Day 5 of Therasuit therapy

We’ve finished our first week. Anne has done amazingly well.

Specifically, she is less frightened and has more confidence; therefore, she is putting forth EFFORT! She turned to me several times today and asked, “How hard would you say I’m working? Just regular hard, or SUPER hard?” She is taking pride in her work ethic – this is something I haven’t seen before.

Here is a video taken while Anne is walking on the treadmill. There are no tears on day 5. She trusts that she will not fall, and she is having fun experimenting with the bungees. She is moving her right foot on her own. The therapist is just helping Anne with foot placement. Anne needs help with her left leg, but she is moving it much more than she did on Day 1. We are all proud of Anne (even Anne is proud of Anne – which is the best news yet!)

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Day 1 of Therasuit therapy

Anne had her first Therasuit session today. (She will have 15, four hour sessions over the next three weeks.) It was intense. I think she cried for over half the time… not because she was in pain – just because she was MAD. This therapy is hard work, and Anne does not like to work hard. That’s actually one of her biggest obstacles. She puts forth little effort, and when therapists demand more, Anne gets mad.

My prayer is that one day she will channel that stubbornness into getting better. In the interim, we’ll just have to listen to her cry. It’s sooooooooo good for her!

Here’s a rough video of Anne walking on the treadmill. She walked a total of 15 minutes with two short breaks. You can hear her crying :-) Don’t worry, she’s not in pain. It’s just her way of complaining!

14 more days to go…

School update

I think I’ve shared before how grateful I am for Anne’s school… but it bears repeating :-)

We had Anne’s annual IEP meeting last week – which is basically a time when all of Anne’s teachers and therapists gather in one room to review Anne’s progress and set new goals for the year. I always cry at these meetings… and I always feel silly when I do – but I can’t help it. I cry when I’m grateful, and I’m just so grateful for all the people that seem to be “for” Anne. They are truly rooting for Anne to do well, and I feel they give their absolute best to help her reach her potential.

Anne receives Physical, Occupational and Speech therapy at school. She is in a regular kindergarten class, and she has her own para-professional to assist her in all of her school tasks – from writing to walking. Her para-pro is an answer to prayer. He (yes, I said “he”) is a recent college grad who has a degree in phys. ed. …He wants to coach – but he had to settle for being a para-pro… to a difficult seven-year old girl (who LOVES him – oh yes. Anne loves him.) He is so steady. He has endured much abuse from Anne – biting, hitting – but he never loses his temper – he just hands out the appropriate consequence. He notices subtle behaviors in Anne that others would easily miss – both good and bad. He takes the initiative to do more than what is expected to help her reach her potential. He really is impressive!

Anne’s primary special ed. teacher is so dedicated. I feel like it’s her number one goal to provide the best services for Anne. Her therapists are all great, but Anne especially loves her Physical Therapist, Ms. Lynn. Somehow Lynn is able to push her without Anne getting too upset. Today she walked farther than she ever had… and she is starting to propel the walker a few steps by herself!

How much farther Ms. Lynn?

Finally, the counselor at Anne’s school recently reached out to me. She is going to include Anne in her Rainbows program (which helps kids cope with grief, feelings of being different, etc.) She told me that when Anne came to Nickajack, she took the initiative to read all of Anne’s CaringBridge site – just to familiarize herself with Anne’s history. She’s been following Anne, and determined that Anne’s self awareness has improved so that she would benefit from her Rainbows group. She’s right… It is the perfect time. Anne’s counselor was just named the NATIONAL SCHOOL COUNSELOR OF THE YEAR. Now that’s amazing!!!! The AJC  ran an article about her. You can read about her here.

Anne is doing so well in school… but one of the reasons is because she goes to a great school and she is surrounded by great professionals! Go Nickajack!!!!

Good Report

I asked Anne’s special ed. teacher if I could share an email she sent me today. I was encouraged by what she wrote!

I wanted to let you know that I spent a little bit of time today with Anne in her classroom. And she did a great JOB!! With assistance in walking to the front where Ms. S was modeling how to write a sentence, Anne wrote the word go. With hand over hand assistance she did the g and independently when told to make a circle did the o. Then with assistance Anne answered two questions during calendar time: the name of her school and also one other question, which I forget. She was cued (and little bit of assistance) to raise her hand and then called on. Anne needs some reinforcements to not talk out (combination of the cue cards and some verbal reminders) But, she is making great progress. I was so proud of her. :)

Last week, her school physical therapist wrote me that Anne walked farther than she ever had before (with a walker and assistance for propulsion). So that’s awesome!! On Friday, her kindergarten teacher pulled me aside to encourage me that she thought Anne was doing really well in class.

