Early Observations: Tone vs. Contracture

I meant to update this 2 days ago but I didn't have the time. We took Elena to her first post-SDR PT session at Kluge Children's Rehabilitation Center (KCRC). Overall the visit was good. Emily (PT) basically tried to move E to get an idea of her range.

There is no doubt her tone has improved (now has less tone than pre-SDR). Her left foot bends nicely at the ankle, and we have no problem getting her into her AFOs (we just started wearing them 2 days ago, but she still doesn't wear them all day). Her right foot has always been the problem. It's amazingly easier to put her in her AFO on that side, but after minutes of playing, I noticed her heel was "up" again (near the hinge). I was dissapointed b/c I didn't think that would happen. Well, not happen YET--I figured it would definitely happen (probably on both sides) as Elena grows (growth spurts typically are problematic for spastic diplegics, even post-SDR). Why wouldn't E's right heel stay down? Still too much spasticity post-SDR? Muscle memory (after all, E's been moving with her right heel up for YEARS)? Heel cord contracture (tendons too short)? Leg length discrepancy?

There was an initial disagreement between surgeons regarding which surgery to do first, the SDR or heel cord release--basically her heels are (were?) up b/c of spasticity (muscle tone) and tendon shortening (due to her calf muscles being in one default position too long, b/c she is always on her toes). It's hard to tell which issue is greater because they mask each other. Now that the tone has been lessened, it's possible we're seeing a contracture. We will most likely lengthen her tendons surgically at a later time.

Since she is young, I am hoping we can stretch her tendons over time to postpone surgery for a couple of years. I don't know if that is possible. We're going to stay as conservative as possible. Of course, if it's just muscle memory or lack of confidence that is preventing her from standing up straight with her heels down, that should be easier to remedy.

Emily testing range, right (left is fine, not shown):





Emily testing range in her AFOs (socks are always on, but we left them off for viewing/pictures), right. Note when light pressure is removed, her heel comes up. We need to have her AFOs fit more snugly to keep her ankle down as much as possible.







Standing in AFOs, left and right side pics:




Doesn't the right look better standing up?

Standing zoomout (note she is bent over at the waist). Her posture should improve with some stretching and boost in confidence (she is still not standing very often).





To passively stretch her legs, Emily gave us knee immobilizers--velcro straps with unbendable planks to keep her in standing. When (and if) her AFOs can be tweaked to keep her heels down, these immobilizers will help her legs to stay straight while keeping her knees from caving in (classic spastic diplegic stance). She tolerates them very well. Ideally she'll wear them for 30 minutes a day--today we did 6 minutes.

Surprises at Home

Yesterday was Elena's first full day at home. She slept better last night than in the hospital, but she has separation anxiety from Jason, as he was on night duty at the hospital. I'm sure that will get better. It sure makes tired parents. Thank God we have Annette.
When I got home from work (early early shift--YUCK) I put Elena's AFOs on for the first time (with her shoes also). I'll post a pic later today. She didn't fight, squirm, or complain when I put them on. I do think wearing them gives her more confidence. I also think they feel rather heavy on her feet. I just had her wear them on our trip to the library, where she was in her stroller the whole time.
She wore them until we took them off after lunch, so maybe 2 hours. No complaints.

After E woke up from her nap, we did standing drills. She was less resistant to putting her heels down, and even helped stand up out of her chair, bearing weight on her hands and feet to do so. We did drills for 20 minutes while we played Littlest Pet Shop.

Before dinner, she threw a football all around the first floor and crawled to chase it. She didn't complain about her sitting (w-sit) or crawling, she was too busy laughing the whole time.

Later on that day, Elena wanted to do her treadmill. We put her shoes on again. While we were waiting, she stood up out of her chair, holding onto her dresser with one hand, and then started cruising along the dresser--for a few steps, then she looked at me like she was uncomfortable. I sat her down again after that for a few minutes. She took about 5 steps on the treadmill (with Jason holding most of her weight) and then said she was finished.

I certainly didn't expect her to stand up today or cruise at all on her own. YAY!

Day 5

Day 5 post-op--or should I say, DISCHARGE DAY!

Elena was in pretty good spirits today. The morning was spent calming her down between doctor visits, removal of IVs/tubes, filling out discharge information and getting Elena to eat. The hospital preschool teacher came by for a visit to ask if E wanted to go to school; she said yes. I sent her there with Grandma b/c I was expecting another doctor visit before discharge.
About 20 minutes later, my mom came in huffing and puffing asking me if it was alright for Elena to be moving around. I said, "clarify moving around".
"Oh, you know, crawling around, sitting up, reading books--is that okay?"

