TheraSuit: Year 2, Day 15

Anne completed all three weeks of TheraSuit Therapy, and she did GREAT!

By Day 15, most of her screaming and temper tantrums had been replaced with laughter and determination. Her left leg is so much stronger than before. And she is soooo close to being able to stand from a sitting position all by herself. Once standing, she is maintaining her balance for much longer than before suit therapy.

The great thing about Suit Therapy is that as her muscles heal over the next month, we will see continued improvement. It is such a great program!

…If only insurance would cover it. We are still waiting on a decision from our insurance company on whether they will cover this therapy. Please pray that God would work a miracle, and somehow our insurance would cover the 3 weeks of therapy!

This is a video of Anne on the last day. She is doing single-legged squats (while being distracted by a fun game). This is the exercise that caused the loudest screaming in the first few days. She’s having a ball in this video. The improvement is remarkable :)

TheraSuit: Year 2, Day 7

It’s the 2nd week of TheraSuit therapy, and Anne is starting to feel the effects. Her muscles are tired, and she is struggling to work through the fatigue so she can get stronger.

Today, Anne was screaming… “I’m ready to go home!!! Take this stupid suit off of me!!!! I don’t like you anymore!!!”

And then in the same screaming voice she would yell, “Ok. I will work some more. I’m ready to work some more!!!!!”

And then she switched to scream, “Leave me alone. I want to go home!!!!”

And so it continued… back and forth, back and forth, until she finally finished her exercises…And then she looked at her therapist and said, “I’m sorry I was mean to you. Can we hug and be friends again?”

Sweet Anne. I pray her hard work will make her stronger in both body and spirit!

TheraSuit:Year 2, Day 2

Anne has really struggled today.

I am sitting where Anne can’t see me, but I can hear her. I know she doesn’t feel well. She woke several times last night with itchy eyes and a stuffy nose. She’s tired. But she’s persevering. Through tears she is relenting to the therapist’s commands. She’s had grit today. I’m proud of her.

I’ve been reading through Jeremiah as I write my daily bible365blog.com posts. Jeremiah complains a lot, and he has every right to! The people of Judah want to kill him because they hate his message of Judgment…but God is firm with him. In Jeremiah 15, after God rebuked Jeremiah for his complaint, God built him back up with a strong-as-rock promise:

And I will make you to this people
a fortified wall of bronze;
they will fight against you,
but they shall not prevail over you,
for I am with you
to save you and deliver you,
declares the Lord.
I will deliver you out of the hand of the wicked,
and redeem you from the grasp of the ruthless.” (Jeremiah 15:20-21).

God works this way with us. It’s very similar to Anne’s therapy. The therapists ask her to do hard tasks – for her good. She complains, and they are firm – yet encouraging. She perseveres, and consequently – she is made stronger.

May we have the courage to persevere through God’s therapeutic work with us :)

TheraSuit: Year 2, Day 1

Anne begins her 2nd round of TheraSuit Therapy today. So far, so good :)
2013-06-10 10.14.15

Update and Prayer needs:
We finally have her seizures under control. She is on a different medication which seems to have very few side effects. At her current dosage, we rarely see seizures – and even when we do, they are extremely mild.

The only side effects from her seizure medication seem to be occasional intolerance for movement and increased emotional outbursts… NOT a good mix for TheraSuit therapy!

Please pray that somehow, these side effects are minimal and she would be able to grit her teeth through the discomfort and actually enjoy the process. Right now she’s screaming, but she’s working through it. We covet your prayers :)

Silly musings about flying

Sometimes I just want to fly – but I’m grounded. I’m grounded by responsibility. I’m grounded by disability. I’m grounded by lack of vision, purpose. I’m grounded by a small heart closed up in my small world of caring for my small children.

But Anne’s not small. Her heart is large. She loves. She laughs. And she longs. She’s grounded too. Yet she flies. How does she do that?

In my years of being a Christian, all I’ve ever wanted is for my life to count for something larger than myself. To multiply my small efforts and make a difference in this world. I’ve longed for purpose. I want to matter.

I look back at my life – and I’ve tried to fly. I’ve pursued things that seemed to matter. But God always pushes me back down to earth – back to my home – back to my family – back to sitting with Anne. The Anne who can’t walk – who is absolutely dependent for every significant movement. This Anne. This life. Does it matter? I think God wants to show me that it does. I think He’s trying to teach me. I think I’m a slow learner.

Somehow, I need to learn to fly while grounded. For now, I’ll ask for help to obey in the moment. And maybe one day, I’ll look back and see that each step of obedience was a slow ascent to flight. And I’ll laugh. And so will Anne. And we will fly together.

