Category Archives: physical therapy

Caleb’s Progress Update

2013-04-13 12.22.40I haven’t posted much about Caleb lately. I never did follow up with information about the Therasuit therapy that he went through in San Antonio.  Honestly, it was a bit of a  disappointment. Caleb did not want to cooperate, and while everyone has those moments, his moment went on for a long while.  He was just not interested in working.  He did get some benefits – the work that was done teaching him where his middle is was helpful, and we’ve never worked on that before.  He learned to use a treadmill in a walker, and that was good, but I am not sure it translates well into daily living activities.  I do think we will make another run at it in the future, but most likely not for at least a year.  He needs to decide that he wants to go, and to cooperate.

It’s interesting that it seems like the skills we (“we” meaning the adults in his life) focus on, many times don’t improve, but other skills will just appear.  For example, I think he’s  using the potty 90% of the time now.  I had given up on that, but he decided to do it. We’ve focused on balance  and strengthening his torso and I do see some small improvements there, but he still is not able to walk independently.

However, his affected arm, his left one, has improved a great deal.  He could not open that hand or stretch it out, and he has had occupational therapy for years to help him use that arm and hand. He was able to pick up six blocks at occupational therapy this week, and then move them across the middle of his body and put them down on purpose.  It was a proud moment. Here’s a quick video of him using that arm and hand.

The best thing this week though was definitively the meeting I had today with the school district team -diagnosticians, therapists, teachers, and the principal met with me to review the plans for next year and go over the results of tests they’ve run.  Caleb does not always present well, because his speech is hampered by cerebral palsy, and he’s also easily distracted.  So I understand why there was some suspicion of developmental delay by the school.  His score on overall functionality was unfair however – many parts of the test involved movement, or experiences he couldn’t relate to due to his disability. However, his IQ has tested out at perfectly average. He did very well on the riddles section of the test, and really impressed the tester with his wit and charm.  He is still qualified for special ed because of his health impairment, but the shadow of developmental disability is now gone.  Hooray!

A Better Day

reeves rehab3Prayer works. Thank you, everyone who is praying. Today at Caleb’s therapy session, he cooperated. He made good progress today.  Today he spent a long time suspended, while laying on his back. He is hanging from bungy like cords in this photo, and the straps you see on him laying on are cotton cloth. He was feeling pretty insecure there. He has been suspended there before, but the therapists have just been swinging him or wiggling him and he hasn’t been asked to do anything himself while he’s there.  Today, the therapist at his head pushed his head crooked, off to the side, while the therapist at his feet held him straight from the torso down. Then, Caleb was asked to put his head back in the middle.  He moved his head, but it was still off center when he thought he was done.  The therapists were telling me, that’s where he thinks, where he feels, center is for him. They told him, no, this is center and moved him to be perfectly lined up. Each time they tried it, he got closer, and on the 30th try, he was correct. He moved his head to mid-line on his body. Yes, I said 30th try. He is doing 100′s of repetitions of many exercises. They kept going after he got it right.

Once they got him to consistently go back to center with his head, they worked on his lower body. He had to use his stomach muscles and obliques to move his legs back to mid-line.  Again, he didn’t know where mid-line is. I think it was at around 50 tries -we lost count – that he was able to find the middle correctly.  He had a hard time understanding how to move at all, since he couldn’t use his leg muscles at all, the way he was rigged up.  That is the point though – alignment is done with your torso and head, not your legs. That is part of why thisreeve rehab 4 therapy method is effective.  What does hanging in the air holding your body straight have to do with walking? Everything, apparently.

Caleb also had his first use of a treadmill today.  One therapist was on each side of him, and he was set up in this walking frame thing you see in the picture.  They picked up his legs and made correct steps, in the correct rhythm, and offered less and less help as the exercise went on. He seemed to like this, which has to do with prayer in my opinion.  Maybe a little has to do with being surrounded with lots of fun attention. I also brought Skittles today.  Yesterday he wasn’t going to cooperate for anything, though.  So mostly it’s prayer.

He also has the chance to use a vibrating machine called the Pro Elite Wave.  It’s a big plate like thing he stands on, and it vibrates, and it reduces tight muscle tone and relaxes him. He did not care for it earlier in the week, but now he was asking to go do it. He thinks it looks like a big bathroom scale, and he wants to get on the scale for his cool down now.  This is good.

On the home front, we got a lot of stuff moved out for the yard sale at home today.  We were able to box up more things for the move, and we used up 3 rolls of packaging tape.  We also ordered Whataburger in a moment of weakness, and we ate it with thankfulness and joy. I had a good day and saw the hand of God, and it was breathtaking.  That’s a subject for a whole other blog post, and for today, this is enough.  Thanks for praying.