I bolted.

Sure enough--there she was, sitting up on the floor getting a book. She was a little shaky with balance, sort of like a newborn kitten moving around. She was having a great time in the preschool.





After school, we said good-bye to the nurses and strolled out. She was VERY happy to be going home!

Priorities were 1) BATH, 2) lunch, 3) NAP. But first she insisted on taking care of her baby sister, giving her a good rock before getting to business.



She also crawled a little--head up, tabletop, with reciprocal leg motion. Not a great pic, but here's what I have.



She can sit in a "w" sit but she really leans back. She also knows when she w-sits, we always ask her to "fix her feet", meaning try to taylor sit or side-sit. She always does it with her left foot (first), b/c that's the easiest leg to move around for her. It took her a while, she was almost studying herself as she moved, but she got to a side-sit with her left leg. I asked her if she wanted to fix her right foot and she tried and fell backwards (but laughed about it). She asked me to help her, so I tried, but she didn't seem comfortable, so I just let her play sitting however she wanted.



Later in the day, she sat on her "office" bench (bench without a back). She sat up and played with both hands. Sometimes she leaned so far back I thought she would fall, but she caught herself. We also played beans by her Bean Box. She sat in a chair with a back and arms; she normally leans over to play in the beans but I think this movement is painful. So I put a bunch of beans on the top of the box and that seemed to be good for now.



She did some standing drills, and we even "walked" on our treadmill before going to bed (we held her up, no shoes, and she lightly placed her toes on the platform and took maybe 5 steps before she said she was finished).

AMAZING. We are so thankful for everyone...our therapists, doctors, nurses, teachers, aides, friends, neighbors, and everyone just sending us good thoughts. Jason and I are dog tired. And NOW the hard part begins, right?

Day 4

Today was fantastic! First of all, Elena slept for the first night since her surgery. BIG DIFFERENCE. She also continued to eat relatively well, with no nausea issues. Overall her mood has been good.

The main goals today were to 1) get her to eat more, 2) do some PT (PROM, standing drills) and work on her confidence (having fun). She didn't really eat well until lunchtime, but that was alright. We did 2 major PT sessions, (a 2-person job). She did get her heels almost down at each session--the second session was later in the day, without a nap--and we did standing drills for over 10 minutes! The drill involved throwing a beanbag to a toss-across game, and when she threw the beanbag her feet barely moved off the floor (normally her spasticity kicks in when trying to move either her hands or feet). She still resists putting her feet on any surface, either due to pain, sensitivity in the feet, tiredness/poutyness, or confidence. When doing standing drills we hold her under her arms--today we did get her to bear some of that weight in her hands AND feet (holding on to a surface while partially standing).



We did PROM every 3 hours until mid-afternoon, after that I forgot until her bedtime. Her range looks great, and she is more relaxed and does not shy away from anything touching her feet. She also has excellent "potty awareness"--the nerves they cut are extremely close to those responsible for bowel/bladder function, but as of day 2 she has been informing us of her elimination needs.

Another goal is to sit her up 1-2 hours per day, either in a wheelchair or other chair, provided her joints are at appropriate angles. She can stay in a sitting position (involves trunk strength and balance) by supporting her weight on both sides, or holding on with only one hand. After enough time, she will fall to one side. When in her wheelchair for long times, she will list, but she can sit upright with voice cues. We prop up her arms for balance as well as fit (the wheelchair is a little wide for her).



She does ask to "put her shoes on" when wanting to do something out of her current range--she needed her AFOs and shoes in order to move well (balance foundation) prior to surgery. She thinks that by putting these on, she will be able to move like she used to. It will take her a while to realize that isn't the same now. I'm not sure when we'll be using her AFOs, but it isn't now.

For fun, we played hide-and-seek in the lobby under construction, played "school" with Grandma, and played with her toys given to her by visitor friends (as well as watching lots of Curious George). I'm seeing more and more of my girl E every day, only LESS TIGHT. Dr. Elias came by this morning at rounds and said she looked "perfect". WEEEEEE!

Day 3

In my mind, I figured Day Three would be our turnaround day. It was, in a way. We left the PICU late last night (Elena didn't need intensive care yesterday; the main pediatric ward was full). This morning, Elena had more of an appetite and was in much better spirits. She is able to sit up a little more, and can enjoy playing with both hands in a recline sitting position.





