Monday, June 30, 2014

Baltimore Aquarium

I have been wanting to take the kids to this aquarium for over a year.

So we finally went!  Mid-week, and my dad came with us.  I meant to take Elena's wheelchair with us--but an hour into the drive, I realize I forgot it.  They have a few they lend out, so we grabbed one.  I wasn't sure if we'd need it.  I know Elena can (at least, in the past) walk for miles--but since she's been so crouchy lately, and there's not a lot of seating inside, I wanted to have one.  It was a good decision.

Big Teeth

Elena was excited to take pictures, so she wore her Adventure Vest.  There was a lot of walking, but not too much at once.  The aquarium wasn't too crowded, and people were polite (especially the staff).


Vivian really wanted to see a puffin and a lion fish (double check!) and Elena really wanted to see sharks, jellyfish, and dolphins (triple check!).  My favorite part was the little fat jellyfish tank--so soothing and relaxing.

Viv shared the wheelchair

There was also a little play area for kids.  We found it at the end of our almost five-hour visit.  Both Elena and Vivian found some extra energy to be creative.

Puppet show!

Proud puppeteers

Turtle Vivian trying to snack on Jellyfish Elena

Post-Aquarium Ice Cream

 Big thanks to Grandpa for being on wheelchair duty; the biggest hurdle was fighting foot traffic to get back to the elevator on each floor.  Overall I feel like Baltimore Aquarium is pretty wheelchair friendly, provided you go on a day that isn't overcrowded.  We went on a Tuesday, and public school was (I think) still in session (their year went late b/c of snow days).   We had a great time!

Summer Start-Up: Massive Recap Edition

We've been busy here!

We said goodbye to third grade.  We are still waiting on results from Elena's SOL tests; she took it paper-pencil (instead of computer).  It has to be "hand-scored"; regardless, I don't know why it is taking so long for us to get her results.  Her attitude was good (which is really all I cared about) and I am glad they are over.  We were really looking forward to summer break!

Viv and I "sunbathed" while we waited for E to get off the bus

Water fight!

We went strawberry picking!  We look forward to this every year.  Unfortunately, we missed the major picking time (!) and ended up with only enough for eating (not enough to make homemade strawberry jam).

Berry Pickers

I went to Chicago for a long weekend.  I went to the Spring Awakening Festival with a good friend, and spent some time with my sister.  Vivian had a rough emotional time right before I left; she made me a card (before her hours-long meltdown) that said "Have a good time".  I brought it with me to show her that I was thinking of the family, and enjoying myself at the same time.

At Lake Michigan
At Yoga with Sis

Love The Bean

 Elena came home from week-long sleep away camp.  I know she had a great time.  I don't know exactly what she did, b/c the only thing she elaborated on was the camp songs.  At pickup, counselors that know me mentioned all the great things she did (climbed the rock wall without help, for instance) and we hear from time to time "I did that at camp" or "when I go next year".  So, I guess that was a win!

E and counselor Skyler

Elena had another gait lab done.  I haven't received the results yet, so those pictures will be in another post.  But, the hospital was moving into a new building, and they didn't want to haul everything--so they gave us a new stander.  I had to improvise a bit to get it working (and I think it's fine--we'll see).

Gecko--front view

Gecko--side view

Thanks to a recommendation from our PT, Elena is finally taking swim lessons!  Jason and I have been able to spend time teaching E a few things, but it is difficult for E to build on a skill.  As in, she can kick fine, but as soon as you add arms (or blowing bubbles) her form falls apart and she sinks.

E's lessons are in the warm-water pool at our gym.  They are private lessons; very expensive, but I think it's money well-spent.  She is teaching E skills and giving her a LOT of confidence in the water.  Elena has been able to practice her skills in the neighborhood pool, which is outdoor (cool water--she is more tight than in the warm pool).  Being able to move more freely in the outdoor pool is new for us.  Also, since Elena (and Vivian) can now comfortably stand in 3 feet of water (standard pool depth), this means neither child needs a hulking adult presence when they are playing with peers.  That's a big deal.

Patient Megan

With me home, we go to the pool several times a week.  It's really been wonderful.

Pool cuties

 And that's just the beginning!

Thursday, June 19, 2014

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.  

Saturday, June 7, 2014

Third Grade Campout

Elena's school has an overnight camping trip every year for the third graders.  This year, it was almost 50 kids.  I can't say enough how great these young people are.

I went as an overnight chaperone; it was unspoken, but understood, that I would be there mostly to help Elena.  There were plenty of other parents there, and almost everyone knows us (Elena is hard to miss).

