Begin Again

When I wrote that 2019 hadn't started well for me, I wasn't kidding.

Jason and I are separating.

The kids were told yesterday.

There is obviously a lot of change, which is very, very hard.

Quick Recap: Breakthrough (sort of), End of 2018

Hi everyone,

First of all, thank you all for your comments--truly, you are extraordinarily helpful at times when I feel like no one understands our situation. I feel like the biggest issue I have is trying to combat/learn our way out of issues at home when I do not have permission to write about them in detail, or at all. (For any new readers, Elena and Vivian have to approve anything I write on this blog about them).

So I'll do my best.

First, the breakthrough.

We have been working on a lot of self-sufficiency/executive function tasks/sequencing/attitude things for YEARS with our educational and psychology team. The reality is, we really haven't made much progress. We are considering a psychiatrist; not immediately, but the possibility is looming of getting help that way. (I understand that there isn't a lot of detail behind this).

Essentially a lot of this boils down to Elena being able to do things, but just doesn't. (Basic things. That she can do. I swear, taking all your comments into account, I am not asking too much with my demands.)

So, we are trying to find ways for her to practice skills without increasing her isolation (ideally, if she isn't ready, we don't just leave her at home, for instance). This has been a near constant struggle.

What ended up working was using her upcoming Chorus competition field trip (to Nashville) as bait.

I simply told her I wasn't going (as chaperone, or as her helper).

Her mouth dropped.

And then I told her if she wanted to go, I would not let her delay the group; she would have to find a way to prepare herself, using methods we have been trying to teach her, and she would have to demonstrate she was capable of this by a certain date or she would not be able to go.

So, this worked for a few weeks (a record!) and then sunk back, but as she realizes I am dead serious, I think things are getting better.

End of 2018

December was a whirlwind of end-of-school performances, medical appointments, and lots of time dealing with health insurance. My in-laws came down for Christmas; we always love having them, and they were especially helpful this year! My family joined us the day after Christmas and it was wonderful having everyone here. Dad is doing okay, Jason was our chef and dinner was lovely, and we even managed to get a family picture!

I don't know about you all, but my 2018 was a few amazing highs peppered among a lot of lows. Among the high points was my trip to Africa, spending time with friends and family in a few select cities (DC, NY), and our trip to the beach. The lows are more of the struggles vaguely described above, of course, my Dad's diagnosis, Jason's traveling for work, and navigating Vivian's epilepsy--which took about 3/4 of this year. I've been trying to take care of myself and our family during this time by stressing healthy eating, regular exercise, and a regular sleep regimen.

I know that the New Year is just another day, but the idea of starting fresh is appealing. Here are a few lessons I've learned this year, in no particular order:

1. Keep the best notes possible regarding health expenses. You never know when someone will be hurt or sick, and it can save a ton of time and stress if this is organized. I thought I was good before, when I blew out my knee in 2015--but Viv's condition is pretty complex. My plan needs some tweaks, including better digital organization, but I'll get there.

2. Everyone says it, but it's true: take time for yourself. I enrolled myself in an adult beginner tap dance class; I'm not good at it, and I can't make it every week, but I try, even if it's been a terrible night at home. I'll even get a sitter. The physical and mental challenge of tap really gets me out of my negative headspace, I can't possibly focus on problem solving home challenges AND getting the dance combo right.

3. Make an exercise goal. I joined an instagram challenge (something I've never done before) and while it wasn't super difficult, it made me structure in exercise where I wouldn't have otherwise. Now I make monthly short-term goals, and I've been doing well on them for the past three months. My biggest achievement (I think) is I've biked 50 miles/week (on my decade-old fluid trainer in the cold garage, mostly) for the past three months. I have bigger fitness goals, but it all depends if I can jog again, which I'll be working on in 2019.

4. Get fresh air every day. I know when things are negative, or cold and grey outside, sometimes cave days are good--but getting out, even if for a short while, makes them better (I think).

And here we are

Hi blogland.

It's been a really, really terrible 6 months.

No joke. I wasn't sure if I could write about


Vivian's epilepsy, horrible complications peaking in August

Elena starting school, first time ever having issues with coping with grade level academics

desperately needing more psych services,

continuing issues at home.

For months.



Then my Dad was acting strangely

diagnosed suddenly with cancer.





I'm ready.



Recaps starting tomorrow.

For any of you still reading,

thank you for your support.

5th Grade Field Trip: The Good, the Bad, and the Wheelchair

I chaperoned a field trip for the 5th grade last week; when I do this, it is more or less understood that I will be helping Elena. I try to be in the background (sometimes it's not possible) and try to let Elena be my guide.

The kids rode a charter bus, and chaperones rode by car; I brought the wheelchair with me. It was a hot day, and I had never been to our destination(s) so I wasn't sure what to expect. E's teacher typically prepares me well for field trips--but every one is a learning experience, and no one can prepare for everything. Still, when E's teacher is around she is very good at including Elena, having her lead her own way, and keeping her as close to the group as possible. I really appreciate that she looks out for E.

We separated into two main groups; E's teacher was in "A", and we were in "B". A random assortment of 5th graders (which is fine), and lots of parent chaperones (which is great). The kids got off the bus and we immediately went to our first destination, outside, a short walk across the street/bridge overlooking the river ("short distance" is relative, of course).

I immediately noticed there was not a bathroom break after the hour+ bus ride.

I asked Elena if she needed to go, she shook her head no and she started walking. She walked, stood, and when she got tired, she rode in the chair. It was a good fit. The third stop, I could tell that she needed to go to the bathroom. Why does she wait until we are far away? I had to wheel her back to the building, up the elevator to the women's restroom. By the time we got back, the kids were heading back our way--not a huge big deal, but I wish she would have taken my advice and gone before the group headed out the first time. We meet up with the group, and the guide tells me they will be going around the back of the building and for use to take the elevator up to the 2nd floor (where we just were) and they would meet us inside. I asked THREE TIMES which building--they all had names, and the guide just kept pointing to "the tall one" and he would not repeat the building name after me to confirm (really, how hard is that?). We headed to the buildings, trying to make sure we wouldn't be late to meet the rest of our group.

We go upstairs. There is NO ONE.

