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.

November in a nutshell

I know I have been writing a lot about Elena's crouch, and surgery ideas, things like that.

I see it constantly--but there are so many great things that are going on right now--if you took a snapshot, really, the crouch/surgery/doctor things are the only real negative.  And that's pretty darn good.

Both E and Viv are doing well in school.  Report cards came out last week.  Jason and I were astonished at E's grades--she got three As and two Bs--and one of her As was in Math!  She has really been applying herself--and it shows.  We are so proud of her.  Vivian is simply rocking kindergarten and she loves it.  We are so proud of her too.

Drama Club is also going well.  The director tells me how well Elena is doing every time she sees me.  They are just starting blocking the show, so we'll see how that goes.  The Tea Party will probably be Elena's easiest part, as she'll be seated for most/all of it.  I love the way the director is finding ways to work with and around Elena's disability.  She also has her costume--we need to be sure it fits, but I think it will work beautifully!  E carpools with neighbors in the play after rehearsal, which is another opportunity to be around her peers.  It really is quite nice.

I've volunteered for some after-school sessions with siblings of Drama kids--it's a great way for Vivian to have playmates, and I bring building toys, games, and snacks to try to keep the kids happy. We are all really enjoying it, and I get to meet other kids and sometimes their parents.

We have a nice schedule of school, Drama, therapy, homework, playtime, bedtime on school days.  On the days off, we plan something fun--last weekend we met up with a friend of my parents who is an amateur astronomer (Elena is studying space right now!) and he taught them all about the moon, eclipses, star systems, telescopes, and gave them some fantastic pictures he's taken of distant galaxies and time-lapse photos of the lunar eclipse.  It was so awesome.  The weekend before that, we had a great afternoon with family friends (our kids are the same age and just love each other). This weekend E is going to a big game day at our friend's house--she'll be the only kid there, but I think she'll do just fine.

So, in a nutshell, life is really really good right now.

This month is just flying by...I need to get our Holiday cards started.  I guess that's up next!

Why am I always behind? October round-up

Life has certainly been busy here.  There is so much going on--school, drama, school volunteering (me), homework, therapy, doctors visits...and lots of fun.  October was a beautiful, fun month--so here's some of the things we did!

Random acts of Fall

We've been working hard on our Fall Bucket list.  Hot chocolate, stargazing, leaf raking/jumping, bike riding, making pumpkin treats, seeing's been great.  E can spend more time outside now that the mosquitos are gone for the season.

Leaf Pile Action!

Belvedere Plantation

When the girls were small, we'd bring the wagon and pull both.  Last year, they both walked the whole time--amazing!  This year, with Elena's crouch issues, I brought our double jogger stroller.  Not a great fit...but neither is her wheelchair.  If anyone has a good suggestion for a mobility solution when terrain is too challenging for a wheelchair, and can accommodate two small kids, please comment.  Both E and Viv are close to 40 lbs, FYI.

Anyway, we had an awesome time as usual!  Here are some of my favorite pictures!

Vivian insisted on standing on a little hill

Fam Sunflower picture!

We tried to do EVERYTHING this year--last year we ran out of steam for the corn maze.  With the stroller, Elena and Vivian lasted longer.  Elena had trouble in some of the same areas--keeping her feet on the tractor bike pedals, trying to get on the bouncing pillow.  We had some successes too, like navigating deep hay and getting a running start on the zipline.

Viv has a bit of a competitive streak

E loves the zipline

Ready Aim FIRE!

Both girls had a chance to fire the pumpkin cannon.  Vivian was the first one to hit the target!  She won a free bag of kettle corn!  Elena was chosen to fire the BIG cannon (they pick one child per hour)--and hit the target too, winning us another bag!  They were the only kids I saw there to win!

Falling off the ropeswing into the hay

 Vivian was chosen to be our guide for the corn maze.  She definitely got us lost.  Lucky for us, Elena thought it funny (instead of being too tired to see the humor) and we all had fun as evening came.

Where's Vivian?

My Pumpkins


I let the kids pick their costumes.  Normally they pick ones that go together, and this year was no exception.  Even though I am a classic Star Wars Nerd, I had no influence in their choices.  Yes, they are homemade--Viv's is mostly cardboard and paint (she refused to model for me, so the headpiece didn't fit on quite right) and Elena's is recycled plastic and paint, put on like armor with painted duct tape.  It worked out better than I expected!  No headpiece on Elena--I figured it wouldn't work out with her glasses, and this took so long to put on I didn't have time to put gold makeup on her face and make her crutches black.  No big deal.

E is C-3PO and Viv is R2D2

I expected Elena to last about an hour (previous years it was 2 hours), and she surprised me.  Again, 2 hours, and again, no carrying!

Vivian's Birthday!  

Vivian had her 6th birthday (!) celebration!  She chose a Fairy theme, so we made Fairy houses, played outside, and had a mini scavenger hunt.  Everyone enjoyed good food and great company and lots of playtime.

Dear Vivian,

Happy 6th birthday to you, my little ball of entropy!  You love fairies, legos, Barbie, and computer learning games.  You love being in Kindergarten, even though you read like a second-grader!  You are so helpful at home, and patient with the rest of the family (most of the time!).  Your favorite colors are still purple, pink, and white (in that order) and you want to be a veterinarian when you grow up!  You love baby animals, especially four-legged furry ones of all types.  You can't wait to lose your first tooth, and are looking forward to the cold weather.  I promise I will get you into a dance class as soon as I can!

We love you to pieces, sweetie darling!

Mommy, Daddy, and Elena

Thursday, October 30, 2014

Help! Multi-level surgery to help crouch gait

Hi Doodlers in blogland,

I've been thinking about Elena's worsening gait.  Most days, it's bad.  Feet splayed out, dragging, slow.  There is a helplessness creeping up in her.  So it's time.

We have two orthopaedic visits this month (different docs--time for second/third opinions), where I plan on discussing surgical options.  I'm thinking way ahead here to the classic multi-level approach (hamstring lengthenings, femoral osteotomies, possible hip osteotomy, etc.).  This is the worse-case scenerio, I think.

How bad is it?  Anyone with experience out there?  I am not necessarily pro-multiple surgeries, but I want to arm myself with information.  Pros/cons?

I am also considering things like PERCS (everyone can pipe down about NJ's Dr. Nuzzo.  I'm not counting him out, I just have a very difficult time believing 100% success rate with no follow-up from his patients).

I am also tentative.  I think surgery is the right call, but I'm not sure which kind, or when, and how long between this and whatever is next.  I plan on having Elena weigh in here too.  She is scared to death of surgery (I think she'll be relieved once a procedure is over, and she'll remember it's not that bad) but I want her to have understanding of why, when, and have her agree that whatever we do (or don't do) is the best for her body.

I am particularly interested in those who have had femoral/hip osteotomies prior to puberty and then how that worked out during/afterwards.  I need data!

Please comment.  I value your experiences.  And as always, thank you for reading!