A Rough Start to Summer

Our summer started off well enough--Elena was ready for the last day of school!

After bus surprise!

Two days later she developed a cough.  The same day, she had a well visit at her pediatrician.  Overall her development is going well, she's on her regular growth curve.  We've worked hard at getting Elena to gain weight (seen many nutritionists) and stay strong (lots of therapy and exercise).  She is nicely on the 3rd percentile for age (8), height (44 inches), and weight (42 pounds) and a BMI score of 16.  

Then she got sick.

Sick with some random virus, nothing too crazy--I know because I got it, and so did Vivian.  Started with a cough and fever.  Every time Elena gets a fever, we worry about slight dehydration--which inevitably leads to constipation.  We give her lots of fluids (adding extra Miralax) and were ready to wait it out.  

She started vomiting.  I thought it might just be a stomach bug, as she felt a little better the next day.  The next night, she started vomiting again.  This has happened before.  The last time this happened, again, it was after a short illness, and the nighttime vomiting continued for over a week (with some watery stool).  Her pediatrician pieced together the puzzle-her bowel was mostly obstructed (only allowing liquid to pass).  During the day, her general movement allowed some bowel movement, but when she went to bed for the night, her food and drink had no where to go--so she would get sick.  

This time, we just couldn't get any liquid in her--she threw up everything, including sips of clear liquids.  She did not have a fever.  After close to 24 hours of this, I took her to the ER.  I didn't think she was super sick--I figured it was a bowel obstruction, like before--but I assumed that someone in the ER could help her (if nothing else, administer IV fluids).  They weighed her when we got in--she was 37 lbs.

Elena was given anti-nausea medication.  It helped her not feel sick to her stomach--but didn't stop the vomiting (anything taken by mouth just didn't have anywhere to go!).  IV fluids did perk her up a bit, and she was finally able to pass urine.  She had a chest x-ray (b/c of her cough), which was clear.  Her abdominal x-ray was very informative.

from http://simplehealth-healthbeautywellness.blogspot.com/2013/05/colon-cancer.html

Elena's colon was impacted--with no visible air pockets--from the rectum to the splenic flexure.  My guess is this is significant, but not serious.  

Special Visitor:  Dusty the Therapy Dog

Another special visitor

Since we couldn't get her to keep any laxative liquids down, she got enemas every two hours to try to remove the blockage.  Two were administered at the hospital; they had no effect.  Her doc and I agreed that we could do this at home--she'd probably be more comfortable, and possibly start to move around which could help her situation.  I requested an IV bolus, and we headed home with her nausea meds and the plan to take steady liquids by mouth (with a laxative mixed in) and enemas every 2 hours until they were productive, as long as she was awake (sleeping took precedent over any of this).  

Eight enemas later, they started being minimally productive.  By this time, Elena could drink small amounts without the danger of vomiting.  She could eat a little.  She was moving surprisingly well, given her inactivity for the past week--being fatigued/immobile is horrible for a spastic cp kid, as inactivity makes tightness worse.  I gave her lots of leg massages and we tried to play games in different sitting/laying positions.  

After enema #12, she was out of patience.  (Poor E!)  She woke up the next morning and was able to pass very soft (hardly solid) stool, unprompted.  Her doctor said to continue administering one enema/day (and continue her laxative) until large stools are passed (presumably responsible for the blockage).  This is where we are today.

Obviously, I don't want to repeat this.

Elena eats a balanced diet.  She loves veggies and fruits.   She takes a daily dose of Miralax (and I'm not interested in conspiracy theories on if you think this stuff is bad--her life is worse without it, period).  She has been on the same dosage of Miralax (2 tsp in the morning) since she was 8 months old. 

My thoughts are 1) have her switch water/juice for milk (most of the time--that girl loves milk), 2) make sure she eats yogurt several times a week (top it with chia seeds or something like that, and introduce probiotic supplements?), and 3) give 2 teaspoons Miralax morning AND night.  A friend also mentioned some sort of gut massage--where you gently massage (in a specific manner) to help move things along the colon.

