Life Outside the Hospital is AWESOME!

I have hesitated to post it...afraid to jinx us.  I know, silly.  But life has been chugging along so well that I don't want it to end.  But we are having so much fun- we just have to share it!  Here is a glimpse of our life in the last couple of months with Zoe feeling mostly well.  A few little colds, bladder infection, etc but no major illness.  It is AWESOME!

 I have to type it- "Our life is so bright, we gotta wear shades..."

 On the merry-go-round at Chuck E. Cheese

 Trying out the tractor at the pumpkin farm.  Ailsa picked a nice, small, easy to carry pumpkin.  Zoe picked out a monster pumpkin and when I told her it was too big for me to carry she told me to roll it to the car and up the ramp!  

 Hockey, hockey, hockey.  Every Saturday morning Ailsa's plays hockey.  And every Saturday morning, Zoe yells at us until we agree to take her.  Actually, even after we agree she keeps on yelling until we get her in the car, as if we are going to forget her!  The first Saturday, Zoe was cheering so loudly that Ailsa stopped skating and yelled, "Yes, I hear you Zoe!"  Zoe has been vocalising more and more.  She tells us she wants to use her mouth to talk like Ailsa.  Who knows, maybe some day she will.  For now, it is really great to hear Zoe using her voice.  She makes some pretty hilarious sounds.  And she is LOUD!

Zoe has been feeding herself more and more.  She has really learned how to manipulate objects with her small "contracted" hands.  She is great with food she can bring to her face and drop in to the palm of her hand while her lips grab it and she uses her fingers to push it in.  She is still learning what to do with sticky food like mashed potatoes, noodles, etc.  Shoving her hand in her mouth and licking it just does not seem to occur to Zoe.  It is fascinating to see her eating skills develop.  

Overall, we have seen Zoe develop these last few months.  It is amazing how a few months of not being seriously ill allows Zoe to flourish.  She has gained a bit of weight (1kg/ 2.2 pounds) and this has made a big difference in her strength.  She walked all the way to Tim Horton's (a favourite restaurant in our neighbourhood) several times.  It is about .5km/ .8 of a mile away!  Zoe has also gained some upper body strength and can sit up tall the entire half hour horse ride at therapy.  All that muscle gain has been great for her core muscle strengthening- Zoe is able to have really deep coughs now.  Why does this excite us?  Zoe is able to clear more junk from her lungs.  Between chest physio, suctioning and Zoe's deep coughs we have kept Zoe's lungs clear of pneumonia so far.  She has had junky lungs since late September (this will never change- it is just how Zoe's lungs are) but so far we have kept the junk moving so it is not sitting and growing bacteria.  This is AMAZING!  

Like I said, "Everything is awesome, everything is cool when you're part of a team.  Everything is awesome when you're living out a dream."

Ok, maybe we have watched the Lego movie one too many times...  I know a certain 8 year old who will be very excited that a certain movie with small unintelligible yellow creatures is being released to DVD soon.  We have never actually seen the Minion movie but Zoe has been talking about it for months!  And it will give us a break from "Frozen"!  So it better be good!

First Day of School and Other Fun Days

Zoe started 3rd grade this year!!!!  Ailsa started Kindergarten!

 Zoe and Ailsa- first day of school.  The girls picked their own colour coordinating outfits.  Zoe thought it was so funny to wake Ailsa up in the morning!  Normally we shushed her to let Ailsa get extra sleep.

Ailsa all ready to go to school.  I can't believe this was my baby!  Ailsa is doing great with the transition although she was a little confused why mommy was crying...

Another Great Day!

An amazing organization called "Million Dollar Smiles" (http://www.milliondollarsmiles.ca/home) gave us a wonderful gift.  Our respite work, Alison put in an application for Zoe to receive a play structure in the backyard.  Zoe qualified and on September 13th, 25 volunteers showed up to build it in our back yard.  Despite the rain, the team worked hard to get it built by the afternoon when Zoe and Ailsa would arrive home to see the surprise.  Rogers was our sponsor- they paid for the build, the play structure, all the food, a mini picnic table and even a special needs swing!  And many of the volunteers were Rogers' employees.  Thank you Rogers!  And thank you everyone from Million Dollar Smiles!

