Almost summertime

After an up and down start to spring with our Wisconsin weather, we have had a string of several warm, warm days.  It's feeling more and more like summer these days, but the girls still have to power through a little more school before it is officially summer break.

You would think that by this time of the year, we would be over with all of the colds, flu-like symptoms, and viruses.  But of course we're not.

A few weeks back Anna came home from school because she had thrown up while resting in the resource room.  By the time I got her home, she was complaining of a headache.  The next few hours were difficult  ones in our house.  The symptoms persisted and even got worse over the course of the morning.  Headache and vomiting are not a good combination of symptoms for a child with Anna's medical history.

After a handful of phone calls, a semi-nap for Anna, and a few deep breaths on my part, things settled out for Anna by the afternoon and we were no longer as worried.  In fact, she was back at school the next day.  We still don't have any answers for what caused this particular day for Anna, but we hope she doesn't have another one like it for a long time.

Then on Saturday morning, Kate woke up complaining of a sore throat.  She played in the morning, went to The Lion King, ate relatively normally, but still complained of a sore throat by the end of the day.  Sunday she was still bothered by it, to the point of independently resting in bed in the afternoon.  However, she still played in the afternoon and participated in a family water fight.  By the evening, though, she had a low grade fever.

Monday morning she woke up in tears because her throat hurt.  Her throat looked pretty red and swollen, and she didn't have any other cold symptoms.  The kids had off of school and Kate didn't have a fever anymore, so I decided not to take her in to the doctor.  But by the evening, she was refusing to eat and had white spots on her throat.  Bummer.

Another Urgent Care visit for Kate, this time for strep throat ... in May?!?!  After two doses of antibiotic, she was back to normal (bouncing all over the place), but we still kept her home from school on Tuesday.

After a full five years of zero antibiotics for Kate, she has had two courses now in the past month.  Poor kid.  I must do a better job of remembering that her decreased energy level is our best indicator of how sick she is.

In spite of the crazy illnesses we have had recently, we have still tried to to our best to enjoy the change in weather.  Last week Matt drew a bike course on our driveway for Kate and Ethan.  Kate's course then continued through the yard.  For long periods of time every evening, Ethan and Kate rode around and around the course, while Anna used her walker and walked around and around it.

One afternoon, Ethan and I went for a bike ride on a nearby bike trail.  He had been wanting to ride FAST for a while, but we hadn't had a good opportunity to ride fast for a long period of time (i.e. no stop signs or turns).  Ethan has a blast on this bike ride.  We will have to figure something out for how we can do family bike rides this summer.

Over the weekend we had an impromptu family water fight; it was getting positively hot out in the backyard.

We also managed to set the pool up on Sunday afternoon.

Hopefully it will warm up enough by the weekend for us to play in it together!

This past week was Anna's last week of therapy for the school year.  For the first time in two years, she is going to have a "break" from official therapy visits.  This break will last for about a month before she starts her intensive therapy session at Communication Innovations in July.  Three hours a day for five days a week for three weeks.

Finally, this last week was Ethan's show week at The Little Gym.

This spring he has been participating in the preschool group, instead of the parent-child class.  He has had so much fun and has done a great job.  He feels so proud :)

The Lion King!

Saturday afternoon we went to see The Lion King musical.  "We" meaning Matt, me, Kate, Anna, and each girl invited a couple of friends.  (Ethan stayed home with Grandma.)  This was the girls' birthday presents, party, celebration, etc.

Two years ago we didn't do much to celebrate birthdays.  Last year was the big year for parties.  This year I was partied out.  First, I didn't know how we could possibly top last year's celebrations.  Second, I didn't want to have to plan anything.

Last winter when we learned that The Lion King was coming to Madison in May, we thought it would be an awesome way to celebrate Kate's birthday.  She could invite two friends, see the show, and have a memorable birthday experience.  When I proposed the idea to Kate, she thought it'd be great.  Then Anna chimed in and said that she'd like to do it, too.  Sounded good to us :)

When tickets went on sale, we picked up a handicap seat and three companion seats, plus four seats a few rows in front of Anna's group.  That way we'd be our own groups, but still consider it a "shared" memory.