Do you have ideas of what we can introduce to her diet?  (I'm looking for proactive ideas here.)  THANKS!

Night Bracing Summary

There is a lot I'd like to do with the videos below (correct for picture angle, shadows, etc.) but in the spirit of getting this posted promptly, here is the raw cut of the night bracing progression.

My original goal was to coax Elena into wearing her night splints through the night for a period of four months, taking a picture each morning (ideally in the same outfit).  We started on the 19th of February, after our Disney trip.  The official end is tomorrow, June 12th.

Elena has tried very hard to wear her splints (one on each leg) as much as possible every night.  The total wear time (assuming tonight's wear time is average) has been approximately 412 hours over 16 weeks (112 days, so average of just under four hours per night).  This is through sickness (not wearing them, but getting oh-so-tight due to lack of movement/dehydration/etc.), health, seasonal changes, power outages, and a wedding.

I didn't get a picture every day.  Some days I had to work early and Jason took some pictures (most were unusable b/c the angle was too strikingly different).  Some days I forgot.  Near the end, Elena would wake up early and be dressed for school before I had a chance to take a picture.  These last two weeks Elena has been wearing her Dynasplint brace on one leg (nothing on the other) and alternating legs each night.  With the Dynasplint, her wear time is longer, she can get out of bed by herself, and she has more freedom of movement b/c the brace can bend as she repositions herself in bed.  She prefers the Dynasplint.

So--here you go, the Progression Vids:

PLEASE vote in the poll below, or leave a comment:

poll by twiigs.com

Here's my take on our trial.

Edit:  A little background, in case you're new to this blog:  Elena has had three bouts of Botox, ages 2-3 (1st round lasted 6 months; 2nd round 3 months; third round, 2 weeks); SDR at age 4; PERCS (hamstrings) and traditional lengthening (calves) later age 4.  She is currently 8 years old.  She gets several different types of therapy every week and is an active child.  There isn't a whole lot of interventions left for her.  Elena has dynamic tone, which means it kicks in most when she is active.  While E is "at rest", she has very decent range of motion.  In the past E's team mentioned that she could benefit from prolonged stretching.  Because she is so active, the best time to do so was at night.  This was out of the question earlier in her life, as she had serious nighttime issues--for close to 3 years, she cried and screamed for an average of 3 hours per night.  Once that was under control, everyone (including Elena) decided we could try a nighttime stretching regimen to see if there would be any benefit.  E's orthopaedic doctor does not recommend nighttime bracing; he says the literature does not support that there is a prolonged benefit.  My research backed him up; the net gain of nighttime stretching, a minimum of 2 hours per night for a minimum of two weeks only lasted a few weeks before returning to baseline contracture in Elena's diagnosis and age range (any growing SDCP kid, basically)--the research out there on this is pretty scarce (most kids won't tolerate it, and the sample population is already very low for a statistically sound experiment).  I could NOT believe that night bracing could NOT HELP someone like Elena.  I figured any increase of range in motion would be good for her, if she could tolerate the stretching regimen.

I do see a difference.  I see a significant difference in her ability to stand taller and straighter than before the trial started.  I believe this is an objective observation.

As far as the big question--does this ability to stand taller and straighter--a static, supported stand--impact how she generally moves--well, I think the answer is maybe, but not much.

I do think that when she thinks about standing upright and tall, she has better range.  This has to be a conscious act for her.  I do think she has improved her ease of movement, but that could be for many reasons--increased confidence, steady mobility gains, continued varied activities (biking, outdoors, soccer, catching, carrying, steps, better speed, etc.) and I would not attribute this to night bracing.  I also think she is slightly easier to stretch at night (we do a series of stretches and exercises every night), provided she is cooperative (which she usually is).  

She has also hardly slept through the night for 16 weeks.  She would call for me nearly every night to come and remove the brace(s)--not fully awake, but obviously not the best sleeping arrangement.  She did not seem to "get used" to wearing the braces for longer periods of time during this trial--meaning, there was not a steady increase in her hours tolerating the braces.