 Zoe was feeling great that day and everyone loved seeing her face light up when she saw the play set.  There were definitely a few tears among the volunteers when Zoe was laughing and smiling on the swing.  They could see how much Zoe was going to enjoy her new backyard.

Ailsa took a little longer to warm up to the large crowd of people in our backyard but she was super excited about her new playhouse with two floors!  Both girls insist on playing in there whenever possible.  I have even had to do chest physio and administer night meds in the playhouse when Zoe is refusing to come inside!  How can I say no?  Enjoy the warm days while we still have them.

Zoe has been having a great month and we have been enjoying the last of the nice weather.  We spend what time we can in the backyard on the play set or eating outside on the deck.  The last few weeks give me hope that Zoe will have a better winter this year.  It is so great to see her smiles and hear her giggles again.  She has even put on a little (very little) bit of weight and has progressed with some of her eating skills- she can now finger feed herself!!!  This gives Zoe a lot of pleasure- she loves being independent   We hope she stays well and continues to develop- we can see how proud she is of herself.  Zoe has even pooped on the potty a few times when she asked to.  Amazing!  Imagine where she could be if she had a good long healthy stretch!

Squeezing a Lot of Summer In To August

First stop- Easter Seals Family Camp

Easter Seals is an amazing charity.  One of the great things they do is run camps that are completely accessible (no saying you can't play here!)  Zoe was able to do the climbing wall, sledge hockey, high ropes, zip line, etc.  She was very tired but had a great time.  On the high ropes- she was so relaxed she actually fell asleep!  Mommy was not so relaxed- I needed a lot of encouragement to complete the zip line!  

Zoe and Gavin getting ready for the climbing wall.

 Gavin said Zoe was laughing the whole way up and down.  She kept sticking her hands out trying to touch the wall.  The entire time the blue hammock was swinging and you could see Zoe's little brown boots kicking back and forth.

 There was a big dance party the last night.  Both girls had a lot of fun the entire week.

Next stop- Wheelchair Rugby, aka Murderball

 Michelle (our amazing nurse/ respite worker/ friend) got us all tickets to the Parapan Am Wheelchair Rugby games.  The first game we got to see Brazil crushed Chile.  The second game was more evenly matched with Argentina vs I actually forget already.  We did not stay for the third game (Canada vs USA) because the girls were pretty tired by that time. 

 We met Michelle's partner, Jason for the first time.  As you can see- Zoe was really shy around him!

 We even got to try out wheelchair rugby.  Ailsa threw the ball right at Zoe's face which Zoe thought was hilarious!

Last stop (for now)- Camping with cousins in New York

We met up with my little brother Joe, his wife Kristen, their three beautiful children, my cousin Elena and her three wonderful children to go camping.  All the cousins had a great time playing together.  Zoe loved how loud everyone was!  And Aunt Kristen really loved Zoe's honesty when Zoe asked for a hug and Kristen said, "Oh, you want to give me a hug?" Zoe answered "No"!  It was Kate (the baby) that Zoe wanted to snuggle with.

We all decided hiking 1.5 miles down 800 plus steps and through narrow passages was a great thing to do with 8 children!  Everyone was happy to stop and get wet at this waterfall halfway through the 2.5 hour hike.  I love how Zoe is practically jumping out of the backpack in this picture.  Joe and Elena kept complaining about carrying their youngest children but they never did take us up on our offer for them to switch and carry Zoe instead.  I wonder why...

So far August has been great and we are not done yet!

You Can't Say You Can't Play

In University I read a book called, "You Can't Say You Can't Play."  It was about a teacher who tells the children they can not exclude other children from their play.  The teacher has several conversations with children of different ages about what fair really means and the impact of being told you can not play.  They explored how being told you can't play affected their self esteem, self concept, hurt their feelings, caused humiliation, etc.  Not surprising, when a child is told they can not play it hurts....a lot.

