My little Ice Raider

My little Ice Raider.  Number 8 on the blue team, sponsored by (who else) Tim Horton's.  This is Canada, after all :  )   Her daddy's first hockey team from . . . oh my goodness - 36 years ago was also sponsored by Tim Horton's.  Love those donuts!  

FYI- she ended up being number 8 because she was the eight kid on the blue team to pick up her sweater. Go Ailsa!  Go number 8!  Go Ice Raiders!  

Ailsa is getting better all the time.  She can skate without the support bar now, but is a still learning  so she uses the bar at practice.  The practice mainly consists of the kids skating up and down the rink, sometimes doing drills, sometimes just trying not to fall down.  The kids are all very cute- the tiny little bodies with big heads, falling down all over the place.  Gotta love it.  It's easy to pick out Ailsa as she is the only one with a pink helmet.  And pink hockey tape on her stick.   

Every Saturday, 9:15 AM.  If you are ever in town swing by to cheer her on!  

(this post was done by Gavin, just FYI- I hijacked Gen's account name!  ) 

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!  

Seeing the World Through Different Lenses

Positive Lens

Some days are easier than others to sit back and appreciate the little things.  I love looking at the world through Zoe and Ailsa's eyes.  I especially love to see Zoe from Ailsa's perspective.  She thinks her sister can do anything.  She sees Zoe as strong and protective.  She has said before, "If Zoe is with me I can be brave enough because she will protect me."  Both girls were so excited when Zoe came home last Friday.  They spent the whole weekend laughing, smiling and playing.  We even had a chance (first time this winter) to go tobogganing!  Ailsa can sometimes get a bit scared with too much action so we weren't sure how she would take the bigger hills but with Zoe by her side, she loved it!  Our toboggan is big enough that Zoe can lie down with Ailsa in front or back of her.  And if we want, an adult can even squeeze in if they help Zoe sit up.  We had a great time watching the girls toboggan together as well as trying it out for ourselves.  We even let Grandad have a turn since he did most of the work hauling Zoe back up that big hill!

Negative Lens

Some days it is not as easy to put on the positive front for others.  And hearing about someone's pain or anger or frustration can be difficult.  For the most part, Gavin and I really are positive people who see life from mostly a positive lens.  But we do think it is important to talk about the negative stuff too.  Our hope is that someone out there will read our blog and say, "I am not alone."

Dealing with the day to day grind of taking care of someone with severe disabilities takes its toll and that honest expression of the frustration with the little things is quite therapeutic.  For us, the writers.  And hopefully not too painful for you, the reader.  Fortunately we have a great sense of humour and can laugh at ourselves, so at the very least, we are entertaining.  At least we find ourselves entertaining...  Sometimes humour is the only thing that keeps us going.  Even if it is dark humour...sometimes that is what it takes.

Unconditional Love

No matter the type of day/lens we are looking through there are a few things that never change or get distorted by our emotions.  Gavin and I are amazingly lucky to have two beautiful, wonderful, amazing, funny girls.  We did not believe we would have biological children together due to Gavin's cancer history.  So when we found out we were pregnant with Zoe- we were over the moon.  And having her born without any warning that something was different never changed that feeling for us.  When people ask when we felt attached to Zoe (I know some parents struggle with this), I always honestly respond- that first pregnancy test that was positive we were hooked immediately.  I am a mother and I believe a mother's love should always be unconditional.  It does not matter how many genes Zoe has or does not have or any of this other crap, I love her just as she is.  And lucky for us, she just happens to be amazing!  If you are a parent who does not feel this, don't feel guilty.  Just spend some time with your child and you'll get there.

Other People's Lenses

You know that really annoying lady who is always showing off pictures of her children and telling you stories about them and you are thinking, "Enough already!"  I could not understand these people. Until, I had Zoe.  And I KNEW with absolute certainty that she is so wonderful and amazing that EVERYONE wants to look at pictures of her and hear stories about her.  This is not just the way I see things, this is a FACT.