On Saturday, Matt and Kate picked up two of her buddies from school (both boys, by the way) and drove them into town.  Anna and I picked up two of her friends (who have been new friends as of this year) and we also headed downtown.

Of all of us attending, only one of the boys and I had ever seen a Broadway show before.  Needless to say, everyone was impressed.  The costumes, the music, the special effects.  Amazing.  Even the two first grade boys did a good job of sitting still for the performance!

The girls were both gifted some spending money and they picked out a stuffed Nala and stuffed Simba.  (More stuffed animals, really?)  When we finally got home, they reenacted most of the plot of the story with their stuffed animals :)
 

It was certainly a cool way to celebrate the girls' birthdays.  We will have to keep these kind of "experience" celebrations in mind in the future!

(Since I didn't ask permission of the girls' friends, we chose not to include pictures of them on this public site.)

Bits and Pieces

This is the time of year when everything moves SO fast.  Between end-of-the-year school activities, birthday celebrations, and gardening requirements, it's hard to find time to sit down to document a little bit of life.  I apologize for the randomness of these stories, but I just need to get them written down so I don't forget!

A few weeks ago Kate's school had a crazy hair day.  Although sending her to school in these braids would have been awesome, we actually did them so that her hair would be crinkly the next morning.  I can't believe she slept with her hair in braids like this!

One Saturday in early May, a nearby park hosted an event called "Kids Building Wisconsin".  A variety of vendors ranging from Home Depot, to Lycon cement, to electricians and plumbers, set up different booths with activities allowing kids to get a small taste of the construction/building industry.

Because of the differing abilities of our kids, we split up.  Kate and Ethan went with me while Matt and Anna trekked around together.

Of course Ethan wanted to sit in the cab of every truck he saw :)

All of the kids ended up in the Home Depot tent building their own tool box or flower box.  Surprisingly, our family only had one bashed thumb (Anna's), and all of the kids did a fine job building and painting their projects.

On Mother's day after church, we picked up some lunch from Culver's and went to a handicap accessible nature preserve.  It was a beautiful day, but we are learning that sunny days with little or no breeze are no fun for Anna.  She just gets too hot and uncomfortable without a way to move and cool herself off.  We will keep working on this issue.

Kate and Ethan had an enjoyable time finding turtles, "waterfalls", and seeing all manner of different birds.

Even though our lunch was from Culver's, our dessert was pudding cups :)

I had two memorable parts to my Mother's Day.  First, the girls are old enough now to initiate cards and/or projects for me, instead of having Matt lead the way.  Both girls gave me touching gifts.

Secondly, the whole family helped make dinner!  Kate sauteed the peppers and onions for our fajitas; Matt made the guacamole; Anna and Ethan set the table.  It was great :)

In the afternoon on Mother's Day, I worked on planting more vegetables in our garden.  Our tomatoes were itching to get out of the basement, as were the cucumbers and zucchini I started a few weeks back.  Everything was growing along merrily until this last weekend when we had a FREEZE!  Not a frost, but a real freeze!  In the middle of May!  What's with this weather?

Kate and I had gone around and covered all of the plants we thought were susceptible to the low temperatures.  Surprisingly, we only lost one cherry tomato plant and one regular tomato plant; the rest are still going strong.  The potatoes, however, lost some leaves due to the freeze.  I'm pretty sure the plants are still alive, but it was just a bit too cold for those normally hardy plants.  The broccoli survived without any problems.

We have only a few more weeks of school left.  I think we can make it!  But I might forget about a few more things between now and then :)

Happy Birthday, Kate!

 Kate turned 7 on Monday, May 16.  Ever since she first joined our family, we knew she was a pretty special kid.  Her curiosity, energy, smiles, and laughter add bright spots to any day.  We have been so glad to be a part of her life.

In the last year, Kate has mastered reading and riding her bike.  She has taken an interest in learning how to play the piano, but our home lessons are kind of hit and miss.  She still loves her brother and her sister very much.  She is a very kind friend to others and has grown by leaps and bounds in terms of her self-confidence.  If you ask Kate what she wants to be when she grows up, she will tell you that she wants to be a scientist, more specifically that she wants to study oceans.

