Monday, September 21, 2015

5th Grade Field Trip

Hooray for the first field trip of the year! Elena's school went to a nearby camp for a challenge course day. Her team and I tried to plan the best we could--but the camp would not give us specific information as to the day's schedule and terrain. Parents were asked specifically not to come as chaperones. Two days before the trip, I called the camp and tried to get my questions answered--they were not concerned about Elena's mobility. I have been to that camp. Their idea of accessibility is great, if you can walk. The terrain is steep everywhere, nothing is paved, and the "ramps" are either mulch, gravel, or woods, with scattered steps. The staff seemed to think I was worried about Elena handling the challenge elements; I was concerned about traveling to and in-between them--they are between 300 and 600 feet apart, through hills and woods. They assured me if Elena got tired or complained of pain they could put her in a wheelbarrow. I was not pleased. I told them to expect me at the field trip, which they were happy to oblige. E's teacher was happy I'd be there. I packed everything I could think of--wheelchair (although I figured we wouldn't be able to use it), foldable step stool for her to take sitting breaks, water, her adventure vest (in case she wanted to carry small things), and thought I'd offer piggyback rides if she preferred that over the wheelbarrow if she got tired (wasn't sure how that would go, given my bad knee, but I'd manage).

Thursday morning I went to leave to meet them at the camp...and couldn't find my keys. Couldn't find them--looked everywhere...and figured, well, I'll just have to get to the camp when I can. After a very long, emotional hour, I did find them. I finally arrived to meet up with E at the second station. The terrain is no joke--completely wheelchair inaccessible, and very challenging for a knee reconstruction patient.

Elena was fine. I put her neoprene pads on her crutch handles--helps cushion her palms, but they are too hot for everyday use. She liked that, but didn't want the stool or any other assistance. She was relieved I was there (she was expecting me), but was happy to tell me she did not need my help.

She didn't need me all day. I mean, I gave her a sip of water every now and then. But mostly I was available, but invisible and unnecessary--the best kind of field trip chaperone, right???

The students had lots of problem solving as a group for their challenges. They had to think things through as a team, and it was really awesome to see them succeed. All the challenges had a physical element, and Elena was not involved in carrying anything--but she seemed content to be a part of the team and had her ideas heard, she was not afraid of speaking up. She never fell, and even though she lagged behind walking between elements, I did not get the impression that she was left out.

Unfortunately the challenge elements weren't mapped out around the camp to minimize walking. This would have been really helpful for everyone, especially Elena. She was tired, and her group ate lunch last. Her group was also last on the biggest challenge, the climbing structure.

She went last in her group--which was fine, she got a nice sitting rest and ate a good lunch. I taped her hands (we learned she gets blisters very easily during her climbing study this summer, so I made sure to bring some) and made sure her harness and helmet fit (she's the smallest student). The climbing structure itself was too large for her--I knew she would need extra assistance on belay since she could not reach some of the climbing obstacles. The counselors told each group if they wanted to do the zipline (!) they would have to get to the top.

Climbing, determined and brave

There is a "catch rope" you have to drop near the end of the zip line. If you forget to drop it, the zipper would hit the rubber stop on the line (perfectly safe, but not as comfortable) and then each student was helped down by a ladder. I was worried that E would forget to drop the rope (she didn't), but just took a deep breath and decided she was more like her classmates than unlike them, and waited.

Look at that smile!

She walked back, the last zip liner, a triumphant look on her face! I was stunned she made it the whole day (I even left early). She really didn't need me (last year this would have NOT been successful). She did not complain of knee pain after school, despite being absolutely exhausted.

Wins all around!

Surgery consult, TherEx report, and Where we are Right Now

As many of you know, last year was a tough one for Elena. The knee pain issue was a huge one for her and our family. After seeing 4 different doctors (some several times), here is what I learned. Keep in mind, this information gathering took well over a year.

1. Elena had pretty bad knee pain. By "knee", I mean the area up/down/all encompassing her knee. Because of her high kneecaps (due to crouch gait--quads constantly pulling up on the patellas) sometimes it's hard for me to figure out if this is a muscle issue, connective tissue problem, or bone/alignment problem. My impression is the doctors didn't always know either.

We started with our main ortho, which assumed it was tendinitis. Elena got a new compression brace that was supposed to help retain her kneecap (a little; I don't think this really worked). It was hot to wear, but I think it alleviated pain mostly b/c it restricted her movement.

E complained of pain several times a week, ranging from pain level 2 to 7. I consider this extremely significant b/c I think she has a high threshold for pain, and decreased sensitivity due to her rhizotomy at age 4.