Fast forward many years to this past Sunday at IKEA.  Finally, Zoe and Ailsa are both tall enough to fit the IKEA criteria for playing in the ball pit.  Both girls are excited and ready to go, but wait- first the girl working the counter says Zoe needs to be measured, she is hoping Zoe is too short to come in.  But alas, no the child is tall enough but...a-ha- here is a way to get out of this- the child can not walk on her own!  Yeah, brilliant!  Thank god there is an obvious reason for not allowing this child to play.  This way the girl can discriminate without stating the obvious "we don't want children with disabilities playing in here. She can't play in here because she is different."

Ailsa goes in to play after crying about not being able to play with Zoe.  We encourage her to have fun anyway.  Zoe looks sad and signs, "Ailsa" repeatedly while we try to explain how this is ok when it is not ok.  Not ok at all.  They won't even let Zoe roll around in the ball pit while we watch.

"It's a safety concern, we have to be fair to all the children" meaning all "normal" children.  "What if the other children started jumping on your daughter?  We could not intervene."

Seriously?

That is the best you can come up with?  So if Ailsa slips, hits her head and then falls to the floor and the other children start to jump on her, your four staff who are huddled in the corner chatting will just stand by and watch?

"During an evacuation staff are not allowed to carry children out."  Clearly they are incapable of picking up one child in the event of this impending crisis/ evacuation that is imminent.  Even though we would be standing RIGHT THERE it would still not be safe.  God help the child who is not listening and gets left behind in the burning building because IKEA staff ARE NOT allowed to pick up children.

"Would it be fair for your other daughter to have to look after her sister like that?"  Meaning what?  If a bunch of children jump Zoe we have the unfair high expectations as parents that Ailsa would alert adults to intervene???  Or are they suggesting we think Ailsa will carry Zoe out during the evacuation that is NOT HAPPENING!  AND DID I MENTION WE ARE STANDING RIGHT THERE.

So, here we are- 2015 and they say Zoe can't play.

And I am pissed.

And Sad.

And so fucking angry.

But I have to suck that back.  Help you focus on something else.  And let your sister have fun in the play space carved out for people like her- people who can walk.

The sign on the wall says, "Smaland means small land.  A land for small, but very important people.  Children.  Your children."

But I guess that does not mean all your children, certainly not those with physical disabilities because really is it fair to ruin it for all those other children just trying to have fun?  Apparently Zoe playing at the same time somehow will ruin it for everyone else.  Not sure why that is...

This is not a fight I have energy for...today.  But some day, they will get my angry letter and some day the world will change because of people like me advocating for people who can not advocate for themselves.

Some day other moms hearts will not need to break.

Some day a chid who can't walk will be told 'yes' instead of 'no'.

And some day I will not have to look in my children's eyes as they look to me to explain a rule that is blatantly unfair- even a 4 year old can see this.

All of these hopes for some day.

One small hope for today- that the staff we spoke with (make no mistake- we spoke to not just one but two different managers!) will stop for a minute, just one minute, and think about this.  Because really, is this the way IKEA wants to be seen?

Shame on you IKEA.

Two Great Days

Sisters Forever

Ailsa and Zoe on Ailsa's Recital Day

I may have mentioned before, once or twice or a hundred times, that my girls have a special bond.  Ailsa was so excited that Zoe got out hospital last Saturday- the day before Ailsa's recital.  All week Ailsa was worried Zoe would not be able to make it.  We planned on asking for a day pass...or just taking Zoe out of hospital against orders if it came to that!  But it turned out Zoe was at home and we could all enjoy the day to celebrate Ailsa.  Ailsa kept saying, "This is my special day!"  

Grandad, Alison and Lyn joined us for the recital.  Zoe loved all the music, lights and dancing.  Mid-way through we had to stop to give her a morphine dose but as soon as the pain subsided, Zoe kept on dancing!  After the show, we went out to Boston Pizza (Ailsa's choice) for a special lunch/ early dinner.  Ailsa wore her costume the entire time (as well as the following three days to school!)  It was great to have that day as a family.  It was an awesome day!