Monday started with Kate opening cards and gifts from the family.  When I asked her last week what she wanted for her breakfast on her birthday, she told me that she would like a hard boiled egg ... Kate has never had a hard boiled egg, but I guess she thought they'd be good.  She tried one out on Sunday, decided that she really did like them, so had a hard boiled egg, a smoothie, and a piece of toast for breakfast :)

Ethan and I were able to join Kate at school for lunch and recess.  Kate was a wonderful big sister taking Ethan around to all of the different playground pieces.  At the end of recess, she asked him if he would like to come and play with her at recess again sometime.  Of course, Ethan said yes.

After school Kate played with the gifts her siblings gave her.  We had found a cool lego set of female scientists at the local used toy store, so that was Anna's gift to Kate.  Even though the age listed on the box was for kids ages 10 and up, Kate did a great job putting together all of the pieces, including the lego dinosaur skeleton.

For dinner, Kate requested sausage pizza, cucumbers, and ice cream sandwiches for dessert.  Gotta love this kid :)

We are so blessed to call Kate a member of our family.  We hope that we can continue to help her learn, grow, and mature into the amazing person she has the potential to be.

Prayers for Kate - These are actually the same as last year, but they still hold true today.

Thanksgiving
Please give thanks that Kate is a happy, healthy 7 year old.
Please thank God for all of Kate's gifts: her smile, her laughter, her sense of humor, her intelligence and insight, her quiet leadership, her physical abilities, her empathy, and her faith, among other things.
Please give thanks that Anna and Ethan have been able to have Kate as their sister; she is an incredible blessing to them both.

Requests
Please pray that God continues to watch over Kate and lead her as she grows and matures.
Please pray that Kate will continue to develop her self-confidence so that she can weather the trials of growing up in a "different" family.
Please ask God to give us wisdom and insight as Kate's parents so we can help her reach her potential.

Learning how to walk

"So can she walk yet?"

I don't like that question.  I realize that when someone asks me if Anna can walk, they have the best of intentions.  But it certainly puts me in an uncomfortable position.  Most others don't have the perspective or knowledge that we have regarding Anna's brain trauma and her recovery.  Even those who have some of the information, still don't have the complete picture.  Nor do we, in fact; we keep learning more and more.

So when someone asks me "the question", I try to stay positive and give the short response about how Anna is continuing to make progress, but it will be awhile before she feels comfortable walking independently around lots of people.

Still, it seems like a bit of a cop out.  Shouldn't she be walking by now?  Babies learn how to walk within a year, why is it taking Anna so long?  No one ever asks me these questions, but sometimes I can just feel them.

I'd love to give people a glimpse into how much work it is to learn how to walk again after experiences like those Anna has had.  I like giving the long answer, but I don't think many people necessarily want the long answer when they ask "the question".

So I'm going to give the long answer here, for anyone who is interested.

Learning how to walk is very, very complicated.  The most intricate part, in my opinion, is our sense of balance.

Everyone's brain receives information from three main sources when it comes to balance.  First, your inner ear has special fluid-filled structures to give you a sense of where the ground is; second, your eyes will also be able to tell you which way is down; and third, whatever part of your body is touching the ground can feel the pressure of the touch.

If any one of those pieces isn't working properly, balancing gets more challenging.  For example, try standing on one foot while your eyes are closed.  It's trickier, isn't it?  And you are much more conscious of the changing pressures on the bottom of your foot, right?

All this information is routed through your brainstem up to your cerebral cortex (the thinking part, just in case some of the signals seem to be at odds with each other) before the signals are sent to the correct muscles.  Then, this information goes through the cerebellum, which is that wonderfully complex part of the brain that coordinates all of the correct muscle groups to fire at just the right time to make sure you don't fall over.

Now think about what happened to Anna's cerebellum.  First, there's still a big empty space in it where the tumor was.  Second, the cancer had spread throughout her cerebellum (among other places).  The cancer cells took over the healthy ones and fiddled with all of the connections that were there prior to cancer.

Think that's enough?  Nope.  Radiation came next, targeted very heavily on the cerebellum.  We know that the radiation was very effective on the cancer, but it also damaged the healthy cells.