We walk around--I look outside the building's back door--there is NO TRACE of the group. Honestly, I don't know how you lose 25 loud kids and a guide, but I did. I figured I was in the wrong building, or they went a lot further away than the guide told me. So we went back downstairs, to ask the 10+ staff members who were hanging around there. They didn't know where they were either. With Elena nearly in tears, I nearly headed for the next building over…but thought that the 2nd floor on those were all outside, and the guide had said "inside the 2nd floor" so we headed back up. We have been searching for this group for over 10 minutes. We go back to the first place we checked, and finally we see some students heading to the door. E walks outside to see them, and I storm over to the guide--who is standing by himself in the shade. And I tried to start off civil, but I was super pissed off that Elena was left out. He actually told us "we didn't miss anything", and then I just about blew my top--she did miss things (I saw pictures later) and we were left behind. He knew E could walk out of her chair, he saw her do it, she was standing closest to him while he spoke in the beginning of the tour--it wouldn't have taken any effort to have him tell us where to meet him outside on the second floor. But it didn't matter to him--before, or after my comments, that Elena was left out. I WAS LIVID.

After that the tour switched guides (nothing having to do with my little chat, it was already part of the plan) and he was wonderful while he told us all about Civil War Cannons. They had a group exercise where they pretended to be a 7-man cannon team, and he had no issues when Elena was in a group. It was refreshing to see how well it can be done after such a rocky start.

The rest of the visit at that site was pretty tame--lots of Elena and me, walking or riding. Elena's classmates were giggling and traveling in packs, as they do; when E walks with her crutches she is typically not in a pack b/c she doesn't fit, or doesn't fit in (not sure which). Sometimes that is hard to witness, but as far as I can tell her classmates are kind and friendly--but when out of school, Elena has a hard time hanging with a group. It's an objective observation.

The second destination was a science museum. We broke into small groups. The museum was fantastic; BUT, a lot of the interactive exhibits had a huge physical component (running, walking a tightrope, feats of strength, jumping, etc.). Elena and I did these things to the best of our ability--again, mainly just us two (but not always). She was typically walking with her crutches, unless we were across the museum and had to meet up with the rest of the group. Overall, it worked well, except for one occasion.

All the students were going to meet up at the end of the trip to watch an imax movie. We were approached by staff that suggested we enter the theater at the top (wheelchair access) rather than at the bottom, where there are stairs going up to the three groups of seatings. The guide said the rest of the students would enter at the bottom and fill in the two outside seating areas (the middle reserved for other patrons not associated with our field trip). Sounded good.

Right before the movie was supposed to start, two girls were missing from my small group of six girls. We had three adults watching 6 kids; I was full-time on Elena, which was assumed by all of us, but I should have been keeping an eye on other kids too and I did not do that well. The girls knew they were to check in with us, and stay in the same area (we all assumed they just got sidetracked or forgot). There were at least 5 adults looking for them over 4 floors of museum. After 10 (?) minutes we finally found them, hanging out with friends from another group--glad they were fine (we figured that was what happened), and then we all went to the movie. But I was really ticked off. If two girls wander off, the entire student body came to a halt until we were all together--but if Elena is behind, no one notices. (I do understand that they know she is safe with an adult, and this wasn't necessarily the case with the two other girls. I do. I can't help being extra sensitive.)

Anyway, the students approach the theater, Elena and I enter from the top. We went to the leftmost rows of seats, as they were closest to the wheelchair entrance/wheelchair parking area.

The students came in at the bottom--and they all sat on the rightmost set of seats, closest to the entrance. All of her friends were on the other side. So, we decided to move closer--and by the time we got there, every single seat next to students was taken. If Elena wanted to sit near the student body, she'd be sitting next to chaperones. She nearly burst into tears. I was upset too. As her parent and advocate, I was really disappointed in myself that this happened while I was 'on watch'. I'm supposed to be thinking ahead…I let her down.

The truth is, she could have walked into the theater with the rest of the students and walked up the steps and sat with her school friends. It wouldn't have been weird, and it would have been fine. But because we took the wheelchair option (which I realize is not an "option" for everyone) Elena was excluded from the group. It hurt.

I figured it would be better on the ride home--I had carpooled with other field trip parents, and we were going to take our kids home instead of having them ride the bus. I figured the three girls would be laughing and giggling on the way home, making any uncomfortableness that Elena might have had that day fade away. Only then did I realize that an additional girl was riding home in the van…and as they piled in, the three girls went to the backseat (natural order of things, we were last to the car) and Elena sat in the middle row. Away from the giggles and jokes. She tried to engage in the conversation, but she was left out…again. I nearly broke down in tears on the way home.

A special needs parent might have realized that if any of the other girls was in the middle row, the four of them would have engaged together--b/c it's harder for E to turn around, she's much smaller than the others and gets swallowed in the seat. And it's no knock on the other kids or parents--they are nice people, and unless your kid is like mine, you don't realize these things are happening. It hurt Elena's feelings, being left out again, and it hurt my heart that I didn't prevent it.

After we got home, Elena and I had a few conversations about the trip (I waited for her to start talking--I wasn't going to bring up any issues she hadn't noticed). We comforted each other (probably more of Elena comforting me, to be truthful). I decided, as much as I/we was upset about these things--there is always something to be learned out of a negative experience.

Here is my list of lessons from this experience:

1. Make E try the bathroom before the group mobilizes.
2. Wheelchair accommodations that remove her from the group impede her chances of social interaction. If possible, have Elena stay with the group and use the chair afterwards. This is important as I want the wheelchair to have a possible connotation at all costs--and this was our first negative experience.
3. Bring backpack (lunch, etc) with the chair (or chaperone, or E wears something small) to help save time going to/from the bus to save time/effort during lunchtime.
4. Have E wear something with accessible pockets (small backpack, purse, crutch pocket, vest, etc.) so she can carry money, water bottle, etc. (She left it all on the bus b/c that's what the other kids were doing, but most of them had purses or pockets. E did not on this day.)
5. Make plans to talk to the tour guides personally (if I am chaperone, which I plan on doing for most of these types of trips) to determine beforehand when/if E can stay with the group, and when to separate with a handicap accessible route. Have a plan to meet up as soon as possible.

I'd appreciate any other insights you might have about field trips. Even though the trip had some uncomfortable moments, I'm glad we had the opportunity to learn these lessons before middle school.

The Dark Cloud

Well, it's been a while.

Elena knows (and approves) everything I write here, so I've thought long and hard about what I should post.

The reality is, I'm having a rough time.

Rather than go into detail about every mundane thing, I'll wrap it up like this. We spend a lot of time trying to teach Elena concepts, skills, self-care, etc. We give her opportunities, and try to help her make some of her own. But...they don't stick. She's like...a sieve.

Math concepts we worked on, and scored well on, vanish. She repeats everyday tasks four times because she didn't pay attention to get it done the first time--or second, or third, even when she's in a good mood and has no outside distractions. She doesn't seem to care that her actions (or lack thereof) hurt other people. Her idea of problem solving is nearly nonexistent.

