TheraSuit

Reminding Myself…God is in Control

The other night I dreamed that Anne could walk. I woke up that morning overwhelmed with joy which was quickly replaced with disappointment, but in the end, I decided to land on “hopeful.” In my half-awake state, I heard Anne calling from her bedroom, “Mommmm! I need to go to the bathroom!!!” Bleary eyed, I walked to Anne’s room, only to find her – not in her bed – but in the hall, right outside the bathroom. She can scoot to the bathroom, but she has never done it in such a purposeful way before.

I’m a firm believer in the sovereignty of God. If I look at the seemingly random events of my life through the lens of God’s sovereignty, sometimes I see patterns. That morning, Anne’s purposeful scooting to the bathroom immediately after my dreaming of her walking – seemed like a pattern. I would never go so far as to think it was a promise that Anne would walk! (The Bible doesn’t promise that!!) But…I do think it was a loving reminder that God sees the longing of my heart and cares. I was encouraged as I reflected on God’s sovereignty and could feel myself relax as I thought…God is in control.

I’ve also been encouraged by Anne’s progress in therapy. Her walking has dramatically improved. She is standing much straighter and crouching much less. Her endurance has also improved. The first day, she was able to stand for only 2-3 minutes. Today, she stood for 15 minutes. She also walked for 20 minutes (with support) on the treadmill. Her step size has increased as well as the speed of her walking. Also, she is propelling and steering her new walker independently. We typically see these kinds of dramatic improvements a few months after therapy. To see so much drastic improvement during therapy is very encouraging! See…God is in control!

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Anne with her new walker

Anne’s last day of intensive therapy is Friday. This session has flown by and seemed much easier to manage than in years past. That’s due in part to good friends who have offered to drive Anne for me a few times each week. I have been lifted and sustained by the body of Christ. Another reminder that God is in control!!

Looking forward, Anne will start three months of therapy in CHOA’s multi-million dollar robotics lab in February. She responded very well to their Physical Therapy program 1 1/2 years ago. So, I’m excited to see Anne continue to gain strength and stability this spring. I’m thankful that I can trust God to provide all that Anne will need exactly when she will need it. Afterall, He is in control ;)

From the Intense to the Mundane

Anne finished Intensive TheraSuit therapy this week…fifteen sessions spread out over four weeks. She worked on strengthening her left side….

and in the process, gained confidence to aid her in balance and walking.

Anne LOVED the therapy saying, “I’m sad it’s over, Mamma.”

In some ways, I am too. The past two months I’ve been hyper-focused – first on planning for suit therapy (lots of logistics involved in caring for Canon and Kate while I’m in therapy with Anne) – and second on pushing through the crazy schedule.

We’ve had lots of help…co-workers provided meals, family and friends provided rides for Canon and Kate…we were even blessed with anonymous Christmas gifts for our entire family! God has provided through the love and care of His people.

But now that the hustle is over, I find myself looking forward…there are no intense schedules to coordinate or complicated logistic puzzles to solve. Only the normal grind of everyday life.

I wonder what extraordinary things God will do in the midst of my ordinary schedule? He loves to surprise me with unexpected gifts – sweet joys in the middle of gray, winter days. In the middle of the mundane, I will watch for His blessings :)

We wait in hope for the Lord,

he is our help and our shield.

In him our hearts rejoice,

for we trust in his holy name.

Psalm 33: 20-21

Happy 2016!

Summer fun and Summer challenges

This morning marks the first time ever (for our “new Anne”) that she has gotten out of her bed all by herself! She was bored and impatient waiting for me to come up to get her – so she got out of bed, scooted herself over to her bookshelf and started to play. This is what I found when I came upstairs this morning!

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I was THRILLED! This mess represents desire, determination, motor planning, independent thinking, and courage with a bit of mischievousness. These are new qualities that we are seeing in Anne this summer. She seems to be restless – like her brain is craving new challenges and stimuli. This is a good sign of growth and progress – but it is also challenging for the whole family! We feel like we’re cleaning up after Anne ALL. THE. TIME.

Fifteen minutes later, Anne’s room looked like this:

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I’m happy to clean up after Anne if it means she’s making progress… But she does keep us busy!

Next week, Anne begins three weeks of intensive TheraSuit therapy. This could not come at a better time as she is ready to be challenged! If you think of us, please pray for energy for both me and Anne as we tackle the taxing schedule of intensive therapy. Thank you for your support and prayers and for sharing in the joy of Anne’s long-term recovery!

Therapy Milestones

Right now, I am sitting in the waiting room of a therapy center located an hour away from my home. I’ve been here every day for the last three weeks. Anne is finishing up another round of TheraSuit Intensive Therapy. I’ve been juggling my job, Anne’s therapy and normal mom duties. I’m done.

