Friday, January 16, 2015

Surgery Decision, Mostly Made

After three different doctor visits, a lot of time thinking and gathering information, I think a decision has been made (pending a few phone calls).

We are going with a different orthopaedic doctor.  She recommends  a distal femoral osteotomy, in both legs.  If this is the only procedure, Elena won't have to wear casts--just braces that we can remove if needed (bathing, etc.).  She may have something done with her patellar tendons; I'm not sure yet.  If she does, she'll need to be in casts for 6-8 weeks.  

That's the short version, anyway.  Her hips are fine (shallow, but fine).  The distal (femur end near the knee instead of the hip) osteotomy makes sense to me, given her femoral ante version and how badly her knees are angled toward her center line.  If this helps her posture/gait, which is the intent and which the doctor believes it will, less pressure should be on her knees/ankles/big toes, which should help alleviate (or at minimum, not worsen) her issues related to her crouch.  

The majority of stories I read related to surgery regret seem to focus on procedures involving the hips.  Has anyone had a distal femoral osteotomy (not involving hips) out there?  What was your experience? Are you glad you did it? How was recovery?

The procedure, as far as I understand it, is relatively simple and the cut site gets some sort of "cap" on the bone, which is supposed to make the overall process (including recovery) quick.  This doctor believes that changing the bony structure is a better way to help crouch gait than lengthening tendons.  I'm not sure I believe this, but regardless--I do think that in Elena's case, the osteotomies should yield good results.

I look forward to any and all comments.  

Monday, January 5, 2015

Happy New Year! Goals 2015

We talked about our goals as a family, and we have a few.  We try to think of these goals by season, as to work on them throughout the year.

Goals for E (* denotes a goal made on her own):
1.  Swim forward and back longways across the warm water pool.*  My guess is the pool is about 15m across.  E can swim across the short-side, but she isn't always successful. Sometimes she looks fantastic, other times she sinks. I think she just needs more time to figure it out.

2.  Try to get out of her crouch.  I know this is a lifelong issue.  We'll try something new this year.

3.  Use the walk path around the neighborhood.  There is a nice path around the houses here, but it's gravel and hilly.  We've never taken a walk on it.  I'd like to see how far we can go.

4.  Bike the river trail without help.  Trike or upright bike, I want her to be able to use the brake appropriately and pedal up the small hills.

5.  Start voice lessons.  E has asked for voice and piano a while back; she enjoys piano, but as we've learned from the psychologist, it accentuates almost everything that is difficult for her.  

6.  Help me cook more often.  E is enjoying being my helper, and can now use a sharp knife (thanks after-school class!).  It also opens up a lot of great opportunities to talk about real life math.

7.  Try yoga again.

Goals for Vivian:
1.  Go down a water slide.*  Vivian is almost an independent swimmer now.  If she passes the swim test, she can slide this summer.  

2.  Have after school activities.  Viv typically gets dragged around to Elena's appointments, but doesn't have her own. She joined a girl scout troop (once a month), and I enrolled her in a tap dancing class.  She also wants to take ballet, but we'll have to fit that in later in the year.

Goals for me:
1.  Finish the 40 for 40.  (Forty preferably-athletic events in the calendar year between my 39th and 40th birthday).  I'm halfway there.

2.  Try every class at the gym.

3.  Declutter.  Specifically the storage room and the garage.  

4.  Drink more water. I get headaches, mostly from dehydration.  

5.  Sleep better.  I am a horribly light sleeper and hardly ever rest well.  This got infinitely worse after I became a parent, accentuated by the fact that I had a child that could not get in/out of her bed on her own and every obstacle was a serious fall hazard.  Elena can do almost everything on her own (wearing her leg brace at night makes it very very slow) but I am constantly aware of every sound.  

6.  Try the garden again.  I constructed a compost bin last summer, and we've been adding to it since then.  I plan on trying raised beds of sorts, so E can garden without squatting so much.  We'll see.  

Goals for all of us:
1.  Be loud cheerleaders when Jason runs his 10-miler!