My opinion?  Right now, I feel like this is a meager payoff for the effort we've made.  I am perplexed that my supposition above--"--that night bracing could NOT HELP someone like Elena" after this trial is ambiguous.  I am happy we've tried it.  Elena tolerates her Dynasplint well now, which I think is a superior stretching brace that I hope to use with her for many years to come.  She has also mentioned that she feels different (better/looser) after wearing her night braces.  My guess is she would feel just fine if we had a nice warm massage/stretch in the morning, regardless of bracing during the night.

Now, I don't know what her movement would look like if she had been allowed to curl up at night for the past 16 weeks.  But we're going to find out, b/c we're taking the summer off night bracing--unless Elena asks for it (which she might).

Strawberry Picking 2013

We love going to pick-your-own fruit and vegetable farms!  We've been to this orchard several times.  This was supposed to be my Mother's Day celebration trip, but I got very very sick Mother's day weekend.  So, we decided to go today.

on our way

The day was just about perfect--not too cold, not too hot, and still some berries left!   Elena spent very little time on her knees while picking berries this year.  Unlike last year, she walked while she looked for berries, and even did some picking while on her feet (using one crutch).

Elena on the berry hunt

Vivian did better this year too.  Last year she ate every one she picked.  She actually got some berries in the box--10, to be exact.  Jason and I discovered that kids can get "jacked up" on strawberries.

Another one not in the box

 

Berry Haul

I tried to make strawberry jam.  I'm not sure how it is going to work out, but I had some great helpers.

Chefs mixing it up

Berry Hands

Flower Girls

Yesterday, my brother got married! Elena and Vivian were asked to be flower girls--they were SO EXCITED! A few months ago Andy and Melissa brought down their flower girl dresses--Vivian has asked almost every day if she could wear it to school. They could not wait for the wedding!

I had a few concerns. If you have a child with CP like Elena, you know what I mean. Will I find appropriate shoes that will stay on? Will she be able to carry a flower basket? Will she fall? What is the terrain like (is there a fabric runner, or is it on grass)? Will she need to stand for a long while? My most immediate issue was what will I do with her crutches? As you can see, they are hot pink. Not traditional wedding appropriate.

I brainstormed for a long time in my head. I settled on using ribbon. I figured it wouldn't fray, and I'd twist it around or make a "tube" with it and hand sew it. I settled on wired wide white ribbon, just to see if it would take shape. It did, sort of. But it was thin, so the hot pink still showed through. I ended up using double-sided hem tape--LOTS of it. First I'd tape the crutches, then I twisted the first layer of ribbon around them. I put on more tape, and wrapped another layer. The crutches sort of looked mummified. I then sewed double-ply fabric flower trim around the crutch joints (where the ribbon wouldn't take), wrecking a whole lot of needles in the process because they ended up being coated with the layers of hem tape underneath. Still, overall, I was pleased with the look--with the exception of the dirty arm cuffs, but I forgot all about planning for that.  Now all I needed was for her to keep these white crutches CLEAN for two days (day of the rehearsal and the wedding).  WHICH SHE DIDN'T, b/c she got them all dirty at recess--she left them on the ground and kids (including her) walked on them while catching cicadas.  A little laundry detergent and water saved the day (WHEW).

you get the idea

As for shoes, I wanted a thick-soled white mary jane flat that had LOTS of buckles and/or straps to try to keep the shoe over her sure step AFOs.  That didn't really exist, so I settled on a very low heel (since she was on her toes anyway, her gait didn't look too bad) and one strong (but thin) strap.  There wasn't much to choose from.  I considered trying to get her orthotist to alter the heel of her shoes (since she has a leg length discrepancy, and we do this for her regular shoes) but I didn't have time.  Elena's foot came out of her shoe a few times, but after we strapped it REALLY tight (it didn't hurt her foot b/c of her AFO) it seemed to be set.  