Anne has made a great start to the school year. We continue to be both deeply grateful for what God has restored in Anne and humbly hopeful that He still has more healing to do. …Thankful for today and hopeful for tomorrow – that is a good place to be!

Thank you for your continued prayers!!! -kathryn

Summer begins

Summer vacation is here!  I’m excited to have Anne at home, and I’m anxious to have Anne at home :-) It reminds me of how I felt when Anne graduated from the Day Rehab program last October. I was tempted to feel anxious about bringing Anne home for good – but I had a sense that God was working on Anne’s behalf in ways I couldn’t see… yet! After one week at home, God brought both a Speech Pathologist and a Physical Therapist across our path. God continues to use those women in Anne’s life. So I’m excited to see what He has in store for this summer…

Especially, because I think Anne’s on the brink of something big. On the surface, it appears as if she’s regressed… She’s more orally fixated, more fidgety; her impulsivity seems to be off the charts. But in the past, what looked like regression was really something new awakening in Anne’s brain, and it just took her time to sort it all out. I’m hoping this is the beginning of another amazing work of God in Anne!

I also pray that I have the wisdom to balance rest and therapy. I’ve found that Anne makes large strides in her recovery after periods of rest.

So please pray for our time at home. It’s tough for me to balance all of my household responsibilities with caring for Anne at home AND spending time with all three children. It’s a bit overwhelming for me frankly… So, pray for energy and patience for all of us Jacksons this summer!  Also, please pray for Anne’s continued healing… less impulsivity, improved cognitive abilities – and for her feet. Her poor feet, especially her left foot… I wrote a whole entry about Anne’s feet last fall, and her left foot is still as weak as ever. I pray earnestly for God to heal the part of her brain that controls her feet.

Thank you for staying close to our family in prayer this summer!

Sick days

This has been a hard week …but a good one. Anne started to get a stuffy nose on Sunday night – which turned into a very bad cold. She’s been up alot during the night, coughing and crying because her throat hurts. Neither one of us has had much sleep. I tried to take her to school on Wednesday, but after her PT session, it was obvious that she was miserable, so she hasn’t been back. I took her to the doctor yesterday, and thankfully, she just has a cold, so we’ll wait for her body to fight it off. Meanwhile, both Kate and I have caught Anne’s cold. Fun, fun.

But, there’s always an upside to everything :-)

  • I’ve enjoyed my times in the middle of the night with Anne. She is so sleepy that she is able to totally relax while I hold and rock her. That’s a special treat for both of us.
  • When I took Anne to school on Wednesday, I was able to stay and observe her PT session. Even though Anne was miserable, I still got to see her walk with her cane. The PT helps Anne move her cane forward.  She then directs Anne to lean down on her cane and move her left, then right foot. The PT encourages Anne to take those steps by herself. Sometimes Anne can take two steps and balance well, other times she will fall backwards (and the PT will catch her).  Anne does really well when the PT holds her left hand. The improvement from the last time I saw her is amazing. She went twice as far, and she had much more fluid movements. Anne moves her legs really well; she just needs to improve her balance.
  • Lastly… Today Anne said, “I need to go tee-tee.” There was something about the way she said it that made me believe her, so I carried her to the potty, and voila – she went!!!! This hasn’t happened since the accident. She will tell me when she needs to have a bowel movement, but she’s never been able to tell when she needs to go tee-tee. So as with every new skill, it will take a while before it becomes consistent, but I’m encouraged that there might be a day when Anne doesn’t need diapers! Woo-Hoo!

Now, I need to take a nap!

Tonight’s service for Anne…

What a difference a year makes! This time last year, people were gathering at church pleading for God to spare Anne’s life. Tonight’s celebration service was a stark contrast!

Anne climbed the stairs to the platform at the front of our sanctuary (with the help of her former PT) and said into the microphone, “I made it!” She went on to answer questions from both Pastor Paul and Pastor Pete. She stayed on topic and seemed to really enjoy being on stage in front of everyone. She asked at one point, “Wow, can they hear me all the way in the back!”