PT came in the late morning and stood E up again, this time with her feet on the floor. She stood up better today, willing to bear more weight on her feet than yesterday. The floor is also hard and cold, but she didn't seem to mind the different texture on her feet. She also complained of her feet being cold, and now wears socks willingly (before she didn't want anything touching her feet). We have a PROM regimen, supposed to be 5 times daily, and we can give slight pressure against resistance. INSERT PROM/MOVEMENT RULES (I had to give my copy to E as drawing paper today)

The rest of the day was not as great as the morning...the PICU is a place of quiet solitude compared to the main ward. Everything there is *loud*. E hasn't slept much since the procedure, and she didn't sleep at all today. We were supposed to do another standing drill, but E was very uncooperative so it was very short. After that we put her in her wheelchair (sitting regimen, supposed to do 1-2 hours per day) but she was very upset with it, and said she was nauseaous, so that was cut short today. Hopefully tonight she will rest well, and tomorrow she will eat well.

Day 2

Jason takes the night shift, the tough one. Elena had a rough time with nausea and lack of sleep. I came in this morning to Daddy having some holding time. Elena is much much calmer when she is being held.

There were a lot of changes today: Elena has her bed elevated (reclining), she is able to lie on one side of her body (torso and waist must be in-line). Jason noticed while she was sleeping that her ankles were bent, which was new.

She had her first real visit with the physical therapist today. Elena wanted to get off her back, as it was uncomfortable--so the therapist just stood her up. Literally. Partial weight-bearing, with the intention of putting her heels down a little. At first Elena resisted, cried, asked for me--but after she was up, she was quiet and seemed to realize things were not so bad. I was amazed that she could do this so soon. And her feet? Almost flat! With her legs pretty straight, too!


After that, they did Passive Range of Motion (PROM). The PTs moved her legs to the point of resistance OR to a certain angle, as not to put pressure on her back. Important to note this is *not stretching*. Her range was AMAZING. We could definitely not achieve these positions without serious resistance (especially her right leg, which is in the bottom pictures.



That was the extent of PT in the morning--a big change for Elena, and a glimpse of what her legs might be like months from now. PT returned later in the day to do more standing, and they asked Elena if she would walk to me (she didn't want to, but "asking" wasn't exactly what the PT meant)--and E DID!! She walked 3 steps (with assistance, of course) but that was MAJOR. Her reward was I got to hold her, but she didn't have to be flat. It was fantastic.




After that, Elena got to sit in a wheelchair. This is a big deal b/c she's in a position other than lying down, and you have to have trunk strength to sit up. We went on a stroll around the 7th floor, with our Dora balloon, and even downstairs to the main floor to see the Coffee Ladies. The idea of going on an "adventure" out of the PICU made E very happy.

Day One

Elena is still in a considerable amount of pain, but she's much improved since yesterday. She can sleep for an hour at a time, but her startle response keeps her from resting well. For those who don't know, people with spastic CP "startle" like you or I do, when surprised, or scared, but it's much more intense of a muscle spasm--and for someone who just had back/nerve surgery, that spasm HURTS LIKE HELL. And Elena typically does it after 20-30 minutes of sleeping, so she doesn't rest well.
She was allowed to "move" this afternoon (lying on one side or the other) but the transition is very painful. I was also allowed to hold her, but it was difficult to move her with all her cords attached, and it's a 2+ person job b/c we have to keep her "flat" during the transfer. She rested well in my arms though, so I was thankful.
We are also having a problem with nausea...the pain meds keep her sort of comfortable, but she can't keep even small amounts of liquids taken by mouth b/c of them. She now has regular anti-nausea medication, but she has to take them 8 hours apart, which is a long time. She hasn't ingested anything since Tuesday night, but we're hoping tonight she can keep enough liquid down to justify trying solid food (cracker(s)). Once she's able to eat something, I think she'll start turning a corner. PT starts tomorrow (it was supposed to start today, but E was resting when the therapist stopped by).
Her feet also hurt. This is not surprising after cutting nerves--I guess it's a painful tingle, felt more in her right foot than the left (b/c more nerves were cut on that side). She does not like to be touched below the knee, especially on her feet, and says it hurts. But after some whining, she's relatively quiet. Lots of books, lots of videos. She's a very good patient.
Overall her status update is great. She is exactly where her doctors thought she would be. That's great, but as a parent, you wish your child wasn't hurting...