She's had at least two new assessments (OT, which I should probably elaborate on in another post) and they have been helpful. Right now we don't have time for any new appointments (extra therapy, tutoring, sports, or other enrichment) b/c she has Drama club 3x/week (not all rosy there, either, as her involvement with the play and her castmates is lacking) and fitting homework and home life is time-consuming enough.

I wouldn't say these observations are new. I would say I am extremely discouraged that they have persisted so long, with very little improvement.

Left Out

It happens.

Unfortunately for Elena, she has experienced two in-your-face episodes in the last month. The first was a birthday party at our local pool; E was there swimming, basically walking in on the party prep and realized she wasn't invited. Jason packed them up and left before the party started. Hearing "I guess I forgot to invite you" was a crushing blow for E. She spent a lot of the day crying, despite my best efforts.

I know it happens. I know this family, and they are nice people. I know everyone can't be invited to every party. And I know that the birthday girl and Elena are not particularly close. The sting was very painful though, and as a parent, it is hard to see your child hurt.

And I know it's not unique to Elena. I feel like it will happen more for her--but I could be wrong.

The second, she was invited to a birthday party with lots of classmates.  Another pool party, which for Elena is not a great fit. I decided not to bring her swim vest, as I thought it would alienate her even more. The water was ice cold, and kids weren't in there very long. Elena stayed in the shallows with one or two other people, and the rest of the kids were in and out of the deep end.

During pizza time, I carried E's pizza and silently followed her to where she decided to sit. Most of the party were sitting at a picnic table, laughing and eating. Elena walked to the corner of the table and asked to sit where there were a pile of towels on the table. Two girls near her end turned to acknowledge her, looked at her, and then turned their backs to her and ignored her. Didn't move anything so she could sit. Elena looked at their backs for a second, put her head down, and walked away.

I WAS STUNNED.

I have never seen this before. It was so...mean. I just followed her lead--she walked to a chair where another girl was sitting and asked to sit with her. I put her pizza down and walked to a table where a few parents were sitting (yes, they saw the whole thing). Soon, E and the other girl were eating and laughing. I sat in silence. So did the other parents, for a while. Then one said "maybe the girls didn't know who those things belonged to", which I snapped wasn't the case (I tried not to be negative, but I couldn't help it). I took a deep breath and made small talk.

Look, I know it takes effort to include Elena in something like a pool party. I can see that not coming naturally to some of these other kids. I actually think it's a big deal for someone to decide to change their manner of playing so Elena can take part, or be part of the group--it's not instinctive. But it took actual effort to be mean to her in this case. And that just plain sucks, and it's the first time I've actually witnessed it.

I got up to move the car (it was down the hill, and I didn't realize there was a handicapped space closer to the pool--and with my knee, it was going to take a while) in case Elena wanted to leave the party early (I know I did). When I got back, the kids were eating ice cream, at one table, including E (there were a few chairs pulled up to the table) and they were laughing and happy.  I don't know who orchestrated it, probably the other grown ups. We ended up staying late.

Later that day, I had a discussion about friendship with Elena. Did she think the girls at the pizza table were treating her like a friend? Did she consider them friends? Sometimes I worry that she doesn't know what a friendship should feel like. I guess this is a process that a lot of kids go through, which is comforting in its typicality but burns all the same. Elena had some great insight during our conversation, where she told me the girls who were mean were not in her class, so she does not know them as well and does not hang out with them at school. I guess that explains a little. There was also an older girl (sibling?) who obviously was someone to impress--the social hierarchy was very easy to witness developing, for anyone who remotely cares about that sort of thing. Some kids at this age care a lot, some not at all. It doesn't bother Elena much, which is to our advantage. For now, anyway.

A New Appreciation for Walking

Last month I hurt myself playing soccer.

It was the one injury I was worried about, the one I was trying to avoid at all costs (I was trying to make it until my birthday--playing has hurt more lately, and I had been considering retirement).

I blew out my left knee.  Shredded ACL, sprained MCL, torn quadricep, three meniscus tears, giant cartilage tear, multiple bone bruises.  It was pretty terrible.

I had surgery four days after my injury to reconstruct my knee.  I had my ACL replaced, one meniscus tear repaired (two others shaved down) and the cartilage flap removed and my bone punctured in order to created pseudocartilage. Rehabilitation has been slow and painful.  I use crutches to walk (Elena's next size up loft strands, actually) and had great difficulty getting around the house and taking care of myself.  I have therapy twice a week, and do exercises around the clock.

It's been a real eye-opener.  The difficulty in dressing, bathing, carrying, and general instability has made me more sympathetic--and proud--of Elena and how she has struggled and coped with her disability. We've had some great talks about this, and she has seen me stretch, do home PT, and cry from pain and frustration. She is more helpful around the house and does more for herself. She is also quite proud of the fact that she is currently faster than me. I'm trying to be a model of safe choices (using crutches around the house to avoid falls), standing tall and straight, and diligently doing my PT exercises. Elena definitely is picking up on this.

The worst of my pain is from the bony procedures (ACL attachment and cartilage removal/"repair"). I've broken bones before, but not on a joint--it's bad. I am so super thankful we didn't go through with the osteotomy procedure we were considering earlier this year...I understand sometimes there isn't a choice, but I can now imagine how badly that hurts. I have had serious pain management issues, and will remember to address this for Elena's future procedures.

I expect to return to full (or near full) mobility in four to six months. Elena is keeping close watch on my efforts and attitude, so I am doing my best to be a good example. Jason is being SuperDad, taking over nearly all house and kid duties.  I'm very thankful to family and friends for such a great support system.

Surgery Postponement

Oh my goodness I don't even know where to start.

I've postponed any surgeries for Elena.  It's good, and bad, in many ways.  I'll try to explain.

Over 8 months ago we started noticing Elena's crouch getting worse. I brought it up to her regular doctor, mentioning that her movements had become labored and her endurance/ability to carry had declined. He dismissed it as nothing. I was not pleased, but I didn't know what else to do. Our main PT suggested finding another doctor for a second opinion. I dragged my feet on this for lots of reasons.

At the beginning of fourth grade, her gait looked terrible--to me, anyway. Aside from occasional complaints of knee pain, Elena was happy. Fourth grade was (is?) challenging for her, but not as bad as last year. She is keeping up well academically and socially; physically she has different issues, but overall school has been very positive. Elena has been healthy and overall happy and rests well.

Then she started complaining of knee pain more often. Crying, sobbing, several times a week…so I started looking for other doctors. We went several times to her main ortho, hearing every time that "it's not that bad"and getting dismissed. That's when I started going to other doctors, driving myself crazy with ways to try to help change Elena's situation.