Camping is not an easy task for us; Elena can't carry her gear, she requires extra help, and is slow on difficult terrain.  But she loves it.  I love that she loves it.  This site has cabins and bathrooms, which was a huge bonus for me.  But it rained A LOT.

The kids had a great time despite the weather.  They played all sorts of tag/chase games (not a good fit for Elena), had board games, crafts, and general outside time when not structured with school activities.  Elena's favorite was dissecting owl pellets--hers actually had a very large rodent skull, and she was super excited to show and tell us all about it!

I arrived in the late afternoon (after everyone had been there a few hours).  I dressed Elena in her Muddy Buddy outfit--since she's prone to falling in slippery/uneven terrain, and it's waterproof.  She loves it, as it basically gives her permission to get as messy as possible.  The only wet part of her was her shoes--a big difference from her waterlogged classmates (and other chaperones, including me).

Rainy Day Action Wear!


The evening activity, after dinner, revolved around the campfire--which, amazingly, did take place thanks to SB keeping the firewood dry during the rain.  Prior to the fire start, the students were put into groups to think of a name for themselves and perform a skit.  I loved them all--they were very creative, and was pleased how happy Elena was to be in her performance!  Earlier in the day each student drew a name of a classmate; they made a bracelet for them, and had to write something (positive things) about that person.  There was a campfire ceremony where the kids read aloud their message about a classmate.  We sang songs and made s'mores.

Pre-Campfire Conga Line

Throughout the day and into the next, Elena was tired; her stance was poor most of the time.  I had a log for her to sit on, or I knelt beside her and she used me as a chair.  She wasn't the only one; there were a lot of yawners, and I was actually quite comforted when Q fell asleep during the bracelet ceremony, sprawled all over his dad.  When nine o'clock rolled around, the girls in our cabin fell asleep fast.

We had a fabulous time.  These kids are amazing--it is obvious they care about each other.  I am always surprised by this.  I shouldn't be--it's a discredit to Elena's classmates, educators, and their families.  Maybe in a world where I hear about so much bullying on the news, or emails where inclusion is a constant fight, it's hard to believe our experience is real.  That's a testament to this school, staff, students, parents, and neighbors--a good reality check.  Thanks everyone!

Friday, May 30, 2014

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.

Wednesday, May 7, 2014

SOLs and other things

Welcome to May in our house!

SOL testing, for those abroad, is short for Standards Of Learning for a particular grade and the tests are government mandated each year.  Third grade has more tests (four in may, many over several days) than any other grade.  There are many parents/districts in an uproar over these tests.

Elena has a hard time with testing.  We are working out "kinks" to figure out her best testing situation--seating, duration, breaks, computer v. paper/pencil, etc.  There are a lot of learning opportunities here.  Your comments have really helped, so thank you.  I have brought them up in IEP meetings and I've spoken to Elena about them.  The biggest issue right now, is, unfortunately, test anxiety.

E's first test is tomorrow.  She is doing well in school (on grade level, very high marks in everything.  Her weakest area is math, but she shows tons of improvement).  As much as I try to reassure her that we love her, we are proud of her, we are not worried about her score, and that we want her to try do be the best Elena she can be--she broke down tonight.  It's heartbreaking.

But that's not the worst of it.

Look, you can throw theories out there that E's brain damage/CP is related to her anxiety/test taking issues, whatever.  She has extra tutors.  I don't love all the time spent tutoring, but like everything, it's finding a balance--and she seems cool with it.  But when E comes home with stories about other kids breaking down, giving up--eight and nine year old KIDS who GIVE UP and stop trying--it breaks my heart.  That's not what school should be about.  Elena is not one of those kids, but I never forget that she could be.

I stand by my statement that standardized tests are not inherently bad--there needs to be a way to ascertain what kids know, and it takes too long to do that individually.  Teachers are already overspent when it comes to time, and underpaid when it comes to effort.  Our school is fantastic.  I can't imagine a kid like E in a school that has less resources.  Fact is, these SOLs are hard.  I prefer the word "challenging".  As a third grade kid, I would have done well on these--but I would have had to read closely, as not to get tricked by the questions (which can be easily done if one skims them).  As an adult, I still have to read closely and frankly I'm surprised at the complexity of the questions for a third grader (surprised? impressed?  worried?).

Anyway, this has been our life for most of April.  May is full of tests.  We try our best to "be cool" at home, doing our thing (play, homework, dinner, bath, stretches, etc.) without trying to stress out Elena (she does a lot of this on her own), but I'm not sure how to best support her.  At worst, it's only a month, right?  SIGH.  

E, I wish you the best.  I'm not worried about the worst.  Hang in there, kid.