Each day in this waiting room is full of adventure. I’m here for hours every day. Kids with walkers, canes and scooters move past me, and typically they are crying. The same therapists deal with screaming kids every day – patiently pushing them past their comfort zones. There’s something refreshing about being around special needs kids. There is no pretense. What you see is what you get…

They are kind and compassionate. They have grit and determination. When they’re mad, they yell. When they’re happy, they squeal. It’s so simple – and real.

Anne is doing fantastic during therapy. Her strength, energy and balance have all improved since the last session. She cries, yells and squeals just like every other kid in therapy. She’s a mess. But she’s a good mess :)

Therapy will end in another hour or so, and Anne and I will start the hour-plus commute home. Tomorrow is the last day, and I can’t wait!

Sometimes I wonder if all the therapy is worth it. I wonder how much to push – how much time to sacrifice. But then I look at the progress…

Look at the difference between these two videos. The first is of Anne last year. Look at how wobbly and weak Anne’s legs are. The therapist is giving maximum assistance, holding Anne with one hand and moving Anne’s cane with the other. The second video was taken today. Anne is with the same therapist, but she is so much stronger!! Anne is able to manage the cane independently and the therapist is holding her lightly for balance/safety. The difference is amazing.

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2015

I guess we’ll keep taking one day at a time – resting in God’s strength to get through today and trusting in His faithfulness to provide the strength for tomorrow :)

TheraSuit Year 3: Wrap Up

Anne finished her third week of Intensive TheraSuit Therapy strong!

It will take a few months for Anne’s muscles to recover and heal, but if the results are similar to the last two years’ sessions, then we’ll see a big cognitive and physical boost 3-4 months from now.

Thank you for your prayers for Anne. She stayed healthy (even though all of her family battled severe colds), and she stayed strong!

Here’s a short video of her walking in the “suit” with a cane at the end of the 3rd week… Notice how she introduces herself at the end of the video. Anne never meets a stranger :)

Anne’s Four Year Milestone

Today marks 4 years since the accident. On April 13, 2010, Anne woke up as a healthy, able-bodied, 5-year-old child. At noon, she was almost killed in an automobile accident.

Every day since then is a gift for which we are profoundly thankful.

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Lately I’ve been tweeting some of Anne’s more pithy sayings. Here are a few of my favorite tweets:

Anne finished up her second week of Intensive TheraSuit therapy on Friday. The end of the second week is definitely the most difficult. Here is a video of her walking with a cane late in the day on Friday. Her legs look like noodles. She is SO tired!

We are so thankful for our precious Anne and we can’t wait to see what incredible things God does with her life!!!!!

 

TheraSuit Year 3: Week one update

Anne had a fantastic first week!

I think Anne has finally reached a point in her cognitive recovery where she realizes she has a brain injury AND she understands she has to work to get better. Because of this realization, she is determined in therapy. I’ve never seen Anne work so hard with such a great attitude! I’m so proud of her.

One of the ways TheraSuit therapy works is through the unique design of the “suit.” Every movement is more difficult in the suit. It’s sort of like a baseball player taking practice swings with weights on his bat. When he steps up to the plate, the regular bat feels lighter and easier to swing. Similarly, when Anne performs all of her exercises in the “suit,” she is able to strengthen so many muscles at once – making it easier for her to move without the suit. One highlight of the week was Anne’s ability to walk on the treadmill. She walked 20 minutes on the treadmill while wearing the suit! That’s a huge accomplishment for Anne.

Another praise from the week was that God preserved Anne’s health. This is truly miraculous as Kate, Canon and Eric have all fought off horrible colds with fever and severe congestion. Please pray that Anne and I continue to stay healthy throughout the next two weeks.

Thank you!

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TheraSuit therapy 2014: Day 1

I’m writing from the waiting room of the therapy clinic. This is a brand new clinic to us with new therapists and a long way away from home. But TheraSuit is worth the drive.

Anne has done AMAZING today. Not one tear. Not even a complaint. Nothing but determination and a GREAT attitude. Honestly, I’m shocked!

Tomorrow will be harder, but I’m encouraged by the excellent start!!

I have two pressing prayer requests:
First, we are still waiting on the last step for insurance approval. Please pray that approval would come TOMORROW! If we do not receive prior approval tomorrow, we will have to suspend therapy until we receive it.

Second: Kate is getting over a really bad cold. If Anne catches Kate’s cold, Anne would miss therapy until she recovered – which is typically 5-7 days for Anne. Please pray that Anne would stay healthy!

Thank you!

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 :)