2.  Look at our world a different way.  E has been interested in astronomy (before they started studying it in school), and we had a special meeting with a hobby astronomer last year.  We'll have another stargazing party (we take out a mattress on the driveway and kids come over) or two.  And Vivian is really into amoebas (I think she liked the word) so we'll take water samples from the lake and see the small stuff.  I'm looking for a secondhand microscope, as well as making one of my own (my first attempt wasn't successful).  

3.  Everyone walk to the beach on their own.  Grown-ups will carry chairs, but not kids.

4.  Welcome our new baby cousin!  I am very excited about the impending arrival of my nephew!  Vivian has never seen a newborn.

5.  Send a card with family updates.  We used to send one out at Christmas, but we're two years behind.  

6.  Craft more at home.  I'm not into crafting unless it has a specific use (knitting blankets, decorating cookies, making Halloween costumes) but E and Viv could use the fine-motor practice.

7.  Find a game the entire family enjoys playing.  Right now Viv doesn't like to play our current favorites.  

Happy New Year! Recap of 2014's goals

A few days late, but Happy New Year!  We had a great Christmas holiday and a nice break from school.  The weather was nice, so both girls had fun with friends and family!

I don't have many holiday pictures…there were also a lot of doctor's appointments over the break.  But that's for another post.  I have been thinking of our goals from last year, our goals for this year, and how we can best achieve them (given the hit to E's mobility/upcoming surgical options).

First, I'll recap last year.

1.  INITIATIVE.  Check.  Elena has been more responsible in getting her homework done, getting ready for school, etc.  It's been a gradual process, but it's definitely improved.  Her homework nook and a few changes around the house has made it easier.

2.  Summer of Independence.  Check. And it helped a lot with goal 1.  Sure, with her crouch issues/pain, we've had some setbacks, but overall she knows we expect her to be as independent as possible.

3.  Have another stretching trial.  Check.  We use her stander regularly at home, and she uses one in school.  I can't say it's helped much, but we tried.


5.  Have a playdate twice a month.  Half-check.  Drama club helps with her social development, and takes a lot of time.  Twice a month is a bit much, but E has had more playdates than ever (still not tons, but some!).

6.  Take a trip to visit a friend.  Nope. 

7.  Go camping in our new tent!  CHECK!

8.  Run a race.  Nope.  Viv did one with me but we didn't think it was a good idea with E's intermittent knee pain.

9.  Go to an aquarium.  CHECK!

10.  Go kayaking.  CHECK!

11.  Go up and down the stairs, with one hand on the railing, the other free, regardless of footwear, on a regular basis.  Nope.  She can do it, but not on a regular basis--only when she's feeling really good.  With her knee/tightness, she's already fallen down the steps twice this year--so the pressure is off of this goal.

12.  Do the cha-cha slide (or other dance) without crutches.  Nope.  This was a little ambitious.

13.  Write a story/poem/comic and submit it to a contest (there are a few we like, either in the paper or on radio).  Nope.

14.  Ride her bike (with training wheels) independently.  Meaning, if she has to brake, she does.  If she has to get on/off, she does.  If she falls, she gets back up and on the bike.  Right now, she's done everything but the fall independently, but with very close supervision.  Nope.  We did get toe clip pedals, which help riding and make it difficult for her to get on/off.  We've taken a break from her regular bike and concentrated on her trike.

15.  Hunt for shells at the beach--standing up, carrying a bucket.  Nope.  We did try, but it wasn't successful.

16.  Try to FaceTime (or other video chat) with a friend.  Half-check--we did a lot of this with family.

New Years Goals for Vivian:

1.  Make her own breakfast (cereal, toast, or some other low-maintenance option).  CHECK!  She's a whiz with the toaster and frozen homemade waffles.

2.  Put her laundry in a clothes hamper.  Check!

3.  Ride a bike without training wheels.  Check!

4.  Roller Skate with her new skates.  Check!

New Years Goals for Me:

1.  Have a regular exercise regimen.  It doesn't have to be the same thing every week, but the frequency of activity should be more than once a week.  Check.

