Preparing for school

Our summer is winding down. Anne goes back to school next Wednesday (8/7)!

Anne responded so well to serial casting that she only had to have three weeks of casts instead of six, so she will be able to go to school cast-free (serial casting is a technique that increases the range of motion in Anne’s ankle).

This is the first summer that Anne seems brighter and sharper at the end compared to the beginning. Her amazing use of language keeps us in stitches. She uses her words in such a clever and witty way.

The other day, Kate was working through a book of riddles, and Anne was able to figure out riddles which stumped Kate. Anne has excellent reasoning ability. She’s still so smart.

Her challenges are her short attention span, impulsivity and cortical visual impairment (CVI). (CVI is a broad term for visual impairment caused by a problem with the brain, rather than with the eyes.) These are all huge obstacles which Anne must overcome in order to read.

Fluent Reading and Fluid Walking. These are our two dream goals for Anne. These goals are so long-term, I feel like there are a hundred short-term goals to be met to get there. But we’ll keep plugging along… little step by little step.

God continues to supply exactly what we need precisely when we need it. Never less, and never more. We pray for the faith to trust him in the moment and leave the future in his hands. In the meantime, God uses Anne to give us so much joy! We are so grateful for the gift of her life!!

Anne’s summer

I think this has been Anne’s best summer yet. Anne makes good progress when she’s consistently challenged, and we’ve worked hard to make sure she has lots of challenges…

TheraSuit therapy + Church camp in June. Serial casting + reading tutoring in July. And when you add in trips to the pool and Six Flags – well, we’ve been busy.

I confess, I don’t typically have the energy for this type of schedule… I’m a read-a-book-at-home kinda gal. But I think God has given me an extra boost. That said, I’m thankful we only have three weeks left before Anne starts school :)

But she’s doing well. And so are the rest of us.

Oh! And Eric’s company generously decided to cover Anne’s TheraSuit therapy – but they said this would be the last year, so we’ll have to pray about what to do next year… But for this year, she’s covered!!! Thanks for your prayers and encouragement… they are sustaining us!

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 1

Anne begins her 2nd round of TheraSuit Therapy today. So far, so good :)

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 :)

Yeah for Summer!

Ahhh… 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 Sweet!

So Proud!

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!

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

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

Face painting with Canon, Kate and cousin Isabella!

A picnic in the front yard!

We love our Anne!

Brief Update

I’ve been a bit discouraged lately. I get so frustrated with myself when I’m discouraged – because it means that I’m relying more on my circumstances than on the word of God.

I think the main issue that has been discouraging me is Anne’s behavior. She’s just been rascally lately. Very contrary and sometimes… mean. There are a few reasons for this…

Anne has frontal lobe damage. The frontal lobe controls executive function of the brain. This is the area that helps you use good judgment, promotes impulse control and helps you organize and plan. A healthy frontal lobe is crucial for independence. Anne does not have a healthy frontal lobe. It’s just extra hard for her to have self-control and make good decisions.
Also, Anne’s self-awareness has improved. This is good. It is just more evidence that her brain is continuing to heal – but it also makes Anne sad and frustrated.

So, we keep plugging along day by day. When I get discouraged and overwhelmed, I have to force my eyes heavenward and focus on the present instead of worrying about the future.

Worry… I worry that I’m not doing enough to help her heal. I worry that I’m wasting precious opportunities to work with her because I’m tired. I worry. I worry.

What does Jesus say about worry? Oh yeah, it doesn’t help ;) And it’s also not of God. So, when I worry, I pray. That’s all I know to do right now!

Anne is amazing :)

Sometimes I look at Anne and I’m struck by the magnitude of the brain damage. She’s just so impaired in so many ways. But then other times, Anne amazes us…

Yesterday, Anne stood up from her chair at the dinner table all by herself. That was amazing. Then I put her on the sofa and asked her to stand up, and she did it! The whole family was amazed!!

Anne said this morning… “I want a dog. And I think we should name her “Grace” because I bring Grace to other people and my name means “Grace.” That was pretty amazing.

But what she did last night was really amazing…When Eric puts Anne to bed, he always reads to her from the children’s bible, “The Jesus Storybook Bible.” In fact, Eric reads the same bible to Canon and Kate when he puts them to bed. And at times, Anne is able to connect to the stories on a deeper level than Canon and Kate.

Eric was reading a story (that he had never read to Anne) from the New Testament about the field of great price. Remember the story? A man learns that there is treasure in a field, so he sells everything he owns in order to pay the price for the field. In the middle of the story, there was a question: “What is God’s Treasure?” Anne immediately piped up, and said, “God’s children.” Eric, amazed, continued to read the next line of the story…”God’s children are God’s treasure.” And then Anne offered, “The price God paid for his treasure was his Son’s life.”

God seems to have given Anne a special ability to understand his Word. We think that’s… amazing!

Continued healing!

Anne is doing something amazing! She is starting to crawl.

I sound like a first-time mom talking about her 7 month old :-)

Seriously, last summer, when Anne was in Therasuit therapy, one of the exercises they did with Anne was to get her on all fours on the treadmill and physically move her hands and knees in a crawling position. Not only could she TOTALLY NOT do that movement on her own, but she screamed the entire time, seriously, she screamed.

Now, she can transition from side sit up to all fours (or I should say three’s – because her left arm cannot straighten all the way to the floor) and she can move her knees… right, left and then she falls. But she’s doing it!

I’m continually amazed at the complexity of the brain and how just how much damage Anne sustained. A healthy brain controls the muscles necessary for crawling without the person even “thinking” about it. It’s taken Anne over two years of healing to regain the (limited) use of some of those muscles. But the healing is still happening. And it’s exciting :-)

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