As if that wasn't enough, at the end of the radiation therapy came that pesky shunt infection.  Just when everything on the inside was raw and vulnerable, the infection came.

Now, hopefully, you have a better picture of why Anna's neuro-muscular system was back to square one back in May of 2014.  Even though the rest of Anna's brain was (and is) still functioning well, all of that balance and muscle coordination had to begin again, and now with a less-than-perfect cerebellum.

At this point, it's helpful to think about how a baby's sense of balance develops.

First, parents and other caregivers play a huge role in helping a baby learn about where the ground is and how to keep from falling..  A child's life begins by being carried and rocked, a lot.  Then, as the baby gets stronger, they are bounced, spun around, turned upside down, etc.  All of these motions help a baby develop the visual part of their sense of balance as well as the inner ear aspect (collectively called the vestibular system).

It's a bit trickier to recreate those kinds of activities for someone who weighs more than 15 or 20 pounds, but therapists (and parents) do their best.

Another major benefit of learning your sense of balance as a baby comes with the idea of size.  When babies learn to crawl, they fall and don't get hurt.  When babies learn to stand, they fall and don't get hurt.  When babies learn to walk, they fall a lot, but have plenty of padding in all the right places so they don't get hurt, or at least not too badly.

Again, it's harder to simulate those kinds of learning experiences when you are farther away from the ground.  The taller you are, the harder you fall, and the more it hurts.  That's where therapists and equipment come in.

It's a miracle that any of us are able walk upright on two feet.  Think about that the next time you take a few steps.

And when Anna finally does learn how to walk again, now we will all know just how much of a miracle that will be.

So it is going to take time for Anna to learn all of these things again, and still ensure that she has a positive outlook on life.  She's getting there, but it will still take more time, and practice.  Her sense of balance is way better than it was a year ago, but certainly not where a toddler's is.


Maybe the next time someone asks me "the question", I should just refer them to this post :)  But that wouldn't be right; sometimes it takes too much time to give the long explanation and, honestly, not everyone wants to hear it.



Thank you, for taking the time to read and understand Anna's life a bit better.

Bike to School Day 2016

Wednesday morning was Bike to School Day.  Our kids have been in school for four years and this was the first time we were actually able to participate.  It was a lot of work for us parents, but it worked!  And Anna was able to participate in another "normal" school activity, albeit in a modified fashion.

First Kate's story, though.  Last fall Kate learned to ride a bike without training wheels, but she didn't have enough of a chance to practice it for the skill to really "stick".  This spring we have encouraged her to practice, without much luck.

Then on Sunday, Kate decided she wanted to be able to bike to school on Wednesday.  Monday after school we practiced a few times, but again without much luck.  Tuesday after school we tried again.  This time it clicked!

In the morning, Matt drove Kate in to town with both of their bikes on his bike rack and Kate was able to ride her bike to school AND do the bike course on the tennis courts.  Way to go, Kate!

Things to remember about Kate learning new skills ...

1) Give her a way to feel comfortable with making mistakes.  With biking, once she knew she could put her foot down and stop herself from falling, she was much better at taking risks.

2) Break down the big goal into smaller steps.  With biking, she did much better just practicing going up and down the driveway, instead of riding on the street at first.

3) She needs a specific, timed, external motivation.  Bike to School Day was on Wednesday morning; Kate learned to ride her bike on Tuesday evening.  We may have a natural procrastinator on our hands; we will work on this :)

Now Anna's story.  In Kindergarten, Anna wanted to bike to school, but Ethan was an infant and we just couldn't make it work.  In first grade, Anna was either hospitalized, or had just been discharged.  Biking was not an option.  In second grade during May, we were all just trying to survive until school was out for the summer :)

This year Anna's typical response for extra activities like this (and the dance a few weeks back) is "That'd be fun, but I don't have to do it."  Which for us means she has the interest and motivation, but doesn't want to make too much work for us.  Which means we should do it.

So we did it.  Anna rode her bike about 3/4 of a mile from the fire station to her school as part of the organized bike train.  She was cold; the first half was uphill and she needed my help; she was the last one by far who made it to school.

But she did it!  She saw some friends; their parents saw how Anna can participate in these kinds of activities; and she was very proud when we finally made it to school.