2.  Do two large races.  I've already signed up for a bike race (ride, for me--I'm not racing).  I hope to enter a short triathlon as one of them (but we'll see).  Mostly check.  I decided not to do long races, but shorter ones.  So far I have logged nearly twenty of them.  My plan is to do forty, before I'm forty (in one calendar year).  I am about halfway, right on target.

3.  Reduce clutter in the house/clean the house.  I'm doing a good job on this, but I'm not finished.  Check.

4.  Make some sort of beach shoe for Elena to wear with her KiddieGaits.  I have some ideas we'll be testing out before our summer beach trip.  Nope.  I spent too much time on crutches and tried to find a good shoe.  A good try, but a failure on both counts.

5.  Grow a garden for food and flowers.  We didn't get much to grow last year.  Half-check.  I grew a lot of leaves, not much actual fruit/veg.

6.  Volunteer at school.  Check.

7.  Add enough fiber to our diets (specifically, Elena's) to try to eventually discontinue use of her laxative.  Still a work in progress.

8.  Read five books (or more) this year.  Check! I've read over 14. I lost count.

9.  Visit a new city, with the kids, on a school break.  Check!  We took the kids to Boston!

10.  Go out for a family movie.  Check!

Overall I'd say we did very well on our 2014 goals!

Friday, December 19, 2014

New Waiver Business

I decided to apply for a new Medicaid waiver.  I love our current one (ECDC waiver); last year I called a UCP branch (not the one in town, one in a major city--Richmond) and asked if there was anything I should be thinking about for the future, as E grows older.  The answer was yes, the Developmental Disability (DD) waiver.  Basically, it's like ECDC on steroids.

You have to qualify in at least two different categories to apply for the waiver.  I could think of four.  So, I called up the office and asked what I needed to do.  The first thing was to get a psychological evaluation to prove Elena isn't intellectually disabled.  No problem, right?

WRONG.  First of all, I only had 45 calendar days to get the report in.  I needed the report before I could get a screening.  I called the school psychologist--she took 5 days to get back to me, and then said they didn't do that (they don't--unless you already have a psych eval on file as a part of your kids' IEP, they won't do it).  I called twenty psychologists in town; most of them didn't do this.  Oh, and by the way, psychological evaluations for exclusion are never covered by insurance.  For the psychologists that would do the screening, prices were $350 and up.

Well, I got one--but I couldn't get one before the screening appointment, which I had made at the Richmond office on the same day as two other appointments for E (I didn't want to pull E out of school more than once).  I was allowed to do the screening in good faith that E wouldn't be labeled intellectually disabled (excludes from the DD waiver).

The screening went well--E actually qualified in five out of six categories for the waiver.

We had E's psych eval--it's basically the WISC IQ test and a report.  I faxed it over, and now we're just going through the hoops to get on the DD waiver wait list.  Which is about 5 years long.  I figure that's okay, maybe we'll have it when she gets to middle/high school.

I got a call from the psychologist, Dr. Patrick.  He said if I was willing, would I be interested in coming in and talking about Elena's test results; he said he might have some tricks that would help us deal with frustrations as E gets older.  ARE YOU KIDDING?  Who wouldn't?

That appointment was this week.  In a nutshell, they said that Elena is basically a verbal genius.  And that given her language skills are so strong, one would assume that other skills are strong (true assumption).  UNTRUE in real life.  Her other scores--particularly spatial relations, problem solving, ordering--are on the low end of average.  (I'll write the official psych categories once I find the report again).  This IQ score spread between her verbal and other categories--is seen in less than a half of a percent in her peer population.

But it's relatively common in spastic diplegics.

The difference in these skills indicates Elena has a non verbal learning disability.  I don't know much about this, but schools do; I'll be giving them this report addendum once I get it.  The psychologists believe that once a few NVLD tricks are employed, E will make rapid progress in her deficient areas.