2. We finally figured out that her kneecaps were fractured. Same injury--most likely not from a fall, but from stress forces from crouch. Bones pulling apart, I imagine, is quite painful. I was angry an x-ray was not originally ordered (this was discovered during our third different ortho doctor visit). My impression is that this isn't terribly common, but it's not a huge surprise to doctors when this shows up on an x-ray. While it is's not worth fixing kneecaps unless you can help alleviate the cause of the fracture. Which means getting out of crouch.

3. NO DOCTORS AGREED. This was maddening. I am trying to make the best decision I can as a parent, but it's very stressful when you get conflicting recommendations from my best advisors.

So, here we are, nearly a year later. I have scheduled, then cancelled, two procedures for her. I finally got a consensus with the second ortho--which I initially felt good about his recommendation (tendon lengthening/knee capsule release) but I wanted to report why the other two procedures have been taken out for consideration.

Plan A: Do nothing. Ortho1 says E's knee pain "wasn't that bad" (I vehemently disagree). PT takes breaks to let E rest and try to minimize pain.

Plan B: Knee capsule release (cut to allow knee to fully straighten), tendon lengthening, possible hip flexor lengthening. Would be 6-8 weeks in full leg (not hip) casts. Ortho1 strongly discourages this idea.

Plan C: Ortho3 also discourages plan B. Recommends dual distal femoral osteotomies with patellar tendon shortening to bring down kneecaps. This plan involves much longer recovery (obviously). It is now springtime. PT introduces Therapy Exercise Program (TherEx), to work specific muscles to help postural strength. It's a lot of homework, but we do it. I am doubtful it will do more than keep the unsatisfactory status quo. E started seeing a massage therapist.

Plan D: Ortho1 changes mind and says yes something should be done to alleviate crouch. Recommends growth plate tethering in both legs (in essence, keeps the front of knees from growing while allowing the backs to grow--effectively "growing out of crouch". I worry about introducing a new bone deformity and look for someone to support this, as Ortho2 and Ortho3 do not).

It's been 2-3 months, and much to my surprise--Elena's crouch is lessening. I attribute this to the TherEx program, something I had close to zero confidence would do much of anything. Summer brings new challenges, more rest, more opportunities to stretch and move out of school. Elena's knee pain has lessened, her kneecaps are still high (I do not really expect this to change) but she is moving very well and hardly complains.

Last month we travel to Alfred I Dupont Nemours Children's Hospital, under a recommendation from our regular pediatrician (who doesn't know a lot about CP, but seems to know Elena better than her specialists). We see a developmental pediatrician and Ortho4. It's a lovely visit. Ortho4 disagrees with  Plans C and D. He agreed with Ortho2 who said that the distal osteotomies wouldn't help her crouch, and there is a significant danger she would end up less mobile than now. He said that he has done several tethering procedures, and in his experience with CP kids like Elena, after a year (or so) when the plates are removed, there is a net zero gain--growth and spasticity don't mix well, and the tethering basically kept the crouch the same instead of getting worse after it was all over. He supported Plan B, almost identically (I didn't tell him what the other doctors had recommended). He was confident this would lessen her crouch, but also said there was no rush. He does recommend doing procedures to achieve her ideal posture before puberty, if possible, to try to establish good posture before her weight distributes differently (I definitely support this). He says her hips seem fine, and as long as she is not letting pain get in the way of her doing things, waiting is fine. He says if she has to opt out of things she would like to do because of pain or endurance, that is when surgery should be strongly considered. He said osteotomies would probably be a better choice if needed as an adult. (I can stress enough how wonderful the docs were at Dupont; they always spoke to Elena, the patient, first; it's obvious they specialize in children, and it's refreshing and wonderful--our visit there was fantastic.)

So. It's now almost Fall, and Elena is in 5th grade. Currently she is not complaining of pain and she is moving better than a year ago (amazing!). We are still doing TherEx (but have slacked a little), she wears Dynasplints at night on both legs (still doesn't make it through the night, ~4 hours is average), and we've brought the stander home from school to use at home (we'll end up using it on average 5x/week, for about 30+ minutes at a time) at Elena's request. Extracurricular activities are PT, and hopefully one class (gymnastics, yoga, robotics, or art are all being considered). I'm going to start taken weekly pictures/walking vids to see if I see her posture/gait significantly declines. If so, we'll look at doing something before middle school.

This has been a stressful, rough ride for the past year. I was freaked out I'd miss a window to help her. The biggest lessons I've learned are 1) take a deep breath, and try to be patient; 2) give your physical therapist TIME and opportunity; 3) information is power, even though experts may not agree; 4) slow down and try to enjoy the moment. Easy to reflect on that after a long time...hopefully I'll remember this next time!

Wednesday, September 2, 2015

School's Here! First and Fifth Grade!

Happy First and Fifth grade!

Best I could get with the giggles

Both girls were very excited for school to be back in session. Now that it's been a few weeks, I feel like I can give my back-to-school report.

