mommy so much. And I think Anne will benefit from being at home.

Anne’s next step after she is discharged is Children’s Day Rehab program. She’ll be in a rehab facility (just across the street from the hospital) five days a week from 9am-3pm. It is a drop-off program that is like school with much structure and group activities. We still don’t know if or how much our insurance covers, so please pray that God will provide either through insurance or other means.

In the interim, we’re praying for God to give Anne a major “boost” (Canon’s word) in her healing, so that caring for her at home will be more joy than burden for the whole family. Specifically that she would be able to:

  1. Sit completely unassisted.
  2. Improve her cognitive/thinking abilities so she can focus for longer periods of time and be able to calm/organize her thoughts so she can verbally express herself more clearly.
  3. Gain greater control over her right hand – so she can feed herself, and maybe even color a little bit :-)

These are my hopes for her before she comes home. She’s already come so far – Two weeks ago she hadn’t spoken her first sentence and her eyes had just started to move. I pray God surprises us in these last two weeks!

Thank you for walking this journey with Anne and our family.

-kathryn

A Good Day!

Her physical therapy session was her most challenging to date. Her therapist really pushed her, and Anne rose to the challenge. She tried her absolute best to do EVERYTHING her therapist asked of her even though it was extremely difficult. She was so brave, and I’ve never been prouder of her!

Her speech therapist took some time to evaluate her word retrieval abilities. It was tough to watch Anne look at a picture of a cup and not be able to remember the word. But again, she tried her best and was able to remember more than half of the words she was asked.

Tonight, she became more conversational. It’s kinda like a switch came on, and she just started talking more loudly and using more words.

The brain is God’s creation, and it is amazing. Little Anne is building new pathways. Little by little, God is helping her to heal.

We are very grateful. -kathryn

A Difficult Day

Anne cried a lot today. It’s hard to know why… I guess that’s what makes it so difficult :-)

Days like today remind me that Christ alone is able. He alone is able to heal Anne, to knit her brain back together, bit by little bit.

He alone is able to strenghten her weak knees and make our paths level and straight. He gives strength to the weak and heals the brokenhearted. That’s a good thing – because that describes me… weak and brokenhearted – but not without hope :-)

I know that today is just a moment in a much bigger picture. God is weaving his good plan in and through Anne and our family. Our job is to wait and trust as He does His work.

Let’s pray for a peaceful night. Sweet Anne needs one.

-kathryn

Happy Birthday Kate!

Last night went well. Eric decided that Anne was probably in pain. So after some pain meds and the idea to turn on her favorite music… Anne calmed right down and slept without a peep all night. God is good to answer our prayers :-)

Today was Anne’s little sister Kate’s 4th birthday!

The birthday girl :-)

We had a Dora-the-Explorer party at the hospital. Many of my friends pitched-in to help as we explored all the play areas in the hospital. It was great fun.

Dora's map

Kate's cake

My prayer two weeks ago when I started planning Kate’s party was for Anne to be able to participate with us. My vision was Anne riding along in her chair – following the action with her eyes, smiling and talking a little.

That was a lot to hope for two weeks ago… That Sunday (5/16) she was crying most of the day (b/c of too much medicine), her eyes were fixed to the right, and aside from an occasional smile, she was virtually unresponsive.

Today she participated just as I envisioned. She interacted with her friends and I think genuinely enjoyed Kate’s adventure of a party. It was wonderful!

Anne with her friends

Please pray:

  1. For Anne to get stronger both cognitively and physically. Anne has to work hard to answer questions about a picture book and she still can’t sit unassisted. She has a lot of hard work ahead of her.
  2. For us to continue to stay in the present – remaining dependent on God and trusting in His good plan for Anne.
  3. For Anne to have a profound awareness of God’s love and care for her.

Happy Birthday Kate!!!

5-30-2010

 

-kathryn



A day of extremes…

5-29-10

This morning, I’ve never seen Anne look so good! But, this afternoon, Anne started to regress.. We don’t know why. Her left leg started shaking alot and she is unconsolable – extremely fussy.

Poor Eric is staying with her tonight. Please pray that God gives Eric insight into what is troubling Anne – and for God to help them both cope tonight. Pray for rest and peace.

God is worthy to be praised when Anne is good. God is worthy to be praised when she is not so good. He is our Sovereign Lord.

-kathryn

Hope…

Anne has done amazingly well following her surgery on Tuesday. It’s hard to pinpoint specifics – she just seems more herself. She’s talking more, holding her body and head straighter – she seems to have more strength in her legs and her hand is not quite as crazy-acting…

For the first time, it feels safe to hope. I’ve always had hope – but only in God’s good character. Now, God is allowing us to see His healing hand in Anne, and that inspires me to hope for greater things to come.

Our days are not so heavy. The heaviness of her constant crying has been lifted. She’s now pleasant. She uses all of her manners (yes mam / no mam) and even has a sense of humor.

The heaviness of uncertainty has been lifted. God has fulfilled our deepest desires for Anne… allowing light to shine in Anne’s eyes and allowing her to speak. I tell her, “God is helping you to get better and better everyday.” She always responds, “Even today, mommy?” “Even today,” I say :-)

Finally, the heaviness of grief has been lifted. They encourage parents to post pictures of their children on the outside of their doors. After three weeks on the rehab floor, I’ve come to a place where I can look at a picture of Anne (pre-accident) and not grieve. So now her door has lots of pictures :-)

Her door with pictures

Jeremiah 29:11

We still have a long way to go on this journey, but I’m thankful for God’s grace to lighten our load a bit. Anne’s smiles and constant chatter produce in us a profound gratitude for God’s mercy. To God be the glory.

Please continue to pray:

  1. For Anne to pass through this phase of oral fixation. She puts EVERYTHING in her mouth. I know it’s a phase, but I need patience to wait through it :-)
  2. For Anne to continue to get stronger. She still can’t sit unassisted.
  3. For Anne not to be discouraged and to lean on God in a deep way.

So thankful!!! -kathryn

Anne is back in rehab!

5-26-10

She is tolerating the pain well and so far has only needed Tylenol (no morphine).

All of her doctors have said that she is doing GREAT! She’ll rest today and then go back to her full therapy schedule tomorrow.

Anne had a sign above her bed that read, “Bone flap missing on right side.” I can’t tell you how good it felt to TEAR THAT SIGN DOWN! Wee-Hoo!!!!

-kathryn

Anne’s out of surgery

The procedure was very successful. She will be in the ICU for a night or two, then hopefully back to rehab. She is experiencing pain now. She is saying OUCH alot and crying some. She is reaching for what is bothering her on her head – the many, many, many staples holding her scalp together.

Kathryn and i were so worried that she would not be herself for some time after surgery. . . . but she is already talking a little, holding our hands, and opening her eyes wide to watch us!! PRAISE GOD.

The primary nurse during Anne’s iniital stay in ICU is her nurse today – she was amazed at how great Anne looks and was blown away when she heard Anne speak!

Please pray:

  1. that there will be no complications from the surgery – no infections, no issues with the bone replacement, etc.
  2. that she would be able to get back to her rehab schedule tomorrow or the next day 
  3. that she would not be in any pain

-eric

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