Greetings from University Hospital

reev rehab2I am having a hard time blogging this week.  I just don’t have the time.  It was challenging to think about committing to 3 hours a day of Physical therapy for Caleb ; more so at a location an hour away from the house; and then, to have the house sell and be moving and having a yard sale in the middle of the three weeks of therapy, well, that’s just ridiculous. But that is where we are.

It took four months to get Caleb approved by Medicaid and on the schedule at University Hospital’s Reeve Rehabilitation Center in San Antonio.  They are offering the Therasuit Method of cerebral palsy rehab, and they are willing to accept Medicaid to pay for it.  That is fabulous – and rare.  The centers in Austin and Houston are private pay only, and they have waiting lists too.  The opportunity is really too good to pass up. I am overbooked, but Abigail found out how to get on the wifi at the hospital, so here I am, able to blog while I am waiting for Caleb’s therapy. I also was able to pay my bills online. Yay for Abigail! Yay for online book keeping!

Therapy started on Monday, and it goes for three hours a day.  Normally, Caleb is cooperative and follow directions at therapy.  I have seen him rebel about therapy only twice ever before this week, but Caleb is not doing well at therapy this week.  He is silly, he is distracted, he is whiny, and he says he is “sore” (he isn’t) and”  I don’t feel well” (he is just fine) and he just is not giving this the reeves rehabattention it deserves. He’s more passive that I’ve ever seen him.  This is just not a good time for him to be having a bad day. Therapy is not going to work if he isn’t going to cooperate, so I am asking for prayer that Caleb will get his act together and that he will be able to benefit from this awesome opportunity.  We all need prayer to get through this three week stretch.  Chelsey is pulling extra duties, my parents are picking up some slack at the house, and the big kids are having to more than pull their weight. Carolyn fixed dinner for everyone tonight, Justin priced the yard sale items and moved some big items, Abigail went to Bible study, my parents took Joshua to his horseback riding lesson, Paul got Josh washed and into the bed, Matthew packed up several boxes of clothes, and Chelsey and I went in to therapy with Caleb.  That’s how today worked, but tomorrow is yet another challenge. Again, prayers appreciated, that we can get it all done without losing our minds or the remote control, that Caleb cooperates at therapy, and that he learns how to walk without equipment.

An Abbreviated update of our crazy surprising happenings

at dellIt’s been quiet here on the blog. That means that I am too busy to get on here and post, and life is crazy. Oh, where to begin.

Carolyn was inducted into the National Honor Society at the high school.  She’s ranked 3 out of 500 in her class right now, but still she didn’t qualify for NHS last year, and wasn’t picked for Unicorn Handler, because there was an error on her transcript that showed wrong grades and had her ranked at  at 30- something at the close of junior year. We are super proud of her – and advise for you  parents, check those grades and transcripts carefully, every year, because schools make mistakes. I regret that I I didn’t catch it sooner and she lost her chance to be a Unicorn Handler, but now the NHS thing is fixed. She’s busy filling out more scholarship applications.

Justin is living here at home again.  He did not recieve a departmental scholarship, and he didn’t get the GPA needed toj pic keep his academic one at DBU. We might have spent the big money and tried to tough it out, but now he’s thinking he doesn’t want to go to graduate school, and wants to just get his RN degree and go to work.  So he’s doing prerequisites at San Antonio College and working at a pet sitting business. The house is full again.

Matthew is still the reigning first chair French horn and is playing Recreational basketball int eh Spurs kids league. Joshua is playing too, and Paul and Justin are coaching Joshua’s team.  Joshua started piano lessons (with me) and is also taking horse riding and is now able to ride without the instructor on the horse as well.  Joshua and Matt both made honor roll.

Caleb is busy with 9 therapy visits a week, horseback lessons, and this week he was in at Dell Children’s for a Botox treatment. I am scheduling him for a three week intensive PT tune up – 3 hours a day, 5 days a week, for 3 weeks in San Antonio. It’s Therasuit therapy – click here to learn more. I hopefully will post more when the time comes in March to bring him there.

Abigail and I are busy planing her schedule for next year. She will graduate next year, which is early, but it’s not that hard to accomplish, and she wants to. She’s done two math classes this year (Geometry and Algebra 2) and so if she does double English next year, she’s good.  She will be my only entirely home-schooled child. Strange to think that I may only have one year of homeschooling in my future, but who knows what the future will bring.