The PICU

About 4 hours later we got the call that Elena was in the PICU. We weren't sure what to expect...I figured it was probably between a hysterically crying, flailing kid and a totally serene sleeping beauty. Um, sort of.
Elena was hooked up to a ton of tubes and monitors. Horribly reminiscent of the NICU. Elena was awake, sort of--moaning, crying, in pain. Her eyes were puffy from edema--lying face down for 4 hours will do that--and her throat was swollen/scratchy from the trach tube, and she was groggy/disoriented/nauseous from the anesthesia. The next couple of hours were spent trying to figure out what she could tolerate safely for pain management.
I thought once they figured out what painkillers to give her, our PICU stay might be smooth sailing--but I was wrong. Apparently, even though resting is the best medicine for sickness/post-op, there "is no rest in the PICU". She has to be checked every hour, and really, her "sleeping" is for 20 minutes at a time at best. She holds her breath a lot and winces. She is supposed to be much improved after the next 24 hours, where we should be transferred out of the ICU and to the main pediatric ward.
Her first sentence, after having her sheets changed and being moved around:
"Mommy!" *whining* "THIS IS NOT VERY FUN."

The good news was we got the news from the neurosurgeon that the surgery went beautifully. After checking her nerves, he confirmed that her spasticity was located only to her legs below the knee. When he found a spastic nerve, it was "off the charts" in terms of a spastic signal--meaning, there were no nerves that were mildly spastic, which made the judgement of which nerves to cut much easier. He found (and cut) more on her right than her left (which makes sense, as her right leg is tighter) and he feels like she is a "textbook case" of a patient that can benefit from this procedure.

The incision is maybe a and inch and a half long--could be smaller, I didn't get a good look. After it heals I'm not sure I'll even notice it.

SDR-Day

This morning was just about perfect. Elena woke up just as we took her to the hospital for her procedure. She was friendly to the doctors and nurses, even though the time was getting late and she was hungry. She took her "pre"-sedative like a champ...but didn't fall asleep.
I carried her in to the operating room. She had been in places like this before, and she does NOT like the gas mask...but she got it anyway. I was escorted out.

Then, we waited.

Last week's BIG LOOP!

I meant to post this, but didn't have time/energy. Elena has been walking around the house pretty reliably, but only a few feet at a stretch. This night was the first we witnessed her going around the whole first floor. She is 3 years, 10 months old in this video. She is also almost NEVER flat in her right brace/shoe. We can get her in/flat, and she walks better--but in about 2 minutes she's out again. Still, being able to say "Elena, come to the table for dinner"--WOW WHAT A LIFE CHANGE!!

PS. Video is not edited--so you get an idea of how long it takes for her to make one complete loop.

VIDEO is not posting...try here

Preparing for SDR

Elena has a busy schedule normally, with PT and school, but right before Christmas (under the guidance of our main PT) we ramped up her workout schedule to best prepare her for SDR this year.
I'm not sure if this is for everyone, but here is what we're doing:

Elena's normal PT schedule:
Monday: PT (public school), school (all school days include PE)
Tuesday: school, Little Gym class (gross motor play sessions)
Wednesday: school, speech therapy (she doesn't really need it anymore)
Thursday: private PT, school
Friday: PT (public school), school
Saturday: therapeutic horseback riding
Sunday: "day off", but if it's warm enough, we go to a park or the mall, or the hospital (where I work) to walk around/play
EVERY NIGHT: Stretching regimen (takes about 10 minutes, includes hip "bridges", sit ups, and transitional sit-ups to partial standing)

So, in addition to this, we added weight training, strength training, and treadmill to her schedule. I had been trying to get Elena to use her pediatric treadmill by introducing her to videos on my computer, which she only got to watch while walking on the treadmill. It worked--all too well, actually, as we initially added treadmilling Wednesday and Sunday nights, but she soon demanded it EVERY NIGHT (no joke). She walks (assisted) 5-20 minutes, we end whenever she says she's finished.
Weight training consists of 1-lb velcro weights we wrap around her ankles to do sitting leg raises. While sitting straight up, she is to straighten her leg out as far as possible with the weight on--this was initially difficult, as she wants to move both legs at the same time. We hold down her non-weighted leg to help her differentiate the two. She has gotten better at singularly using one leg at a time. She does (ideally) 5 raises/side, repeated 5 times, with a "playtime reward" after each set (we use magnetic dress-up dolls). It didn't take her long to insist on doing these every night also. Her leg strength increased dramatically once we started the weight regimen.
Strength/flexibility training consists of wall sits (normally bare-footed), where she puts her back against a wall (we have a growth chart here) and with her back on the wall, she squats down and then stands back up, with her feet as flat on the floor as possible. We call this "tall and short". We also do leg lifts--on all fours, with her head up, she raises one leg as straight as possible, as tall as possible, with the end goal being that her back and leg are in the same horizontal plane. We call these "puppy exercises" and tell her she's a puppy looking for something to chase. When she finds it, she points her leg (backwards, but who cares) and after holding it for 5 seconds, she can go chase (we put out stuffed animals down the hallway).

I'll try to get pictures up.