Wanna know what kind of extra work this means for us?  Probably not, but I want to document it so that I remember.

First, Ethan and I scouted out the route on Monday afternoon.  We parked at the fire station and Ethan rode his bike while I walked to school and back.  Looked good.

Wednesday morning, we loaded up Anna's tricycle, Anna's wheelchair, Ethan's bike, and helmets.  We drove to Anna's school to drop off her wheelchair before going to the fire station.  I walked with the kids while they biked to school.  Anna needed my help getting up the hill and making some of the turns onto the sidewalk.  Ethan was also needing lots of help, but it turns out that he was biking with a flat tire most of the way ... oops!

After we finally made it to school, Ethan and I headed back to the fire station and met Matt along the way so he could pump up Ethan's tire (which was flat again when we made it to the van).  Then we drove to Kate's school to pick up her bike; we had to put down Kate's back seat in the van in order to get people's bikes in, meaning the bikes needed to be at our house before I picked both girls up from school.  Finally, we drove to Anna's school to get the tricycle and bring both of the bikes home.

Whew!  But it was worth it.

Although this event required a lot of physical work on our part, I know of other families who had other challenges with the morning.

Sending a third grader who has anxiety would be more difficult.

Sending a third grader who just learned to ride a bike, but wasn't completely comfortable would be more difficult.

Not being able to send a third grader because of the extent or type of their special needs would be harder.

I'm glad we did it.  Anna is worth it.

Back to winter :(

This last week was cold and rainy.  It made for a long week after the fun of the previous 10 days or so.  Here's a few highlights (or low-lights?).

Anna came down with a nasty cold on Tuesday.  We figured she caught whatever it was that Kate had and since Kate managed swim week on top of a cold, we sent Anna to school each day figuring she could also power through.  But by Thursday afternoon when I picked her up for therapy, her cough was very persistent and the snot was getting to be a problem.  We kept Anna home on Friday and she was pretty miserable.  By Sunday she was well on her way to getting over the cold, but still not 100%.




Tuesday evening I attended an open forum at the hospital about camps specifically designed for kids and families affected by cancer.  I never knew there were so many options!  Of course, in all of the pictures and other literature, the kids are running, jumping, and playing.  So I guess not all of them are options for us right now.  However, we may keep the Brain Tumor Family Camp and a few others that are more handicap accessible in mind for future years.


Friday when I picked Kate up from school, she told me that her ear had started hurting during the day.  (Back story ... our kids typically don't get ear infections.  In fact, Kate is the only one to ever have had an ear infection; however, the double ear infection she had when she was almost 2 was a doozy.)  Kate perked up for a bit in the afternoon, but was complaining again after dinner, to the point of being in tears.  We called the on-call nurses who told us that we could just wait and see what the next day held.  I gave Kate the option of going in to Urgent Care on Friday night, or waiting until Saturday.  She chose Friday night.

Turns out she had an ear infection.  One eardrum was clear; the other was bright red, inflamed, and "bulging".  Who knows where this came from?  After her first dose of antibiotics and a good night's sleep, she was feeling back to normal.

Saturday was Matt's birthday.  Ack!  No pictures again!  The day was pretty cold and rainy so there wasn't much memorable for pictures anyway.  The kids were excited to give Matt their homemade cards and gifts, help him find his 38's (we are not really that old, are we?!) and we all enjoyed the tasty treats throughout the day.

Saturday afternoon Anna went to a movie to celebrate a friend's birthday.  We problem-solved how to transport Anna's wheelchair in our neighbor's vehicle with the birthday group and sent her on her way.  We even left Anna's pump at home and gave Anna the goal of finishing the water in her water bottle.  Turns out she drank about three times that goal, thanks to having movie popcorn to go along with it!  What good friends we have to then haul Anna to the bathroom multiple times :)

The weekend ended with a neighborhood potluck at a friend's house.  We were reminiscing that the first of these was when I was pregnant with Anna and the most recent was when I was pregnant with Ethan.  (I am at the stage of my life where I remember major events by who was a baby or with which child was I pregnant.)  The kids had fun; we had delicious food; and it was nice to reconnect with some neighbors we hadn't seen in awhile, as well as meet some new ones.

Now on to another week!