Speaking of the unexpected future, in a very odd twist of events, we have received an offer to buy our house, even though it’s not listed  for sale. It’s a very nice offer, and today we are having an inspection. If all goes well, we’ll be moving, at the end of March.  The details and work this involves keep a person from blogging on the computer, as you can imagine.  We don’t know where we’ll move to yet.  We’re working on that. It will be good to have a house on level with the ground for Caleb’s sake, if all this works out, and hopefully with less upkeep. This is a big house on an acre, for those of you who don’t know us in person.  It’s a lot of work, but it’s a great house, and hopefully the next family will be blessed by it. The day they came to see it, Sasha was sick and she exploded all over Justin and inside my car.  It was an incredible mess.  that’s the way it goes, isn’t it. They liked it anyway, and the real estate broker knew who to call to clean the mess out my car – it was so nasty equipment was needed.   She’s all good now. The dog, the car, the broker – whichever you thought I meant by “she”. :)

So Paul and I are meeting in the parking lots of piano lessons and basketball practices to discuss and plan our situation. We also (Paul mainly) got our taxes filed this week.  Talk about time consuming and frustrating; Justin did his as well, and there was a lot of,”Are you kidding me?!?!” from him too.  2013-01-16 21.31.11 2013-01-25 19.27.49 2013-01-25 19.27.59 2013-01-26 08.32.15

 

 

 

 

 

 

 

 

round button chicken

A Step Forward for Caleb – Literally!

Caleb has been in our home for almost three years.  He’s a year and two months out from his Selective Dorsal Rhizotomy. He’s had hundreds of hours of therapy, and his progress has been slow and steady.  Yesterday, he had his first “Step” without a walker.  In the walker, a step is not the same as what typical people do.  The shifting of the weight, the balancing on one foot, the use of the upper body, are not involved in a walker like they are when a person is just walking by themselves.  He has made countless attempts, and this is the tenth video from this one day working on it.  But in this video, he picks up one foot.  Praising God, for  a fabulous team of physicians, an army of therapists, a family of many siblings, a team of personal caregivers, and  a spunky undeterrable 5 year old,   for this step today.

Stumbo Family Story

Standing up

2013-01-28 09.53.35Today started off as a not so great Monday.  There was oversleeping and lateness, complaints about the menu for breakfasts and lunches, and one of the kids was in need of a doctor’s visit, so I was on the phone bright and early for that.  I was not expecting this to be a fun day or a great day. Just a crazy one full of details and schedules. The kid with the doctor’s appointment is fine and got a prescription; everyone arrived to school and returned home; really, it all turned out ok, but the unexpected part of the day makes a person stand up and take notice.

Caleb has to ride along with me for the drop offs at schools on Mondays and Wednesdays this semester, since the scheduling didn’t work out for his caregivers to be here on those days. That adds to the time it takes to get things done as well, but he is a cheerful driving companion most of the time, so it’s really ok.  But it means that Therapy has to be done later in t he mornings on those days, and today his PT, Alicia, came at 9:15, after we were back home, which is not great because he’s usually better first thing in the mornings. I was running around starting the laundry and fixing the kitchen messes I made fixing all those unappreciated meals.  She was working with Caleb, and then she had an idea.  Instead of giving support for standing from the front and blocking out his knees, she moved him to stand with his back on a wall to help him balance.  The first few attempts didn’t go well, but he learned his balance very quickly and look what happened :

It’s been a year and three months since his rhizotomy surgery. This has been a long time coming, and we believe still greater things are ahead for him. Go Caleb Go!

Caleb stood up

It’s been a long time coming.  Caleb just really has struggled with learning to stand.  He wants to throw his head back, when it needs to come forward.  He wants to swing his arms, when he needs them to push down.  It’s been thousands of tries and thousands of repetitions of instructions. Today was the first time he followed all the instructions, and he popped up.  Once he’s there, he doesn’t have balance to stay there, but, hey, we’re excited.  It’s another step in the right direction.
It’s been almost a year since his surgery, and he is still making gains in abilities. He always does better when Alicia, his physical therapist, is working with him. I am praying he keeps on doing this right even when she’s not here.

At the end of the video, he says that he’s a Jedi. Of course.

Stumbo Family Story

Underwear Grace

This week, Caleb announced that he wanted to wear underwear.  I would suppose that it’s obvious that Caleb isn’t potty trained yet.  He can’t get to the potty by himself, and his surgery last year wiped out his neurological system below his mid-back.  So he had to begin again with all skills below the surgery level, from toe wiggling to learning how to pee again.

His desire to wear underwear was somewhat of a shock, but hey, I’m all for it.  Seemed like progress to me.  On his first attempt, he was wet in the first hour, and he was so upset about it.  He cried and wailed, “Why me?”, and he’s never had a pity party before.  Then he became angry.  He wants to know why he can’t potty like other kids, and why he can’t walk.  It’s been a rough week here. I thought I would have until he was 10 or 12 years old before we got to the hard questions.  We’re here now.