Speaking of Another Awesome Day from May

When asked where Ailsa wanted to have her birthday party, she looked at me and said, "With Zoe of course!"  So we had a full on party in Zoe's hospital room!  Zoe was not allowed to leave her room but that didn't mean we couldn't throw a party!

 Zoe and Ailsa's clown friend, Ranger stopped by to sing and play.  Ailsa thought "clown thumb" was hilarious.

 Zoe found it hilarious to pull her nose off and laugh at Ailsa.

 Bubbles- always a favourite!

 Someone was excited to give Ailsa her gift...

 ...and someone was SUPER excited that Alison got Ailsa the critters playhouse!

 Ailsa got a big girl bike for her birthday and rode it for the first time in the hospital hallway.  If you look very closely, you can see Zoe signing, "Ailsa" while we cheer her on.

 Ailsa soon mastered the bike and rode it all around the hospital.  We stayed at a local hotel for two nights so Ailsa could be close to Zoe and we could all spend some time as a family.  Family time can be difficult to find sometimes.  Ailsa loved sleeping at the hotel the first night with mommy and the second night with daddy.  And of course swimming in the pool was lots of fun!

Our New Address

Too Much Time In Hospital

We've spent so much time in hospital lately that I feel like we should start listing this as our address!  Zoe has spent more time in hospital than home.  She was so excited to get discharged two weeks ago after a month stay.  She was ecstatic about returning to school.  She got to go to school all last week and two days this week, so I guess that is something.  But here we are, back in hospital with yet another bladder infection.

As I mentioned in my last post, Zoe's infections are a bit more complicated now so we are waiting to see if we can switch from IV antibiotics to oral.  We were hoping to head home today but that is not looking hopeful at this point.

As always, Zoe does amazing with all of this.  She makes the best of the moment.  But she is starting to get a bit frustrated.  She keeps saying she is sad and mad and wants to go to school.  It is a good sign she is feeling better but it breaks my heart that she has such a simple wish that I can not grant.  Zoe has been communicating more with her iPad with the hospital staff directly which has been great.  She can talk to them about her wishes for her treatment.  Zoe has been advocating herself for more pain medication so we know her pain has been pretty bad lately.  Staff have been very patient talking with her as she takes time to find what she wants to say.

Sister Bond And Invisible Strings

Zoe and Ailsa remain very close.  All of these hospital stays has really affected Ailsa.  She worries about Zoe.  She has had a lot of questions about death and dying lately, trying to figure out the difference between Zoe being dead and Zoe being in the ICU on a breathing machine.  Gavin and I let Ailsa talk about whatever she needs to and we answer her questions as simply and honestly as we can.  Even when she brings up topics we rather not talk about.

When we were headed to hospital earlier this week, Ailsa ran up to Zoe and gave her a gentle kiss and hug while saying, "Hug.  Strings attached" while pretending to link a string to Zoe's heart.  The palliative team gave us a book about how the people we love are attached to us with invisible strings so even when they are far away, we are still attached.  This concept has brought a lot of comfort to Ailsa.

As Gavin, Zoe and Grandad pulled away headed to hospital and Ailsa turned to me and said, "Let's read a book about dead things" I sucked back my tears, gave her a big hug and carried her inside.

Seven Weeks, Let's Try for Longer

Busy Winter

This winter has been a hard one on Zoe.  She has been in and out of hospital since August.  In March we finally got a break.  Zoe had her longest stretch out of hospital since last summer- seven whole weeks!  Seven weeks actually felt like a long time since we had gotten used to a new crisis every other week.  We really enjoyed some good family time.

March was Daddy's birthday!!!

 Big girls made the cake!

 Of course, making the cake involves a lot of taste testing...

 and beater licking!

 Zoe, who never had much of a sweet tooth, is actually enjoying sweets now.  She usually eats a few bites of cake and even enjoys a little ice cream these days.  