Then Elena decided to join the Drama club. Everyone supported this decision. She landed the lead in the school musical, and everyone made her strength/comfort a main focus to try to get through the final performance. She got a neoprene leg brace to attempt to deal with her ongoing tendinitis (just above her left knee-her main weight bearing leg), we cut her PT time in half, Elena started seeing a massage therapist, she got lots of rest and stretching. And we kept going to doctors.

Second Opinion (SO) basically said that it was time to do something. His recommendation was knee capsule release and slight lengthening of her medial hamstrings as well as ilipsoas; she would be in full leg casts for ~6 weeks, weight bearing immediately, then out of casts/rehab for another 6 weeks. I was upset my SO didn't agree at all with our main ortho. So I went to another doctor, recommended by SO.

A Gathering of Many PTs urged me to make sure doctors didn't touch her hips; her hip flexors may seem to have contractures, but they don't--she has good range, and they didn't think iliopsoas lengthening would help her get out of her crouch. They argued for a Therapy Exercise program specifically targeted to get her out of her crouch. I was (am) doubtful this would succeed-but agree that it would't hurt.

Third Opinion (TO) disagreed completely with hamstrings, recommended distal femoral osteotomies instead. I was so totally confused and upset--how can none of these doctors agree? TO's argument for osteotomies made sense to me, at least at the time.

I finally got Elena's gait lab report (that I couldn't read, as it wasn't formatted in a way I requested) and sent it to SO and TO, as well as a new set of E's hip x-rays. TO got back to me first, and conceded that her gait lab study indicated that she could be helped by hamstring lengthening OR the distal femoral osteotomies. I mentioned that I know when they do the osteotomies, frequently they bring down the kneecaps (patellar tendon advancement) at the same time and asked if we should consider this, as E has patella alta and tendinitis from the pulling on the kneecap. Doc said we'd have to do an x-ray to look at her knees; I said do it RIGHT NOW. So she did. Both of Elena's kneecaps are fractured from stress of crouch gait. (Docs suggest stress, not impact, due to nearly identical break--the right crouches worse than left, which is true and inferred by degree of fracture.)

Left Knee. Fracture is close to cap

Right Knee. Fracture is separate from cap

I was crushed-my child is breaking her bones just trying to get around as best she can. I went ahead and scheduled the osteotomies and patellar tendon shortening (they don't do advancement on growing kids) so I could have her ready for summer break.

Then I got a call from SO, who warned me "absolutely do NOT do the osteotomies" and we talked for an hour why not. He said it wouldn't fix her crouch gait. Period. He said after examining her films and gait report (which his office returned my data disc, and printed out a report for me with his notes and recommendations) that he stands by his suggestion of lengthening surgery. He said the broken kneecaps are upsetting. It doesn't always happen but he has seen it before. He answered my question well about "when do you surgically intervene in a growing child?"--"When there is pain, and/or when there is a decline in function". We definitely have both.

I got in touch with some families I know whose children had broken legs; I found that rehab (in typically developing children) is closer to a year than 6 months, as I had originally thought.


So.


I decided to postpone (indefinitely?) the osteotomy surgery. I immediately felt better about it. I was upset with myself--if it felt that wrong, why did I schedule it? Was it desperation? I never want to make a decision out of desperation. My first reason was she wouldn't be better by summertime; that was the main reason to do it at the end of February--after the play, ready for summer. Since that wasn't going to happen, the procedure was cancelled. I feel like others were hinting at me against the osteotomies--therapists, blog readers--but I wasn't listening. I wasn't open-minded enough? I needed more than a hint? I don't know. It's a lesson I'm glad I have the chance to learn. I feel like I am patient, but maybe not enough? I don't know.

I decided to give the PTs a chance. It can't hurt, and if decide to go with surgery it's better if she's stronger before any operation. I asked Theresa how long it would take to see results, assuming that Elena could do her exercise regimen; she said three months. This would end our exercise regimen too close to summer break to opt for surgical intervention afterwards, so I told Theresa I'd give her six months (until the end of summer).  If Elena could do it. If her pain is too much, we opt for surgery (most likely with the hamstring lengthening with SO).

There is also a clinical trial we might be involved in (more on that later) and some possible changes in bracing. Onward!

A Dangerous Move

I'll recap our beach vacation. After this.

Today, we went to the pool.  This was after Elena had PT in the morning (which was fantastic), and a picnic at the park (lots of exercise on a beautiful day).  After we got home, we went to the pool with a friend.

There were other neighbor friends there.  Elena tries to hang with some girls her age--nice girls, but they simply move too fast for her to keep up.  Elena is a weak swimmer at best (as is Viv), but she is improving.  

I am enjoying talking to some friends--always with a watchful eye on Elena and Vivian.  I notice that Elena has her hand on the wall--she has been swimming to the deep end, following her friends, a few feet at a time as they gravitate down the pool.  I'm watching.  She's behind them, they see her but they are moving as a loose group, and they are more interested in the three main girls than E on the fringe.  

Suddenly, the girls take off to the other side of the pool (deep end, short-side).  I watch as Elena decides to follow them.  She has never tried this before.  I doubt she can make it across.  But I give her the chance.  

Always watching, I see her take a few "strokes" as she has done at swim lessons, and as she does so, she becomes more up-and-down in the water.  She gets halfway across the pool.  

I can tell she isn't going to make it.  Suddenly, I think Elena realizes it too.  

It's all of 5 seconds before I'm in the pool and get her face to the surface.  

She swallowed...maybe 2 gulps of water?  That's what she told me afterwards--that's a typical day's play in the shallow end for her--but she was scared.  I held her as I walked to the shallow end (I am only 5' tall), told her she was safe, I have her, remember to breathe, etc.  She was stiff and tight (the water was pretty cold anyway), coughing, surprised.  

The kids didn't notice a thing.  The parents did, and asked if I was okay.  Surprisingly, I was--only b/c I anticipated it and was ready.  Elena and I (and Vivian, who saw me jump in to save E) talked a lot about water safety, knowing your limits, and the possibility of drowning.  It's hard for Elena, b/c all of her friends can swim, they are all taller than her, and she's been doing so well at her swim lessons that I bet she didn't think much about it.  

We are all fine, thankfully.  Elena can do a survival back float pretty well now, but I guess in her panic she forgot about that.  Vivian still needs to learn that one, but she can paddle better than Elena.  Elena was back in the shallow end, playing, shortly after her rescue--swimming and going underwater as normal.  And was I ever thankful.  