His physical therapy this week has been combative. His PT thinks this is going to be good in the long run, though.  This school year he has been included with other preK students, and she’s thinking that is how he noticed that he is disabled.  Getting mad about it can be helpful in doing something about it, says his PT.  Kids that care, work at getting better.

I am very grateful that God provided me with some grace and direction this week.  This past  Sunday, our pastor taught from the Bible story in which Jesus fed the five thousand.   I’ve heard that one preached many times, read it many times, but this  teaching  is different.  What if the disciples had run down to the groups of people to serve BEFORE they went to Jesus to get the miraculous food? That would be silly, but that’s what many of us Christians are doing in our daily lives.  We need supernatural strength and wisdom, and we don’t go to Jesus to get it many times.  We’re often just looking inside ourselves or to outside sources (Google!  Yes I’m talking to you and me!), but not to Jesus.  So I was sitting on the floor with a crying wailing Caleb and I knew I had nothing to offer him in myself.  I do, however, know Jesus, and I know that Jesus has this well in hand.  I can tell Caleb I don’t know why he’s in a mess, but I do know that Jesus has provided for him not to be alone in it.  We will do this together, and we don’t have to do it in our own strength.

This morning, Saturday,  he’s in a better mood.  He’s watched an episode of Blue’s Clues and is trying his underwear again.  So far so good, but I am sure there will be many more accidents, many more falls, and much more grace before he can be called potty trained, before he can walk by himself.  I am thankful neither of us has to do this on our own.

Walking with the TAOS!

Caleb got his new walking system, the TAOS, way way back in June.  He has really struggled with it.  It is designed to  take  his arms and throwing his upper body momentum out of the equation.  When we walk, if we were to throw our upper body forward first, it wouldn’t work out well. That’s the plan that Caleb has always used in his walker, since that’s what works for him.  However, he can’t get free of the walker and really walk because of this habit.  Habits are notoriously difficult to change.

So when we put him in the TAOS, he threw his body incorrectly and nothing happened. He gets  frustrated, we get frustrated, he sags and complains. His Physical therapist has taken to sitting on the frame and pulling on Caleb’s arms and legs to show him the pattern he needs to use.  It’s tedious and he is unhappy. We have tried putting yummy candy on a table three feet away and hoping he will learn how to do it. He just gets madder when we’ve tried that. That’s pretty much the way it has been for June, July, and August.  Until this morning!

Today, he finally did it.  Was it the months of trying, the new technique with his PT, or is it the horse therapy? Who knows, and really, who cares.  He figured out how to move with appropriate walking gait. Very exciting.

A Great Day, and some Updates

Thanks for the questions and concern about Paul’s knee.  He is doing very well and he only has one more appointment for physical therapy to go.  He has full range of motion, and yesterday he commented that his knee feels better than it has in a very long time.  He’s good, and we’re shopping for an elliptical for the house for both of us to use to work on staying in shape, since our running days are mostly behind us.  OK, maybe it’s more accurate to say,  getting back into shape. He has been a model patient. It’s been a very pleasant convalescence, because he’s had a great attitude. He only called physical therapy “physical torture” once or twice.

Justin had his crown repair started this week too.  It is not a pleasant thing, but the temporary is holding well and he will have the permanent one in soon. His basketball season is over and so now is the time to get that tooth fixed.  Again. Oi. I will spare you the pictures on that one.

The days have just been packed around here.  It’s time for Justin and Carolyn to study like crazy for the AP exams.  Projects have been due, Abigail has piano recital next Saturday, and Carolyn takes her first run at the SAT this Saturday too. Matt and Abigail did Stanford testing at the homeschool Co-op, and Carolyn has endured TAKS.  Soccer season is in full swing, and Josh and Matt are on teams with the local soccer association. We’ve had out of town guests stay with us too.  Good times, but not much time to blog.

Today, Carolyn was delivered to the high school to practice  AP testing at 8:30; Justin went to work at the baseball fields then too.  Josh, Paul, Caleb and I ran down to the soccer fields for Josh’s game at 9:30; Paul coaches Josh’s team.  Then it was off to pick up a car at the repair shop,  a quick trip into Costco, and home for lunch.  Then, Matt has his soccer game.  We are tired.  But, not so tired that we didn’t get the kids together and go to Schlitterbahn this evening.  It’s opening day at Schlitterbahn! We didn’t have much time to hang out in the lazy river, but the time we did have was marvelous.  Good friends to visit with, and it was a taste of the promise of the summer to come. Those swimming pool and Schlitterbahn days that make a person say, “God Bless Texas”, are just around the corner.