I said that was great…but what can I do at home?  I gave some examples, such as:

1) Brushing teeth. For a very long while, she would fight us all the time b/c she insisted on squeezing the tube from the middle instead from the bottom.  I showed her tons of time, she just would go back to her way and scream that there wasn't any toothpaste.  For MONTHS.
Answer:  Are you normally trying to get somewhere during this teeth brushing event?  Yes (school).  They said I can't be a teacher and a time manager.  I have to pick one.  If I'm teaching her, time doesn't matter, and we do it calmly and work it out.  If I'm a time manager--just help her with the toothpaste, b/c she won't get the lesson.
2) Brushing hair.  Elena loves her long blond hair, but she can't brush it well.  I've taught her how to start at the bottom, move up, and then brush down from the top, as well as from the back, where you hold the brush behind you and go down from there.  Both psychologists said at the same time "she doesn't know where the brush is" in relation to her head.  Makes sense, b/c she basically tangles everything up in the back.  Again, the solution (besides cutting her hair) is to sit down, teach her, mirror each other, etc. so she can learn a different way.
3) Time management.  I tell her she has 40 minutes to do four things (get dressed, brush teeth, come downstairs, brush hair).  We are always running late, we are always waiting for her.  She knows how to do these things (minus the hair), she knows how to tell time, she knows she takes longer but still won't get started and it's always a struggle.  Again, the psychs say in unison, "tell her to do one thing.  Then when that's done, tell her to do another one thing."

This is all pretty new around here, so I'm reading up on NVLD and dividing my time between teacher and time manager.  That was a good piece of advice, as I have seen the frustration level decrease since that change.

Hopefully school will help…and there's a chance that she'll receive OT, which would be great.  If not, we may need to seek OT privately.

Surgical Consultation Recap (ongoing)

Things have been busy here.  Overall, things are wonderful, with the exception of Elena's gait/crouch.  So, we've had a few appointments to gather information.  Warning, it's long.

I made an appointment with another orthopedist, recommended from a friend.  So, we took the day off school and headed to Richmond to see Dr. Chester Sharps. Long story short; I like him, he's very personable.  Our meeting got pushed late (we had 2 other appointments that day, and we were the last appointment of his day), and while I wasn't upset at him, my patience had run out and I didn't present myself the way I had intended.  Basically, I wanted to say to him "So, what do you think?" and instead, all my frustrations with her current doctor came pouring out, and then we talked options.  Here's the options recap.

Elena has 9 problem areas (if you are going to address "all"), assuming her hips were fine (her last x-ray indicated they were, I found out later that x-ray isn't current enough).  From the hips down, they are: 1) hip flexor (iliopsoas) tightness/contracture, 2) adductor tightness (not terrible, though), 3) hamstring contracture (multiple, forgot the actual names), 4) patella alta (high kneecap, both sides), 5) knee capsule contracture (don't remember the name; basically her knee is caught in a contracture so it can't straighten), 6) femoral and 7) tibial anteversion, 8) severe pronation mid foot (rocker foot), and 9) bunion (initial formation of) on her left toe.

I was a little shocked at the list.  That wasn't really my question, so I had him remove any area from the list that wasn't really a problem with her movement.  I want to improve her "ease of movement", not have her just stand straight.  He removed any osteotomies from the list, stating that her anteversion didn't seem to affect the way she moved very much.  I asked if it would get worse, he didn't seem to think so.

We both agreed that the best course of action to protect her joints and have her move better is to get out of the crouch.  To do that, Sharps stated that one needs to approach it from two points:  hips and hamstrings.  If you lengthen hamstrings, you still have hip contractures, so you bend over at the hips.  If you lengthen hips, you can straighten from the thighs-up but are still bent at the knee.  This sound logical to me, but most docs don't touch iliopsoas b/c I guess they figure they are easier to stretch/small to operate on?  Not sure.  Sharps also noted that b/c E's knee is in a state where it can't be straightened, he'd do a knee capsulectomy (cutting the knee capsule)--basically making a cut so the capsule can be extended.  Because of the knee procedure, Elena would have to be casted above and below the knee to ensure stability and proper healing, for 6-8 weeks.  She could be weight bearing (think walk-like-a-penguin, which she can do a little).

Am I excited about that?  Not really.  When I look at a good time frame, it would have to be after the play (mid-February), still in the cold months (b/c otherwise casts would be too hot), ideally during school (she needs the distraction), and out to enjoy warmer weather and swimming/beach.