Vivian loves school.  She's very bright, I worry a bit of her being academically bored--but we'll handle that. No real concerns here.

Elena, on the other hand, needs attention. I am in regular contact with E's educators and principal, so we had worked out a plan for fifth grade. Of course, things got rearranged at the last minute. Overall it's good. Elena's fantastic fourth grade teacher ended up moving to fifth grade, and E was placed with her. I'm very happy about this. "Looping" is wonderful, provided it's a good fit, and it's a huge relief not to have to educate a new teacher about Elena's specific needs. The bad surprise was Elena doesn't have an aide. 

You read that right.

Her regular classroom aide (she has had one every previous year) wasn't signed enough hours with E to keep her gainfully employed. At first, I was shocked. But...maybe I shouldn't be. Elena isn't the only child in the class who previously needed an aide, and those other students have learned to handle their specific issues on their own. I started to bristle, figuring that I was going to have to get all "IEP-legal" but that wasn't at all the case. If Elena needs an aide, they will make that happen. They are trying to determine if she really needs one.

And I started thinking, well, it sure would be great if she didn't. Let's try it.

So far, things are going very well. It helps that the fifth-grade classrooms are as central as they can be; Elena's walking demands are less than previous years. She is working on one-crutch walking so she can carry items (some issues there, like decreased speed and hip turning inward, so that might not work out very well for regular school activity). There isn't a full-time aide in her class, but there is someone assigned to help E at certain times of the day--on/off the bus (carrying), lunchroom (carrying/seating), and gym (still working this out). Elena is enjoying being as independent as she can, and wants to be like her peers (no hulking adult presence). Her teacher does notice her fatigue at the end of the day, so Elena's needs may change. Also, E is better than ever with vocalizing her needs (being tired and needing to sit down, get a drink, carry something, etc.) which is absolutely fantastic. She also has a new school PT who is offering some great seating solutions (dynamic seating, re-energizing strategies for mid/late school day) and E's now under watch of the school OT for her non-verbal learning disability/OT re-energizing techniques. It's really been great so far. 

I've had three impromptu meetings with her IEP team/educators and they are a great group. Very attentive, quick to respond, offering new ideas and looking ahead to prepare us for middle school.

ElenaWatch continues...

Round up, before school

Well, after the beach, we rounded up All Things Summer. (Also, before the beach the kids went to Camp Holiday Trails--both of them (!) for a week of sleep-away camp (!). They had a great time (I knew they would), and I had more work done on my knee (mentioned briefly in the beach post).

Post-Beach "Camp"

The girls both went to CoderDojo; a free (!) electronic/computer camp for public schools. They *loved* it. I was a little nervous at first, b/c there were a lot of kids who have never been around a disabled peer, and parents (in general) did not stay with their children. I was worried Elena wouldn't get help if she needed it. 

I was almost immediately approached by one of the women in charge, who started off greeting me with "I am so glad you are here!". She was overjoyed to see Elena there and told me not to worry about a thing. Turns out her son, 16 years old, also has CP. It was wonderful to have someone there who understood my concerns. The other kids were absolutely awesome, by the way.

The tasks were a little advanced for Vivian (conceptually difficult), but she enjoyed the arduino boards and the LED sewing projects. Elena liked everything-mixing music, Codu, 3-D printing (she tried to make a fan that she could use later with the arduino motor, which was admired by a lot of her peers), and she was able to complete a few sewing projects (needles can be very challenging for her-but she used needles AND pliers!). 

Troubleshooting the arduino motor project

E making LED "wearables"

Vivian working the arduino LED project

Northern Virginia Trip(s)

Vivian wanted to go to the American Girl store to spend her hard-earned money; she has never been, and had been saving up all her pennies after she saw a catalog in the mail. She ended up buying a doll violin (she wants to take violin lessons). After that, we stopped by Clemyjontri Park, an awesome accessible playground.

Climbing around

Viv escaped the maze!

I especially liked the underground sound tunnels this time--we tried to play "telephone" all around the park. Vivian wasn't interested, but E, Grandma, Grandpa and I had a giggly time! If you are close to McLean, Virginia and have any interest in checking out an accessible playground--GO TO CLEMYJONTRI PARK. It's awesome.


Summer Harvests of all sorts

We took advantage of a great summer morning and took off to a peach orchard with some friends; we were the first ones out there, before it got too hot (and it got hot!). Lots of peaches were consumed, and lots more ended up in our freezer.

Peach picking with friends!