March Break Trip

For March break we went to Niagara Falls with our friend Angela and her family.  They have two girls- one just a little younger than Ailsa.  The kids had a great time playing and of course the hotel had an awesome pool.  The pool was part of an old outdoor courtyard they had put a sunroof on.  So even though it was cold outside, we got to go swimming among trees, plants and sunshine.

 We were having so much fun that we did not take many pictures but here is a great one of Ailsa showing off in the pool.  This was the first time Ailsa was willing to float/swim on her own.  Normally, Ailsa clings to Gavin or me.  It is great to see her feeling more comfortable in the water.  As you know, Zoe LOVES water so I can see lots of time spent swimming in the near future.  

Worrisome Infections

Zoe has started getting infections that are harder to treat with oral antibiotics.  This is not surprising given Zoe's immune system, how much she has been on antibiotics in the past, and Zoe's allergies to certain meds.  She had some serious infections this winter that needed longer IV antibiotic treatment.  We have been attempting to have Zoe at home when on IV antibiotics but it has been challenging.  Zoe's PORT seems to get clogged very quickly these days.  When she is in hospital, this is not a problem because they keep a constant flow of saline going in to her veins.  At home Zoe gets her antibiotic once every 24 hours.  This works well as long as the PORT is flushing easily.  We have ended up in the emergency room a couple of times with PORT issues.  Sometimes they have to give Zoe the clot buster medication to get the PORT moving again.

Every once in a while Gavin and I have to take a step back and look at the big picture with Zoe.  Sometimes we feel like we are backed in to a corner when it comes to Zoe's health and we are left doing things we really rather not do.  When Zoe is home (like now) on IV antibiotics, we end up doing most of her IV care.  Before this year, we did not run Zoe's IV meds.  Now, if we want Zoe at home, we have to run her meds because things happen like- Saturday night Gavin and Zoe were in the emergency department getting the PORT to work, her med was given at 1am which means the next night the dose has to be given around that time and the home nursing agency says they can not send a nurse in middle of the night (which sounds like a bunch of bullshit to me but no sense going off on that one).  So it falls on us.  Which is fine in the sense we are more than willing to do whatever it takes for Zoe.  But it is kind of scary.  We are sleep deprived parents who are not nurses.  Ailsa had some sort of gastro thing all weekend and was up puking.  So here we are, trying to run IV meds for Zoe while taking care of Ailsa and monitoring Zoe since she just got out of hospital.  Zoe's PORT is not flushing well but we are told to just push it a bit.  Where do we draw the line?  What does that even mean?  

As always, we take things one day at a time.  Right now, we are still able to handle things.  Zoe's care is becoming more complex with time.  Which means we either have to take on more medical interventions ourselves or advocate for more nursing.  Or have Zoe spend even more time in hospital.  Or see if Zoe could spend some of that time at a respite place that could run the meds.  

All we really want to do it just take our kid home and leave all the medical sh$% behind.  We have been lucky to have some good nurses but it is difficult having people in our house all the time.  We just want to spend time as a family doing normal, exhausting family things- like bike riding to Tim's for lunch (which is exactly what we did today).  It took 3 1/2 hours with prep time, but hey- we did it!  The bike ride itself was only about 10 mins, but we had fun.  

That is all we can do.  

Keep finding little ways to have fun.

Happy Birthday, Ailsa!

Ailsa turns 4 this Friday!  Wow, time really does fly by.  Ailsa is definitely growing up with a different perspective on life.  When Ailsa spilt some water the other day she said, "No worries.  We don't worry about water spilling, we have other more important things to worry about."  Ailsa does worry about Zoe but so far she is able to talk about what is on her mind.  It is amazing how much Ailsa picks up on and understands.  I know, I know here I go again talking about how amazing my kids are, but seriously- Ailsa really amazes me.  And while I love seeing what an empathetic and mature child Ailsa is, I love seeing her just kick back and be a kid.  Because that is what life should be about for her.  While Zoe has been in hospital, Ailsa and I have been eating dinner on the back deck and spending time swinging and going in the hammock.  Here is one of my favourite pictures of Ailsa in the hammock from the other day.  We are loving the warm weather!