I feel very strongly that Elena will be able to swim safely in a pool.  It will just take more time.

One Week Off

Elena went to sleep away camp this week at Camp Holiday Trails.  It's a pretty big deal for our family.

I pick her up tomorrow.  I hope she had a good time.  But this post isn't about that.

I'm sure all parents that send a child away to camp, or to school, or to a friend/family's house for a stretch of time miss them.  They feel the void that remains.  I know I do.

What is worse, though, is that the void is compounded by ease.  It's so much easier to go anywhere--do anything--with just Vivian.  I feel incredibly guilty about it.

In the last two weeks (Elena had school, and then went to camp) I taught Vivian how to ride a bike without training wheels.  I taught her how to swim.  She now folds towels and shirts and laundry without asking.  She helps make lunch and helps clean up.  She called a friend to play.  We stayed up late and caught lightning bugs outside.

It warms my heart and makes me numb at the same time.  This small list of things will take Elena a long time to accomplish.  How does that make her feel?  I can't hold back Vivian for her (and never planned to).  In general, Elena is very encouraging.  But it has to sting.

Vivian and I have had a great time, and I can tell she misses Elena too because she has stuck so closely to me.  Viv broke down a few nights ago, wailing uncontrollably because she missed her sister.  She put it beautifully when she sobbed "my head feels like my heart is in two pieces".

Me too.  

Feeling a little...crushed

It's been a whirlwind as the school year winds to a close.  Vivian has finished preschool, Elena finished her testing (yay! with no meltdowns!) and has less than two weeks left until summer break. Jason and I went on a short vacation, with his parents taking care of the kids.

Things aren't bad here. But I'm stuck in a bad mindset.

Elena is tight. I know that, I've seen it for a while--the emphasis on testing/studying/tutoring results in a LOT of sitting. Her crouch gait is markedly worse. She hasn't grown a bunch in the last six months, so it's not about that. I don't know what happened (besides school?) but...frankly, her posture looks terrible.

I am hoping that with summer coming, she'll have lots of opportunity to stretch, move, play, and have fun. After her ortho appointment this week, though...I can't help seeing the future in dark colored glasses.

Her hips "seem fine", her contractures "aren't that bad", and her joints "seem okay" and she is "pretty flexible". Sounds okay, right? That's what I thought. Her main PT keeps talking about how she needs a sustained stretching regimen (impossible during the school year, unless it's at night--again, impossible to implement successfully during the school year) and her doc agrees. If that doesn't work, I assume surgery is on the table to try to help her get out of her crouch so she can avoid a lot of pain later in life. But with surgery comes weakness, with weakness comes poor posture, pain, less mobility. Elena is such a happy kid and loves to play. I don't want to be negative but currently I feel in a very hopeless emotional state.

She has patella alta (high kneecap) and honestly, probably has for quite some time but with a new diagnosis/description it hits like a ton of bricks. Common with people with diplegic CP with crouch gait. So I did some research (with any research on CP, there isn't much that I feel really fits with us, as every case is so unique) and I found this:  Cerebral Palsy lifetime care--four musculoskeletal conditions is an article that covers patella alta, hip dysplasia, spondylolysis, and cervical stenosis.

Elena does have shallow hip sockets; I'm not sure if subluxation is an actual concern, but developing early arthritis is. She has lordosis, crouch gait, and has had a rhizotomy, all indicators of developing spondylolysis. I stopped reading in a pile of tears. I feel most of this article rings true for Elena.

If her gait wasn't so poor lately (it got worse in the last 4 months or so) maybe I wouldn't be so emotional. And when I've reached a breaking point enough to write about it, things tend to turn up, so I am hoping this is true. As she gets older, and disability sinks in, I see her less likely to try new things and mix herself in a group setting. Not entirely-it could be that she is saving energy, or is smart enough to know what she likes and does not like to do-but to me, it seems like some of the "can-do" flame is burning out.

She hears all these suggestions from therapists, doctors, and Jason and I-things to hopefully make things better or keep bad things at bay. I'm afraid what Elena hears is "YOU ARE NOT TRYING HARD ENOUGH TO FIX YOURSELF". That isn't the message (!) but I think that is what she thinks it is. I'm trying to listen and learn and help her to use her body as best she can so she can do as many things as she wants to do.

Without going into too much detail (b/c I'm tired and emotionally drained right now) it looks like the short-term plan is night stretching, possibly botox (hamstrings, adductors, and calf/soleus? I don't know), massage with the intent of bringing the kneecap down (manipulation of some kind, it's "not supposed to be painful" but it sounds like it is), and a new stander. And fun stuff, but this isn't a fun-stuff kind of post.

Please comment if you know about this stuff. I'd love to know what you have done, or what you've told your kids, or what worked (short/long term) or what didn't. Any info is appreciated.

Let's Talk About CP

I didn't think things were different than usual.  Things were normal.  Well, normal for us.  But one day Theresa (our PT since E was 8 months old) said that she thought it would be a good idea to talk about Elena's cerebral palsy more often.  

I mean, it's not a secret.  We know it, she knows it, but...we don't mention it often.  Quite frankly, I didn't want to bring it up unnecessarily because I was worried Elena would use her condition as an excuse for things, which is something we just don't do.  But Theresa was persistent.  She thought it would be beneficial for us to "bring cerebral palsy up as often as possible".  

In her view, she thought it would help Elena understand why her body moves the way it does.  I thought it would give her a reason not to try as hard.  Theresa also said that by making it part of our everyday conversation, as often as possible, as easy as possible, would help Elena open up--to lots of people in her life--about living with CP.  Maybe not now, but maybe later, when communication might become more difficult.  

Elena and I communicate pretty well right now.  But I definitely welcome any advice that might help us understand each other as we get older.  

I spoke to Jason about it, and we both immediately got on board.  We started talking about it more often.  Peppering it into conversation, using it to describe why she is tight, or why breaks on road trips are really important.  Or why we want her hands to feel comfortable on her crutches, or why exercise and proper seating are important, or why her testing is different than her classmates.  

You know what?  It's been great.  A really, really great piece of advice.  I haven't experienced a lot of Elena instigating conversations about cerebral palsy, but I feel like they will come easier with this new approach.  She seems...more at ease, in a way, as if she knows I will be a better listening ear.  

If you have cerebral palsy, did your parents/caregiver/therapist do this?  What age?

The Give and Take

Well, I've learned a lot in the last two weeks or so.  With school back in session, and me home now, I have a more complete picture of how Elena handles her day.

Our current situation operates on a fulcrum, and I see it everyday, in every thing, regarding Elena.  It's hard to explain, b/c it encompasses....everything.