Pray for Anne…

June 2013’s prayer requests:

Please pray for Anne…

  1. For stamina for me to care for Anne over the summer, and stamina for Anne to work hard during therapy this summer,
  2. For our insurance to approve additional therapy visits to cover TheraSuit Therapy,
  3. For Canon and Kate to surrender to the sacrifice necessary to help me care for Anne, and
  4. For the eradication of seizures, the balance and strength to walk, and the focus necessary to read!!!!

Thank you!

Yeah for Summer!

i-TXWc6Dc-XLAhhh… Summer. It’s been a wonderfully relaxing week – especially compared to the craziness that surrounds the last month of school.

Part of that craziness involved me dealing with medical providers and insurance to work out Anne’s therapy schedule for the summer. As is typical, God worked it all out perfectly – but just the opposite of how I had planned! God always knows best.

So Anne will do another round of TheraSuit therapy in June. And then she will have serial casting done in July & August.

Anne is doing GREAT! I don’t know how to describe her improvements… I just know she’s better. She’s less impulsive, more relaxed, less agitated, more focused. Eric and I are both extremely grateful for our Anne’s progress.

Anne’s Orthopedically Impaired Special Ed. class had an awards ceremony at the end of the year. Anne won several awards! I think she won four… “Most Improved in Writing,” “Outstanding Work in Phonics & Reading,” “Outstanding Work in Sight Word Recognition,” and the one I’m most proud of was “Most Improved Student in Primary Grades.” Woo Hoo!!! Anne had a fantastic year, and we are so proud of her!

So Proud!

So Sweet!

So Sweet!

So Proud!

We love our Anne!

We love our Anne!

And the best news we received at the end of the year was that Anne’s AMAZING Para-pro will be returning next year! I’m so thankful for Mrs. Bush :)

Anne loves Mrs. Bush!

Anne loves Mrs. Bush!

Happy Summer! I’ll post updates during TheraSuit Therapy. Thank you so much for your prayers for Anne!

Pray for Anne…

May 2013’s prayer requests:

Please pray for Anne…

  1. As we look forward to summer, that we would be able to schedule activities and therapies that would prevent Anne from regressing both physically and cognitively,
  2. For our family to be an encouragement to Anne while we are at home together this summer. Anne has been sad more lately.
  3. For the eradication of seizures, the balance and strength to walk, and the focus necessary to read!!!!

Thank you!

The wisdom of Gandalf

Eric and I were watching The Hobbit tonight. My favorite parts of both the movies and Tolkien’s books are the scenes with the elves. The land, the respite, the wisdom, the peace. Every time the characters leave the elven city of Rivendell, I am sad. I long to stay.

Rivendell is the setting for our favorite scene from The Hobbit. Gandalf’s words resonated with both of us. I think because they echo the way of God’s Kingdom…

Sauron believes that it is only great power that can hold evil in check. But that is not what I have found. I’ve found that it’s the small things, the every day deeds of ordinary folk that keeps the darkness at bay. Simple acts of kindness and love. Why Bilbo Baggins? Perhaps it is because I’m afraid. And he gives me courage.

In many ways, Anne gives us courage. Her simple smile. Her sweet laugh and quirky wit. They keep us going. And just as Galadriel assures Gandalf… we know we are not alone. God is our helper. He is our Rescuer. He upholds our very life!

Behold, God is my helper;
the Lord is the upholder of my life (Psalm 54:4).

Milestones

A friend kindly wrote to me today… “Thinking of you this week.”

I had to stop and think about what she could mean… And then I remembered, “Ahhh. Saturday is the day.”

Yes, Saturday will mark three years since Anne’s accident. April 13th becomes easier with each passing year. The pain of losing Anne becomes more dull, and the joy of gaining Anne becomes more evident. God is good!

I’m actually hostessing a baby shower on April 13th. I can’t think of a better way to spend the day than surrounded by friends celebrating a new life. God’s mercies are new every morning!

And while we’re on the subject of milestones, I just published my 100th post on my bible:365 blog. If I taught kindergarten, I would do something fun like… string together 100 paperclips or eat 100 M&M’s (ugh). But I’m not a kindergarten teacher, so I just had a cookie ;)

Happy 100 posts to me! And more importantly… Happy 3 years of enjoying our new Anne!

Hangin' with the boys

Hangin’ with the boys

Face painting with Canon, Kate and cousin Isabella!

Face painting with Canon, Kate and cousin Isabella!

A picnic in the front yard!

A picnic in the front yard!

We love our Anne!

We love our Anne!