Therapy update

Just a quick update, for those who want to know. We saw Patrick’s physical therapist this morning. I was hoping she’d be pleased by what she saw, and she was. This is good news. It means he doesn’t need a brace quite yet.

After a week of twice daily stretches, Patrick is beginning to put his right heel down when he walks. When he’s going slowly and deliberately, he can do it almost every time. When he tries to go fast, it’s back up onto his toe and he starts to trip and veer to the left.

The therapist says this means that it’s almost certainly a matter of tone. For whatever reason, the muscles in that foot are pulled tight. When he thinks and controls it, he’s able to get them to stretch into ways that allow him to walk. When he goes fast, he can’t control it and the foot is pulled up and in.

So for the forseeable future, we’ll keep doing exercises to stretch out the muscles so that he doesn’t have to fight as hard to control them. Kinda like how you stretch out a balloon before you blow into it. The more we stretch, the more flexible the muscles will be.

He still loves walking, though! All day long I wander around putting walking toys in positions so that he can find them and push them across the room. Last night, we went out for a walk around the sidewalks in front of our house. For the first time, I didn’t take a harness to hold on to and he tripped and fell a few times, but most of the time got up and kept walking. Now we’ll just hope he’ll keep trusting me.

And when he does start walking, I’ll probably be sorry that I pushed so hard for this. After all, right now I spend all my time following him around and putting things back that he pulled down or out. Walking just means he’ll be quicker in his path of destruction.

Walking . . . Well, almost

When I started Patrick in heavy duty physical therapy 3 months ago, he was crawling like a wounded soldier.. on his belly with one leg dragging. The goal we set then was for him to be able to stand and walk. Last week, it’s like the little lightbulb flicked on and he’s brave enough to be putting some serious effort into learning to walk.

It started when he found a toddler walker (the medical kind) in the physical therapy office. His therapist pulled it out so he could play with it. Before we knew it, he’d made a successful lap around the hallway in the clinic. When we got home, all he wanted to do was stand and walk around the furniture.

The next day, I weighed down his little cart from Ikea with 10 lbs of flour and away he went.. Walking the cart across the room with me holding onto him by his harness to keep him from falling. Before long, I decided the space was too small, so we went outside. He pushed his little Ikea cart with me holding onto him for balance all the way from my house to the school parking lot behind us.. We sat down and rested after a couple of laps in the parking lot. I thought he’d quit when he saw our house, but no.. he kept going 3 houses the other direction before sitting down to rest, then getting up and trying to take the cart back home. It was at least half an hour of walking and about half a block.

The next night, he saw his cart standing there again, climbed up and pushed it across the room all on his own. The first several tries he leaned too far into it and had to basically run to keep up, but with some practice, he was soon able to control his speed a bit.

He still has a ways to go. His little cart tends to veer to the left and Brian pointed out that he seemed not to be taking as good of steps with his right leg. He walks on his toe and kind of turns his foot inward to take a step.

I pointed this out to his physical therapist yesterday. We talked about some of the possible causes. (Effects of the cardiac arrest, sensory issues, or the scar tissue). I remembered kind of out of the blue being told that the deep wound caused by an IV infiltrating the vein in his ankle when he was a month old could cause problems with walking. (This kind of out-of-the-blue-but-makes-sense memory I sometimes think is the Lord pointing us in the right direction.) In the end, the therapist explained that knowing the cause doesn’t change the treatment.

She did some evaluation exercises and found that he has limited range of motion in the foot, leg and hip. Now I have exercises to do with him at least twice a day to help stretch the muscles. We hope that this will improve things, but if not, she may order a brace for him to wear while he’s learning to walk to help correct the position.

Knowing this as he first starts walking is a HUGE blessing! We can make a minor adjustment now that will help him down the road. This is exactly why I have him in so much therapy right now.. So that we catch these little things that are results of his illness while they’re easy to correct.

This was a good reminder to get this week as I added occupational and music therapy this week and am trying to decide if I proceed with a feeding therapist as well. As if I weren’t already busy. The occupational therapy has made a difference, though, after just one visit. See, we think Patrick might be “sensory seeking”. In other words, he craves big physical input. The therapist has taught me some techniques to use to fulfill that craving, leaving his brain and body free to focus on other things.. Like walking or looking at books or learning new ways to play with toys.

It’s a little thing, but I think I’ve seen improvements. He sat next to me on the bench in church on Sunday and just looked at a book for a good 15 minutes. This is remarkably unwiggly for him.

And so, we keep plugging along.. doing all we can to keep Patrick learning and growing now with every moment he feels well enough to do so. I’d really like him to be walking before his transplant. I think that if he’s not walking when he goes in, that it will take him a long time to get well and strong enough to get back to where he is now. So if we have to walk to the school and back every day to accomplish that goal, that’s what we’ll do. He doesn’t mind the walk, especially now that school’s out so he can walk to the playground and slide on the slide.

What we do when we’re not in the hospital

I’m almost afraid I’ll jinx us by writing this post. Patrick finished his course of antibiotics and antifungals a week ago. So far, so good. We’ve been settling into life at home in this break that the super anti-infection medications have given us.

Patrick seems to be on a mission to make up for all of the time and opportunity his illness have caused him. So, I’m doing all I can to support him and help him to be successful in doing this. Last fall, he couldn’t roll over. Now he’s crawling, climbing stairs, and cruising along furniture. Because he’s in such a focused, productive period of development right now, we’ve called in the troops to help him to accomplish his goals.

He’s got 5 therapists right now, making for a total of about 10 therapy visits a month. We’re working on speech, motor skills, feeding, and more. It seems that every time we meet with one of these experts, Patrick learns some new and amazing skill from the visit. After a little bit of reinforcement at home, he’s doing things that had previously seemed impossible, or at least a long, long way off.

Of course, a more active, mobile, and as one physical therapist describes him “impulsive” Patrick requires much more supervision. He breaks a little connector piece in his IV tubing a minimum of 3 times a week. And a backpack on wheels is not capable of following him up the stairs. We have many more bumps and bruises than we used to have. Patrick’s a big braver sometimes than his skills can allow for and I don’t think it would be a normal day without him falling and bonking his head on something. But, as tired as I am from chasing all the time, I wouldn’t have it any other way.

Last week we made a change in his IV therapy. Once a day now, he gets a one hour “break” from his TPN. No tubes. No pumps. I just disconnect him, put up the baby gates, and let him go. He plays and plays and then we reconnect the IV’s and the combination of activity and change in blood sugar knock him out completely. The only problem with this plan is that he’s taken to napping as late as 7 p.m.

Being at home with an easier medication regimen (just 2 oral meds and two nutritional supplements given morning and night) has actually given us time to do other things like cooking or playing and working in the yard orĀ  taking care of the amazing friends who’ve taken such good care of us. I’ve had time to really dive into plans for the upcoming benefit concert (which sound more and more amazing by the day!) One of these days, I’ll even catch up on the ironing. (This is a little bit thwarted by the fact that Patrick really likes to stand holding onto the ironing board.)

It’s so nice to go to bed at the end of the day exhausted from a day of work around the house and playing with my little boy. It’s been a treat to be at home with my family and friends nearby. Things are good right now and we feel very, very blessed. It can’t be this way forever. Until Patrick’s transplant, there will always be another hospitalization around the corner. But we are grateful for this little moment of peace.