As she spends mornings in her stander, her legs get a stretch.  But her sitting posture suffers.  In her stander, she can't practice keeping her hands out of her food like she does when she sits at the table.

We practice math after school.  She is doing great!  But that extra 45 minutes of math means that there is no free time because it's bath night, it takes her an hour to do her homework, and bedtime waits for no one.  She needs her rest.

She wants to do things herself.  We want that too.  But we limit what she can do in the morning (we dress her, but she brushes her teeth, etc.) or else she can't get to the bus on time.

Time.  Independence.  Strength.  Spasticity.  Academics.  Tightness.  Play.  Rest.

When improving one results negatively in another, what do you do?

And as her younger sister handles more than one of the above (with ease), it just exacerbates the situation.  We're between a rock and a hard place.  All the time.

The good news is, I really see this balancing act now.  I'm still working out some options (possible homework accommodations, looking for time saving ideas around the house, dropping some after school engagements, giving Elena more choice time) but it is a constant struggle.  The other piece of good news is Elena and I are communicating about it.  She is better at understanding why these things are important (therapy, homework, stretching, practice) and she knows that I am trying to give her things she needs--but also things that she wants--like playtime, creative time, break time, friend time.  I know those things are important too.

Stay-at-Home-Momhood

Well, it's officially been over a week since I left work.

I'm not sure why, but I hesitate to call myself a stay-at-home mom.  But I am (now).  I do miss the idea of having a job out of the home--but I don't miss work. AT ALL.

I miss the facade of having it all--a job I love, and my well-taken-care-of family at home.  In reality, I didn't have either.  I just didn't realize it.

It's amazing what you'll tolerate, a little at a time.  That's how it was at work.  And at home, I'm crushing it.  Cooking, cleaning, being active with the kids, getting their homework done, little fun things, you name it.  Both Elena and Vivian tell me several times daily how glad they are that I am home.  If that's not validation enough, I have a bathroom that hasn't shined for a year (don't judge me) that is now spotless and my favorite room in the house.  The house TLC is coming along slowly, three hours at a time (while both kids are in school) and it's going great.

You don't have to tell me that stay-at-home-moms work.  Any parent already knows this, working or not.  In my case, I found out the hard way that my home life suffers plenty when my work life is (was) overloaded.  So far...my sabbatical is a huge win.  Physically--no more constipation issues, I sleep much better, and my contacts don't bother me any more (no I'm not making this up).  Mentally, I still juggle a lot--but it's things I WANT to do, which is relatively new. Emotionally, I feel better about being there for the kids.  Elena and Vivian have been hugely appreciative--something I would never have expected from kids so young.  Vivian has playmates coming to the house, which is completely new.  Elena is planning playdates after school.  Everyone is going to bed better than before.

Life is good.  I'll have to put up pictures of our recent adventures--roller skating, cooking, making the basement a playroom, art projects...eventually.  Now, it's time to rest.

That Work/Life Balance Thing

I don't post much about myself here.  But this topic has been on my mind--constantly--since this summer (if not before that).

So, here goes nothing.

I work full-time.  I have since before the kids were born.  Overall, my job is pretty good--great benefits (even though they are cutting health coverage a bit, it's still pretty good), and I like the work (I guess you could call me a scientist).   I also work seven days a week.  Not full days on weekends--but in general, I have to be there every day when projects are being done, which is (in general) all year except Christmas, Thanksgiving, and a vacation here and there (planned well in advance).  In return, I have a pretty flexible schedule that allows me to be at E's therapy appointments and doctor's visits, and maybe a field trip here and there for E or Vivian.

I sort of missed writing about the child care transition, even though it was pretty major.  Since Vivian is in preschool now, we encouraged our Fantastic Nanny Annette to find a new job (which she did), and I have shifted my hours so that I am home for the kids after school.  We all knew this would happen sometime...we hated to say goodbye to Annette (although the kids will still see here every now and then) but it was the best choice for everyone.

And I am exhausted.  BUT--I love Love LOVE being there when the kids are out of school.  Sure, some days they are just contrary (who isn't?) but I feel like life is more complete.  The 5:00-7:30 pm "crunch time" isn't as severe, which is a really big relief.  I am exhausted, though.

So.

It seems my employer and I may be at an impasse, in terms of the hours I work--because they do NOT like this change.  I understand their point.  I think they understand mine.

I'd like to keep working, as long as I can be here for the kids.  That's the work-life balance I want.  The balance I deserve, and the balance that I need.

I feel like actually having that--"Work Life Balance" is a joke.  I'm not sure it exists.


EDIT:  My last day will be November 1st.  

Dietary Changes

First of all, a HUGE THANK YOU to everyone who responded to my request for avoiding constipation for Elena.  The followers of this blog provide invaluable information regarding life with cerebral palsy, and I seriously appreciate your readership and your comments.

So, after overnight hospitalization for constipation, with x-rays to prove impaction, we were sent home and told to give enemas every 2 hours until productive.  After #12, we switched to 1x/day for a few days.  We stopped at #14 or #16, I forgot.  Elena was a pretty good patient, even though she seriously disliked what we had to do.  I felt so bad for her...once she was eating and drinking well, I knew we had to find some changes to improve her ability to make bowel movements.

That was two weeks ago.

We're doing the "full court press" against constipation.  Elena will do just about anything to avoid this happening again.  I've made the following changes:

1.  Reduce the amount of milk Elena drinks.  She is still allowed milk (we switched from whole to 2%), but only for one meal (on average).  Instead she will substitute water.

2.  She takes two probiotics at breakfast every day.  We decided on Culturelle Children's chewables and Digestive Advantage probiotic gummies (Wow they are expensive!  But still cheaper than the hospital).  She also has yogurt for breakfast several days a week, half of the time sprinkled with crushed seeds/ground oats/flax seeds.

3.  We've changed her Miralax dosage from 2 tsp to a full capful (~3T) in a super large cup filled with 1/2 apple juice, 1/2 water.  She's supposed to drink it throughout the day until it is gone.

4.  I loved the suggestion of increasing her fiber intake.  For her age, the general rule is age+5 grams of fiber/day, in her case this is 13g.  I think she is close to 10 on a regular day, so my goal is to try to double it.  I haven't made a huge change in her diet to achieve this yet--but we are examining food she normally eats and asking ourselves "does this have fiber in it?".  Some meals there are lots of fiber-rich foods, and others there is ZERO.  I'm switching foods like pasta for the whole wheat version (which none of us really like) and trying different grains instead (which no one but me likes).