Someone ate a bad peach

Rounded up the last few berries of the season

We spent a good amount of time at the pool. Vivian passed her swim test (her own New Year's Goal!), and Elena has been working on her swimming also. She can make it half of the distance required for passing the swim test; she has a decent technique, but little endurance. We had another pool "close call" just a few days ago, when she really looked great stroke-wise, but when she got tired, her feet were not under her body (more of a diagonal) and she kept swallowing water at a depth where if standing properly she could touch the bottom of the pool. So, water awareness could use some work also--but Elena is certainly making good swimming progress.

Lots more is going on, (school, doctors, etc.) but that's for another post!

Sunday, August 2, 2015

Beach 2015

This post is overdue...everything takes longer these days!

We headed out over the 4th of July to Litchfield, NC for a beach vacation. I knew this year would be different; Elena hasn't been moving all that well, and neither have I. The week before the beach I had another knee surgery (closed manipulation; they bent my knee all the way under anesthesia), which helped immensely, but riding waves was a non-starter. Sand was harder for me than for Elena, and I managed to do some shin-deep walking in the waves to get knee exercise. In general, Elena and I had the same territory, but she was faster than me.

Everyone had a great time. Great company, wonderful location, gorgeous weather.

So Happy

There were some dangers, though. There had been many shark sightings (more than previous years), and despite the fact that sharks are always around, we didn't spend much time in (deep) water. I also blame my knee, as I wasn't able to venture into the waves to supervise the kids. Still, Elena and Vivian spent a lot of time playing in the shallows. I could wade with them or watch from up higher on the beach. While I was in the shade, I saw Elena get up and walk to our beach chairs-with a pretty mean face.

Determined face and terrible gait

She doesn't typically move like that. I knew something was wrong. She sat in the chair, and started to cry for me--obviously in distress. Turns out she was stung by a good-sized sea nettle (I got a picture of it in case we needed an ID) while she was on her knees in the water.

The girl who saved herself

This is a pretty big deal--in years past, E would have sat there, with the jellyfish still stinging her, until I arrived. In spite of her crouch and difficulty moving, she removed herself from danger. That is HUGE! I was sorry she was stung, but so so proud of her for taking care of herself. We saw to her sting, and within an hour or two she was back playing--albeit with a pretty red and tender leg.

Beach combing

We brought E's tri-foot "rugged" crutches again this year. These are our "spare pair", ones we don't bring indoors. They still had sand from last year, and some rust in places. I'm happy to have these (they were donated to us) so we don't ruin E's main pair of crutches. In general, E used these to navigate to and from the beach house, and if she was going to walk to a nearby shell patch. Otherwise, she walked without them (not well) or was on her knees in the surf.

Cast fishing

Shell hunting

Shell tiara

The wildlife was better than ever--we saw (and held!) sharks, fish, sea urchins, starfish, and snails. We saw dolphins, a stingray, crabs, pelicans and jellyfish. We enjoyed fireworks at night on the beach. We dug holes, rolled in the waves, and enjoyed games and relaxation in the beach house.

Walking in the surf


Viv in her "tiny pool" before high tide

Tidepool hopping

Viv caught her own waves!

Blacktip Shark!

The beach time was very different for me this year. I was unable to carry much of anything, since simply walking in the sand was extremely difficult for me. I continue to be extremely thankful for the help and support of our family, making this trip possible and enjoyable for everyone. I was really proud of Elena for getting herself to and from the beach house!

Wave Play

Sand Temple

Beach Sunrise

Thanks to a great crowd this year at the beach--we loved the location, the family meals, watching the USWNT win the World Cup, playing games, and our annual beach puzzle. We loved watching baby G enjoy the beach for the first time! And more than anything, thanks for the wonderful company!

Friday, June 12, 2015

Welcome Summer!

This week Elena and Vivian had their last day of Fourth grade and Kindergarten, respectively.  Both are ready for summer!

Welcome Home for Summer!

This year has been HUGE for both kids.  Vivian loves school, and was totally ready for full school days.  Halfway through the year, I let her join an after school activity (tap dancing). She is very bright, is a voracious reader, is a quick math study and loves to play with friends. She has grown leaps and bounds socially. My only concern for her is that first grade will not be challenging (we are pursing options about that).

Elena had a banner year. Fourth grade means real grades, not just a number system for effort and mastery. Elena struggled with math at the beginning of the year. She studied and practiced hard, and with the help of her Math Coach, she ended up finishing this year with straight As!  THAT IS HUGE. She worked through lots of knee pain. She auditioned for and won the lead in the school musical and was AMAZING. We had more playdates than ever. She passed all her SOL tests--for the first time EVER! She has grown more responsible, more mature, more accountable, and more social.

Both girls are healthy and happy, enjoyed school--but very ready for a well-deserved break!  Every year I make them a chalk welcome on our driveway. They enjoyed running all over it. We've made our Summer Bucket List, and we're ready to start checking them off!

Chalk Work under fire

Water Fight

Water Fight