The terrain was outside (gulp).  The procession was down an old, uneven, sometimes crumbling brick walkway (double gulp).  It was relatively flat, but problematic for Elena if she wasn't paying attention.  She knew she was supposed to smile and look forward as much as possible, while staying safe--she knew the walkway could be trouble.  

Neither Elena nor Vivian carried a flower basket (we had been practicing carrying a basket on her crutch and using the hand to throw things out of it).  Melissa decided the girls would wear flower crowns on their heads instead of throwing petals--I was actually quite happy about that, given the brick walkway.  

Everything seemed in order.  The rehearsal went well, but it was hot--SUPER HOT AND HUMID.  E seemed comfortable with the flower girl duties, but not the heat.  Then it rained.  Then it got cold.  

REALLY COLD.  It was 60 degrees and WINDY--compared to they day before, it was downright frigid.  After breakfast that morning, we took the girls to Gravelly Point--a great place to get close to airplanes as they take off from the airport.  It was pretty cool.

Fast and loud

Three airplanes

Then we all got ready for the ceremony--major excitement on Elena's part.  Vivian was tired (I knew this might happen), so we packed a few snacks just in case.

Me and my girls

Dressed up beauties

I decided we'd take off the girls' sweaters (not part of the flower girl uniform) and they'd have to be cold for a few minutes.  They ended up putting on their sweaters during the ceremony.  No biggie.  

Waiting patiently--this room was warm

The photographers requested no cameras at the ceremony--which makes sense, no one wants their wedding pictures to have photos of all their guests taking pictures with their phones!  So I don't have shots of the actual ceremony.  If I get any digital copies, I'll put them up here.  Elena was AWESOME.  Super great smile, walked slowly, didn't fall, and walked nice and tall.  Just perfect!  Vivian walked a little fast--but she was totally adorable, especially when she wanted to stand with the bridesmaids (she did, until she got too cold and she put on her sweater).  Needless to say, the ceremony was beautiful, and I couldn't be happier for my brother and Melissa.  They are a perfect match.  

Heading to the reception!

 
At the reception, my camera ran out of battery life.   The girls (especially Vivian) worked the room and talked to family and friends.  They both loved the photo booth and seeing everyone all dressed up!  I was hoping that they would last until the dancing started.  I got one dance with Elena--she was extremely tired and I held her.  Vivian was already asleep upstairs at that point.  A few moments after our dance, Elena went up to join her.  It was a very special day--but by that point, both girls were pretty exhausted.  Jason put them to bed while I got to catch up with family and friends, which was great fun.

Congratulations Andy and Melissa!  Thank you so much for allowing us to be a part of your big day!

Second Grade Field Trip

I took the day off work and became a chaperone for Elena's second grade field trip.  It started at the Safari Park (I had never been, but I asked about the terrain in advance), which was about 90 minute's drive from school.

The school rented a charter bus (with a bathroom--essential, and TV screens--this kids loved them) while the parents carpooled.  Elena had a special support for her feet so they didn't dangle while she sat in the bus seat.  She said she loved the bus.

I brought her wheelchair b/c the Safari park huge.  There is a paved animal area, where there were creatures of all types in good sized pens.  Monkeys, tortoises, farm animals, tigers, cheetahs, flamingos, servals, kangaroos--just all sorts of animals!  Elena decided to go on foot.  She wasn't as fast as the rest of her classmates, but kids were all over the place (in groups) and everyone was enjoying themselves.

E and Mom are Llamas

The second part of the Safari park was on a tractor ride.  Each person got a bucket of feed, and we could feed animals that approached us.  They were all pretty easy going (still dangerous due to size/teeth/horns/antlers) and we all loved it!  We are absolutely coming back so Jason and Vivian can have this experience!

E feeds a friendly Bison

Ostrich eggs are HUGE!

After the ride we all ate lunch and headed to our next destination--Natural Bridge.