5.  Encourage water drinking throughout the day.

One thing I really noticed, though, is that I can't see a way to dramatically increase her fiber intake and keep her calorie intake high.  We've tried extremely hard since she was a baby for her to gain weight.  I'll have to find a happy medium if our dietary changes can't keep up with her energy demands--or if she can't keep close to 38 lbs.  My gut feeling is she'll be fine without pushing high-calorie real foods--or, at absolute minimum, we keep the cheese and dairy and pasta intake while making sure to add something to the meal that has a better fiber content.

Overall I think we are on the right track.  Thank you so very much for your comments!

Our New Nightmare

Okay, nightmare might be a little extreme...but that's kind of what I am anticipating.

Elena had a checkup with her orthotist today.  She's still tight from decreased movement from being sick; but there is no denying that her legs are very tight--her hamstrings and gastrocs especially.  This is not a big surprise...she has grown quite a bit, and her spasticity has increased (marginally, I think, but compounded with growth it is easily noticeable).

Surgery isn't really a consideration right now.  Her contractures are small enough not to warrant intervention.  But, if we want to try to help Elena move better, she needs prolonged stretching.

She is doing well in school, and is an active child.  The only logical time for a prolonged stretch is at night, while she sleeps.

The good news is we can have night splints made for this.  We had some options to start this a few years ago, but Elena's nighttime difficulties and terrible "sleeping" habits made this near impossible.  Thanks to our wonderful family psychologist, E now goes to sleep very well, and I was (am) hesitant to interfere with our new bedtime routine.

So, I'm stuck between a rock and a hard place.  No one wants to make E sleep with cages on her legs.  I feel like she thinks it's some kind of punishment...and we're only trying to help.  And I cannot imagine that stretching for 8 hours nightly won't make a difference.

Elena was present while we all talked about options.  She was upset--I was too.  She also understands on some level, that her tightness is a problem, and there is a non-surgical option that we want her to try. It's unfair for someone so young to have to process this, no doubt.  It's also never going to change--unless, maybe, prolonged stretching makes a difference.  I think it is worth a try.

I want Elena to weigh in as much as possible in the sleep stretching plan.  My idea is to slowly transition (hours per night, type of brace) from zero to (hopefully) 8+ hours of wearing her splints nightly, for a test period of 3-4 months.  I want to take pictures every morning and see if, and when, any changes are observed.  And then share them here.

If you've already tried this, I'd love any information you have to share.

A Short Vacation

Well, long story short--we had to postpone a highly anticipated trip to Disney.  So, Jason and I decided to take the kids on a little short vacation just two hours away.  We took them to the Great Wolf Lodge!
Neither parent really knew what to expect except for a water park.  What we didn't expect was the child-centricity of the resort.  Elena and Vivian LOVED the size of it, the look of the lobby--and apparently tons of other families did too, b/c it was PACKED with kids.

There was a LOT to do at the Lodge--but we started with the water park.  Water always makes me very nervous, because neither E nor Vivian can independently swim without a life vest.  Couple that with a very large park and plenty of kids that are pushing/leaning/crowding certain areas--you get a very vigilant mother.  I would have taken lots of pictures/videos, but my camera wouldn't stay dry.

E and Viv started in the toddler area, which was cute and relatively calm.  My heart soars when I see Vivian here; she is so adventurous, proud of herself, and I marvel at how easily she gets around.  Elena is having a great time, but asks for my hands to climb the steps to the little slide.  Since we're all sort of cold, I oblige.  She goes down the slide sitting up very nicely, and quickly rights herself in the water once off the slide.  She doesn't pop up and walk/swim to do it again, although she'd like to--the act of exiting the slide into the pool of running water seems a bit much for her to process while putting her feet down, so it's slow going to do it again.  Both kids are loving it, and we're all happy.

Then we tried the bigger kid slides.  There is a huge climbing structure--mostly made of rope "rooms" and tunnels, with a few steps to separate sections.  Definitely NOT handicap-friendly.  We try it anyway--we are all very slow, and the rope hurts all of our feet except Vivian's.  Lots of kids pass us, and we are the only parents trying to go up this way--which means that there either must be another way up, or no other parents here have to escort their children on this slide.  We finally make it to the top--only one rider at a time.  I go first, and wait for Vivian.  She comes down BEAMING and immediately screams "AGAIN!" when I help her out of the slide.  E comes down next, twisting and turning, sitting up very well the whole way down--until she meets the "pool" part at the bottom of the slide, which surprises her and she flattens out, getting a faceful/mouthful of water.  I help her out, she is scared, and coughing, and doesn't want to try again.  I don't blame her, she seemed quite unhappily surprised at the ending of what was otherwise a great adventure.  We head to the lazy river.

Elena loves the lazy river.  She gets to swim, ride the current, try to avoid falling buckets of water and just is thoroughly enjoying herself.  I have to be vigilant, as lots of kids in rafts simply do not notice that their inflatables can come together and push E's little head under water or smush her face between the plastic--so I spend a lot of time pushing them away.  Lots of parents are doing this; kids on the rafts are oblivious.  E and Viv also love the wave pool.

The second day we did a lot of the same, but with two exceptions; we took E and Viv (separately) on the two-person big slide (on rafts) and it was a huge success, and Vivian had to leave early b/c she needed a nap.  So Jason and E stayed--for two and a half more hours.  That's a LONG time for E to be swimming!  Her love of the park was great--but the combination of her wearing her swim vest and the crotch strap made for some pretty serious chafing on her thighs.  No more pool for a while!

There is a challenge at the Lodge called MagicQuest; it's basically a scavenger hunt type game, where you have a magic wand with a memory chip.  You "find" things on your magic wand and activate movement around the hotel with a proximity sensor in your wand.  Basically, the kids carry and wave their wands around and stuff happens--magically!--and THEY LOVED IT.  It was a lot more fun that I expected--E had to walk around a lot (which she did) and Vivian even enjoyed it (it is aimed at reading-aged kids and above).  Elena typically walked with one crutch and held her magic wand with the other hand.  She got LOTS of stares and questions.  One young girl was so nice, polite, and just didn't get why Elena used her sticks even after we tried to answer her questions.  And then we got the "what's wrong with her" as we entered a crowded elevator of older kids--Jason and I answered in unison "NOTHING" and then Elena piped in that these were her crutches and she uses them to get around.  The girls that asked seemed satisfied, and ended up being quite nice.  My guess is most of these kids haven't ever seen (or noticed) anyone wearing AFOs, or using crutches, etc.  We notice that stuff all the time.