A year and a day ago, if you would have told us that Anne would be on stage – talking into a microphone – and enjoying it…. Well, we wouldn’t have believed it. This is the girl that refused to sing in children’s choir because she was too afraid to stand up in front of everybody – and who cried in Sunday School because she had to go to the bathroom, but was too shy to tell her teacher… Wow!

The church staff did an amazing job putting together this service. The music was awesome, and the words shared were extremely meaningful.

Thank you to everyone who came. We had friends and family come from hours away to celebrate Anne. The Sanctuary was full of people we love and who love Anne. It was a glorious time.

Good progress report

Both Anne’s teacher and PT at school read this journal. Typically, after I post an entry expressing my discouragement, they will try to encourage me the next day with all the progress she is making. I’m always touched by their thoughtfulness.

Well, this past Monday, the school PT went one step further and invited me to observe Anne’s next PT session. I guess she figured that if I saw Anne’s progress with my own eyes, I might start believing it :-)

I went today, and Anne really is doing well. Her focus is better. Her trunk strength and balance have improved tremendously, and her walking has improved. I really believe that in a few years, Anne might be able to walk independently with a cane. Wouldn’t that be amazing!

Her OT is also very positive about Anne’s progress. She is making active movements with her left arm. Again, her concentration and effort are improving, as well as her stamina.

Lastly, her classroom teacher has shown me most of Anne’s classroom work from the last few months. She’s more purposeful in her coloring. In other words, it’s not pure scribble scrabble, but you can see that she is making an effort to color a specific object.

Now, if I can learn to stay encouraged based on God’s faithfulness and character instead of Anne’s progress, well then I might receive a good progress report too!

Thank you for your continued prayers.

Hippotherapy

1-20-2011

Anne had her first hippotherapy session today. (Hippo is greek for horse.)

Hippotherapy will help Anne’s balance, coordination and her ability to know where she is in space. When the horse moves, Anne has to use BOTH sides of her body to balance. I’m very thankful to have a hippotherapy clinic so close to our home.

I didn’t know how Anne would react to being on the horse… but she did GREAT! She wasn’t afraid and was genuinely excited. The therapy session definitely challenged her – especially when they turned Anne around so she was riding backwards on the horse. I look forward to seeing how she responds to more therapy sessions!

Relentless

I’ve been a bit discouraged lately about something (that will probably sound strange) …Anne’s feet. I’ve always taken feet for granted. I find myself watching people’s feet now – how without even thinking about it, people can place their feet flat on the floor – without their ankles rolling or without going up on their tiptoes. I watch Kate jump – and I’m just amazed at the complexity of the brain – working the muscles and controlling the balance just so – to actually jump and land – solidly on flat feet.

Anne’s feet are always pointed in and down. She can’t stand without braces to hold her feet at a 90 degree angle and to keep her ankles from rolling. It takes a minimum of 10 minutes for me to stretch her feet to fit in her braces. I can’t just get Anne out of bed and stand her up – no, I have to carry her everywhere until I have the space in my day to stretch her feet out.

Why do I mention this? Well… Anne’s feet represent to me the relentlessness* of disability. It never ends. It’s constant and always with you.

As I was complaining about Anne’s feet to her (awesome) PT this morning, she gently reminded me to be thankful for Anne’s feet… “They’ve improved, Kathryn.” She’s right. I should be thankful :-)

But here’s what I’m really thankful for. I’m thankful that I have to care for a child with a disability. I’m thankful for the relentlessness of it – because it is a physical manifestation* of who I am and who I have always been – completely dependent on God.

Before the accident, I could deceive myself and live as though I didn’t need God – live as if I were not broken and completely dependent on God. We are ALL broken and in need of a saviour, but it’s so easy to live independently of God.

Grieving and caring for Anne is so challenging that rarely am I not aware of my need for Him. And you know what is amazing? Yes, Anne’s needs are relentless – they are always there, but God is more relentless. He pursues me. He comforts me. He comforts Anne. He gives us strength, joy and perseverance. He helps us stay in the moment and not be overwhelmed by the future. HE IS OUR EVERPRESENT HELP IN THIS TIME OF TROUBLE. He is near. He is my God. That is what I am thankful for!

Happy Thanksgiving :-) -kathryn

*A few thoughts from this post came from Stephanie Hubach’s book on disability called, Same Lake, Different Boat . I borrowed the word ‘relentless’ from Stephanie’s book. I really resonated with that word… Also the idea of disability being an outward representation of our inner brokenness came from Same Lake, Different Boat . Thanks Stephanie!