E points out the attraction

Gorgeous

Elena took a shuttle bus to the bottom of the Natural Bridge, meeting her classmates that had descended a lot of rocky steps.  Everyone then walked up to the Monacan Indian village display* and we had a fascinating discussion featuring Monacan Indians, and natural resources.  During the discussion, I offered my knee as a place for Elena to rest--she was very very tired, and looked like she might fall over (it was also pretty warm all day).  She wanted to walk the way back herself, but we were far behind and she looked unstable.  I gave her a piggyback for part of the way back--I thought she was going to fall asleep on me!

When we got back to the Natural Bridge, she walked again--the rest of the way to the shuttle bus.

Natural Wonders

I'm so proud of E.  She had lots of energy, her stamina was great, and she didn't have any bad falls.  Overall she stayed close to her group of peers, lagging just a teeny bit behind.  Her class is pretty awesome.  I got a great picture of them under the bridge--a great group of kids, all of them.

*One of the tour guides stopped me as I was leaving the village display to tell me "he had crutches just like Elena" when he was young.  He is 42, and has arthritis.

Ortho Roundup: Let's Talk About Hips

Elena had her regular checkup with her orthopaedic doctor a few weeks ago.  Overall he was pleased with her progress.  He thinks that her flexibility is decent (maybe the night splints are helping?), her range of motion is pretty good, and he is glad she is an active, happy kid.

He looked at her spine, and quickly looked at her arm strength/core (hold arms straight and out, several directions, in a sitting position--check; hold arms straight above head in streamline position--almost check; and he unsuccessfully tried to tip her over--check) and was pleased.

Then we got into a discussion about hips.  I brought it up--basically, I use these visits to try to prepare myself for any future surgeries/interventions as best I can.  I don't like the "bad surprise", when you show up at the ortho and all of the sudden you've been told that your kid needs XYZ surgery or else something terrible is going to happen.  So, I'd rather hear WAY in advance, in order to try to prepare myself and Elena.

I already knew that she was at higher risk for scoliosis (she's fine so far).  I also know that she may have hip issues due to her spasticity/crouch.  She hadn't had a hip x-ray since age three (before her SDR).  So, they decided it was about time she got one.

I don't know a lot about hips, but here goes...

At E's 3rd year X-ray, she didn't have much of an established hip ball-and-socket joint.  As kids grow and bear weight (and walk), the femur head angles itself into position into the hip, and carves out a socket (something like that).  Due to E's delayed mobility, her hip at age 3 didn't look much like a ball-and-socket.  Kids with SDCP like Elena (knees caving in, tibial and femoral anteversion) don't develop the right femur head angle and the socket tends to be shallow (imagine what W-sitting does to a hip joint).  This results in something called coxa valga.

http://en.wikipedia.org/wiki/Hip

If the socket is shallow enough and the spasticity tight enough, the femur head can wear away cartilage at the joint and even come out (subluxation).  This can be, but is not always, painful.  The most common surgical fix for this is a hip osteotomy (which wasn't as terrible as I had thought it was) where they remove a small triangular piece from the stem of the femur head and make the angle of the femur head more acute so it fits/stays better in the socket.  This is better for stability, but as with any surgery, there is a net increase in weakness due to cutting through the tissue and bone.

It was my understanding that kids who move like Elena (pretty well, but not great) didn't get hip subluxation and didn't need the hip osteotomy.  That is not true.  We'll have to wait and see if Elena complains of hip or leg pain and then see what's going on (at this time, she does not have pain).  The best thing we can do is try to keep her posture as close to normal as possible and keep her active (bearing weight as close to properly as possible).  I think we are doing that.

I asked if there was the possibility at this point in her life (a small age 8) that with proper exercise/training, we could deepen her hip socket over time.  He said that is unlikely.  Overall he thinks her hips look better than he had originally expected--she may not need any intervention at all.  That sure would be nice, right?

He did say it was almost a given that with her hip joint the way it is, she would develop early arthritis of the hip (early being ~50 years of age).  That made me sad...but I can't do anything about it.

The good news is E is moving well and still making gains.  Her doctor doesn't want to surgically intervene for fear of making things worse.  Wait and see is the plan, and right now, that sounds pretty sweet.