Baby steps

I mentioned a while back that we were taking Patrick to see a doctor who specialized in rehabilitation and development. It’s about time I write about it.

The appointment went a lot more positively than I’d expected. I went in half expecting for her to see the muscle tone in Patrick’s foot and decide it was time for dramatic action. Patrick’s physical therapist had suggested botox injections and casting, and I was afraid that that was the next step.

I was so nervous, in fact, that I had Brian come along with me. That wasn’t the sort of decision I wanted to make alone. And he was kind enough to take the whole day off, which was an extra special treat.

They make you feel out a history every time you go into this office, including a list of everything that’s changed in the last 6 months since you were seen. This can be quite the task to list everything and I often just write blanket statements like “typical to short gut” so I don’t have to fill in all the hospitalizations, diet changes, etc.

The good thing about this form, though, is that it gives the doctor an idea of where to start, so she came in and right away said, “So why do you think he’s having problems with his foot?” We stripped Patrick down so she could see his muscles as he walked and then we had him walk back and forth between us. We also talked about the developmental lag I’ve seen on his right side versus his left. She watched the way he hold his hands when relaxed. She stretched his muscles to see how they move.

In the end, we didn’t decide anything new… but she confirmed a lot of things I’ve suspected. Basically, it looks as though there was some degree of brain damage caused by Patrick’s cardiac arrest. This isn’t a surprise. They did CPR for 15 minutes, which means that for 15 minutes, he didn’t have a good supply of oxygen to his brain. In fact, everyone’s always amazed at just how well he IS doing in spite of that.

This doctor, even telling me that there seems to have been damage, still calls him a miracle and says that he is far, far healthier than his medical history would predict.

The official diagnosis she gave is “dystonia”… which basically means “irregular muscle tone.” In layman’s terms, it means that his brain sends the message to move the muscle, but the message gets garbled somewhere along the way. The message the foot get tells the muscles to flex harder than they should or in the wrong direction. The faster he tries to go, the more the signal gets confused and the more unpredictable the movements.

She said to just keep working with him. She said that these muscle tone issues could vary in how much they affect him as he grows and the muscles relax or get tighter. In the future, they might still recommend injections of botox into the muscles to weaken them so he can have better control of them. But that’s not for now.

For now, we’ll continue to do what we’ve been doing. We’ll keep a brace on his foot and we’ll do stretches every morning and night. We’ll keep encouraging him to walk wherever he goes and we’ll hope that, like the rest of his right side movements, he’ll get better with practice so that you don’t even notice a difference unless you know what you’re watching for.

It’s a relief to have my suspicions confirmed and plan of action approved. For the past year I’ve been telling therapists that I suspected something was wrong. It’s only been since we started working on walking with his newest PT that it’s been clear that something actually was wrong.

It’s discouraging, though, too to know that he’s going to have this battle ahead of him. He’s young enough that his brain is very “plastic”, very adaptable and it is possible for him to overcome most of the effects of this… But it’s going to require a lot more effort from him and from me to learn to do those basic things.

Still, he’s making amazing progress with his “boot”. He spent 15 minutes yesterday walking 6 feet between his therapist and myself. Then, he spent most of the evening walking across my mother’s living room. He lets go when he’s playing next to furniture. He refuses to have two hands held while he walks. He is getting faster and steadier and braver. He’ll be walking in no time.

This Boot is Made for Walkin’

It’s been a few weeks now since Patrick got his brace, or as we call it, his “boot.” His therapist used this word the day she fitted him, and Patrick took to it. He sees me with his brace in hand and starts reaching and begging, “boo, boo, boo!”

It was hard getting used to the brace. For the first week, even an hour of wear had him grumpy, tired, and irritable. Daily stretches were the worst, as they worked the muscles that were already sore. I just kept pushing through knowing that things were supposed to get better with time.

The other awkward new adjustment was shoes. Patrick currently wears a size 5 1/2 .But, the brace measures a 7 1/2 in length, and when you allow for the bulky straps on the side, it takes an 8 to get over the brace. Obviously a size 8 shoe is too long for his foot and this difference made him seem a bit lopsided while he was getting used to it.

I really want to get over to Nordstrom, who have a “mismatched shoes” program and employees who are actually trained to help fit shoes, instead of just measure feet. Shopping for a spare shoe at Payless the day we picked up Patrick’s brace was frustrating and traumatic. I’ll forever pity the poor teenage associate tasked to wait on us.

But I digress.

Patrick has since made a wonderful adjustment to the brace. He even knows how to help me more easily get it on, if he’s not distracted with something else.

It helps. No longer does his little foot betray him at random, popping up or turning in and making him fall.  He doesn’t veer into the wall every 5th step while walking halls in therapy any more. (It takes more like 40 steps.)

He’s getting brave enough to walk more and more. He takes several steps between his daddy and me (or other adults he trusts.) He forgets sometimes that he doesn’t want me to see him stand, and lets go to play with a toy. I’ve even caught him walking along the edge of the couch without holding on – just reaching out and touching every few steps to assure he’s got his balance.

 

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There is still improvement to be made. At least once an hour his heel still pops up inside the brace – quite a feat, considering how much there is holding it down. Only then it gets stuck. I’ve learned that if he’s crying and begging for my help, it’s probably his foot.

His foot does still turn in a bit, too.. or I should say that his leg does from the hip.

We’re meeting with his rehabilitationalist today to talk about whether or not we need to take more action than just the brace.

But for now, my little munchkin is happily practicing walking. We walk everywhere. I’ve learned to allow extra time for such adventures. For example, we spent an hour picking up 3 items in the grocery store so that he could push the cart. We arrive, when possible, 15 minutes or more early to appointments so that he can hold my hand and walk inside. And we take walks around the yard and neighborhood.

These last take the most time because for the first time, Patrick can explore the things he’s been looking at for 2 years on his walks so we have to stop often to let him touch the fences and flowers and rocks along the way. I don’t mind. He’s earned it.

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 or  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.

We love making the doctors happy

Patrick had a couple of doctor’s appointments this week and this month the doctors were all smiles! After such a hard summer, everyone is happy to see him doing so well.

Patrick has actually been gaining weight.. He’s at 85% of the recommended weight for his height right now, and for the first time rising ahead of the curve. Today, with his clothes on, Patrick weighed 18 pounds.

In even better news, his liver tests looked good! His bilirubin (the measure of bile in his bloodstream) was in the normal range and his liver enzymes, although they show that his liver is still inflammed and unhappy, have been trending downward. His liver even “felt” normal on exam.

All of his other tests were normal! This is SPECTACULAR, as it is so hard to keep him stable for any length of time.

Today, I took him to be evaluated by the rehabiliational medicine department at Primary Children’s. The goal was to see if any physical or occupational therapy can help him to make up some of the developmental delays that came from this long illness this summer and from his delicate health in general. (We’ll be starting physical and speech therapy soon, in addition to his developmental theraphy).

At the end of the appointment, one of the hospital’s residents came in to visit. She took care of Patrick while she was on the GI service 3 months ago.. when he was still so sick and fragile. Now she was doing a rotation in PT. And she was THRILLED to see him! She held him and played with him and just couldn’t stop talking about how much he’d improved since she’d last seen him. She just kept saying, “he looks like a healthy baby!”

In the end, Patrick left with gifts of a new ball and blanket and a big hug and kiss on the head.

We are so proud of our little man and how well he’s doing, especially after all he’s had to fight through. (Just hearing his history today, the doctor said she came in expecting to find a vegetable, and instead found a happy, playful little boy).  We’re praying to be able to keep posting glowing reports like this one.