The logical time frame is right after the play.  She'd be out of her casts by her birthday.

I still wasn't sold, so I went to her regular ortho doc.  He's not a friendly guy, but I think we have a good professional relationship, and he's known her since she was 8 months old.

He saw her walk 10 feet with her crutches.  E was petrified of him, and she stood much taller than usual, not an accurate picture at all.  He said "Do nothing.  She's not that bad."

Now, I'd agree with him if Elena gave him an accurate walking example.  Or if he watched her move for more than three minutes.  Or if she wasn't crying from knee pain two times a week.  Or if her endurance was better--it's one quarter of what it was this time last year, and she's hasn't grown much.  Or if she was safe at home--she's started falling, including once down the steps.  Or if she could still carry something.  How is this picture not that bad???

We have tried almost everything we can think of.  Botox is out--it doesn't work anymore, and it doesn't do much in the first place; she gets daily stander time (in school and home), PT (in school and private), we stretch her every night.  She wears a night brace.  She wears a daily compression brace to try to alleviate tendinitis pain.  We see a massage therapist.  She sinks into her crouch and relies on her hands to try to keep herself from falling.  She is exhausted from just trying to move.  This is NOT the way it used to be.

*sigh* If I've learned anything from these consultations, it's that I made a gross misjudgment with our regular orthopedic doctor.  I assumed that since we've been seeing him since E was a baby, he'd know her better.  I thought he'd kind of know her trajectory, know what to expect, based on where she'd been.

THAT'S WRONG.  Doctors see all kinds of patients every day.

He doesn't remember us, he sees us maybe three times a year.  It's a snapshot.

Which makes me wonder why I put so much weight into his opinion, when one of his colleagues recommends something completely different.

I am trying to keep an open mind, but it's difficult.  As far as something noninvasive, no Botox.  PERCS could be fine for hamstrings/hips (that's basically what they'd do anyway), but it won't help her knee capsule.  I've heard of alcohol/phenol block, but again, that won't help the knee.

Of course I get the fact that no one wants her to get worse, given the potential with surgery and scar tissue or something going wrong (remember, no bony stuff here, just soft tissue). And I know very little of knee surgeries--my guess (?) is it's relatively minor, just to give space, not like reattaching the achilles or something.  But if I do nothing she still gets worse.  Her crouch is a negative feedback loop--sink, less stability, causes pain, sink more.

I assume that if she gets out of her crouch, she will have better ease of movement.  Am I mistaken?  Anyone have experience with this surgery--not osteotomies--to get out of a crouch position?

She was in a good place for the past 5 years.  So, I guess that means we were doing a decent job of keeping her stretched and moving until her growth (?) or daily expectations (school, home, responsibilities, etc.) increased to the point where she needs more than what we are currently providing.  

Anyone want to weigh in here?  I appreciate your comments.

Wednesday, November 19, 2014

Not-So-Annual Card Exchange

If you're new to this blog, I organize a card exchange for Elena (aiming for a late December delivery date)--she LOVES mail! More importantly, the exchange has been a great way to remind Elena that there are other kids out there like her--kids who wear braces, or wear glasses, use crutches (or other devices), who have siblings, friends, go to school, etc. etc.  The best part about it was I didn't say anything when she first saw your picture. But I could just SEE Elena's face recognize she was not alone in her struggle with CP. That is invaluable. It's been fantastic.

If you are interested, please email me (cpmom2009 AT yahoo DOT com) with the following information:

Your name (and/or child's name), child's age, diagnosis, favorite thing(s), siblings, etc.
You address (in full, including country)
How long mail will take to arrive from Virginia, United States (if you know) (particularly important for overseas mail)
What holidays you celebrate, if any, near the end of this year
Primary language--If English is not your primary language, we'll try anyway!

I will not share your email information OR addresses with anyone without your permission. This exchange is between E and you.

*NOTE: This is NOT a gift exchange. Sometimes people send little things, which is very nice--but never expected. We'd most appreciate a card, a message (or a drawing/doodle/coloring if writing is difficult), and a picture of your child. We typically send a card with a message (Elena writes some or all of it) and a picture.