The kids also tried bowling for the first time!  They had 5-lb bowling balls and bumpers on the lanes.  Elena was tired, so she asked for help, which we gave her part of the time--she DID do it herself, though!  Very proud of both girls for hitting those pins!

Overall, my impressions of the Great Wolf Lodge are positive.  My big negative critique is the cost...the only thing "included" as a guest is water park access (everything else costs additional).  My huge positive review is the water park, especially the lifeguards.  They are EVERYWHERE, and they appeared very alert and responsible--it was quite impressive.

The best part of the trip was being together as a family, just the four of us.  Elena and Vivian got along beautifully; they both slept in the sofa bed together, and it was wonderful to witness the relationship between these two girls.  I'm such a lucky wife and mother.

Fall

Well, it seems like I'm out of my emotional rut.  WHEW.

In a nutshell, I've had to come to terms that I need to have a near-complete shift in my way of thinking all things Elena.  Basically, I've viewed E's movement patterns in terms of achieving her most "normal" gait/balance/posture/stance possible through her daily life--including planning what types of therapies/surgeries/equipment we need to make progress possible.  At this point, we're more-or-less in a holding pattern, or plateau.  And that feeling is new to me.   It doesn't mean I won't try to challenge Elena or help her learn to use her body better--it means that I need to live more in the now instead of the future.   Appreciate now, and realize that this probably isn't the best she'll ever move--but it might be, and we need to show Elena that this is okay.

This is okay.  It's just a pretty big mental shift.

The good news is that Elena really likes to get 'in the mix'--with her classmates, with her family, outdoors, you name it.  She's outgoing and adventurous, which makes giving her new motor challenges easy.  Our Fall Bucket List gives us all some inspiration!

Here are some of the things we've checked off our list lately!

Leaf Pile!

Leaf Fight!

Leaf Attack!

Determination:  Washington Park Edition

The Post I Didn't Want to Write

This has been a pretty emotional week for me, and to be quite honest I'm not sure where to start.

There are three main parts to this:  school, E's visit to her orthopaedic surgeon, and her last PT appointment.

Regarding the first point (school), Elena has a fabulous team of people--educators, therapists, aides, and fellow students.  We have a few goals for her this year, but they were more or less informal and I had a great start with her team in the beginning of the school year.  The goals (aside from her IEP) were:  1) E will keep up with the class (under her own power), 2) she will carry her own lunchbox, 3) she will navigate steps at the school herself with good speed and 4) she will maintain focus to stay with her classmates (she is very distractible in hallways and tends to lag behind).  Then my husband was on an extended work trip for three weeks, and everything else disappeared off the radar.   When I reconnected with the team, I got some surprising news.

I had heard previously that E was always late, which I assumed was b/c of her losing focus in the hallways between classes.  Actually--that wasn't the problem at all.  Elena was always late--WITHIN the classroom.  She's last to the table, last to circle time, last to get up from the floor...and not only last, but actually very late.  At home she gets around without issue--but she's not hard pressed for time, unless it's in the morning for the bus, and that's not a huge problem.  I was floored. I figured the biggest obstacle was distance (for example, to the music cottage outside the main school)--and I was very wrong.  I'm hoping this is a focus issue, something related to her not wanting to stop a given activity to make it prompty to the next INSTEAD of a giant gross motor issue in the classroom.  I guess I hope that, anyway.  I was pretty disappointed that we had another/different/additional problem to deal with on top of her obvious disability.

Then we met with E's doctor, a yearly scheduled visit that often gets pushed back.  Honestly, this doc doesn't do all that much for us; we frequently get the "keep doing what you are doing" one-liner, and I have to press for more feedback, which I do.  During his examination of E's legs, he mumbled "that's interesting" and didn't continue.  I asked him to elaborate.  He said it was "shocking that Elena had so much spasticity below the knee, considering she had a rhizotomy".  I didn't know how to process this--what was he talking about?  And then I mentioned something about how SDR gave her the power to differentiate her right and left legs.  I can't remember the details--the conversation stopped (we were at the end of our appointment anyway), and I knew I was defensive but curious and the visit was over--it's sort of a blur.

A few days later at our usual PT appointment, Theresa asked about our doctor visit and I relayed what the doc said.  She immediately agreed.  WHAT?  What did that even mean?  And then Theresa said something that resonated--that patients who have had SDR typically do not deal with so much tone in their lower extremities post-surgery.  E is on her toes--A LOT.  The impulse is strong.  She can put her feet down when standing, on command, and stay there--so the problem is NOT length.  It's spasticity.

The whole reason we had SDR in the first place.

I felt like someone dropped an anvil on me.

The reality is...we don't have any other options.  This weight is so heavy.

I've tried to bounce back--honestly, we are NOT where we were pre-op.  This is a fact.  I've been thinking about this a lot, since I was asked to do a guest post of "where are you now" post-SDR, and up until last week, I was all sunshine and rainbows about it--and now I am disillusioned.  Pre-op, Elena's legs, when straight, were like steel--I felt like I was literally going to break her legs when trying to put her in her braces.  If she tried to move one leg in space (sitting, hands-free, or sometimes with her walker) both feet would move.  She fell "like a tree" all the time.  She could not side-step or back-step, etc. etc.  Post-SDR, the biggest difference I have always noted was that she can differentiate (and bend) her right and left legs--making walking, dressing, stairs, and protective responses much much more feasible.  I guess I didn't realize that most patients do those things with their feet flat--with a better foundation for balance.  It's easy to put her feet in her braces, but with them on and in her shoes, she's still on her toes.

This "up-on-her-toes" phenomenon didn't just happen.  It's been as long as I can remember, really, even post-op.  She's better at putting her feet down, but it HAS to be a conscious action.  I guess most other patients don't have to do that.  Theresa said that she's seen E's biggest gains after her lengthening procedures.  I figured that was because of the combined forces of SDR and the lengthenings, but now I'm not so sure.

I am quite upset because her spasticity is still a problem--and it isn't getting better.  I don't actually know if it is getting worse, but simply having such tone can cause all sorts of issues as she grows, and aside from stretching and therapies I have no other options (save maybe phenol block?, of which I am not keen).  I'm upset b/c I didn't think I had to continue to deal with this.  I guess we have been all along, but now that I am conscious of it, I find it very troubling.

I do think that she can have better command of her body (feet down, better recruitment) once she learns how to move "from the center" (think dancing or yoga)--but that is such a mature concept, it will be many years before she can understand this.  It's my job to try to keep her strong, stretched, and preserve her joints until she gets there--and if spasticity is bad, I don't know if I can do it.

Like I said...this weight is heavy.  I feel like Sisyphus.