In the beginning I thought if I explained Zoe's differences it would make her accomplishments mean more for people who do not really know Zoe.  I found myself "showing off" Zoe's various abilities.  "See look- she can sign, she can walk, she can feed herself Cheetoes.  Don't you see- she is AMAZING!"  And like those other annoying moms, I am sure some people were like, "Yeah, yeah, we get it, you like your kid."

What I didn't realise for some time is that there are people who make up a picture in their head of what Zoe can or can't do.  What she feels or doesn't feel.  And I thought, "They just misunderstand, if I just explain it right, they will get it."  And then I began to realise, that some people just do not want to question themselves.  Why they are so uncomfortable around people with disabilities?  Why do they make these judgements and refuse to amend them even when given evidence?  I don't know why some people think that different people in this world have different levels of worth.  One life is more precious than another instead of all life being precious.  Even some of Zoe's own family do not see her as equally valuable as a "typical" child.  This is mind boggling!  The only way I can really wrap my head around this is to assume it comes from a place of fear that people just don't want to go there.

Lucky for us- Zoe has so many supportive and amazing people in her life.  We can not imagine how we would make it through without all of you- so Thank You!  And you KNOW how amazing Zoe is because you read this blog!  And you never, ever, ever skim through when I am going on and on and on...  

Time for Us

I mentioned in the last post a trip Gavin and I had planned and hoped to take.  Gavin and I were able (with the help of several people!) to coordinate support so we could go away on our planned anniversary trip.  We asked Zoe if she would like to go to Emily's House for respite after her discharge from hospital last Monday or if she would prefer to go home.  Zoe immediately picked Emily's House.  Once we reassured her that the school bus would pick her up every day, Zoe was so excited she could not wait for us to leave!

Ailsa did really well too.  We had some special people come in to spoil her a bit and she had a fun week.  I think she missed Zoe more than she missed us!

Happy Birthday Zoe!!!!

Can you believe it, Zoe is 8 years old!!!  The day was a memorable one for a few reasons...

 We had a big dumping of snow the night before.  Ailsa had fun "helping" daddy clear the car off so we could go visit Zoe.  Zoe was...

 in the hospital.  Unfortunately Zoe had a rough past couple of months with multiple hospital visits and 9 different courses of antibiotics!  We were managing her most recent illness at home until she started vomiting and having an increase in seizures.  So off to the hospital we went, on a Holiday Monday.  Of course it had to be a Holiday!  Luckily emergency was pretty quiet and since Zoe was very sick, we saw a doctor within minutes and we were transferred up to the inpatient floor within a couple of hours.  Turns out Zoe had bacteria in her blood.  Which is a first for us and pretty scary since it can be really serious.  Six days in to this hospital stay, Zoe had her birthday and so we celebrated in her room.  This was one of the few smiles I saw that day because Zoe was still having a lot of pain, very tired and still was not allowed to eat at this point.  She loved having everyone sing Happy Birthday to her.

 A few close people were able to stop by for the party.  Not pictured here- Alison and Lyn who also came.  Alison actually spent the night before with Zoe so Gavin and I could go home together for a night and have time Saturday morning to get all the birthday stuff ready.  When we came in Saturday morning, Alison looking tired said, "I don't know how you guys do this."  Thankfully, someone had gotten her a coffee and we immediately gave her a well deserved break!

Ailsa was so proud of Zoe, she told everyone, "It's Zoe's birthday!"  She misses Zoe but she did get to spend some time with her over the weekend and Monday after she went to her own appointment at the hospital.  Zoe will need IV antibiotics for another week, so we are trying to figure out if she needs to stay in hospital or if she could transfer to a respite centre that has nurses and is closer to home.  Gavin and I have a trip planned for next week- we are going away for 5 nights to celebrate our 10th wedding anniversary!  The funny thing is that our anniversary is in November but Zoe has been in hospital the past six years in November and it is usually a bad month for her.  So we thought we would book March since she is usually good in March... ah well.  The best laid plans!  We are trying to see if between respite and Grandad we could still go.  If we don't go next week it won't happen any time soon.  The place we are going to had a great discount price for early March so the next discount period would be November....and I don't think we would take that chance.  We'll see.

Zoe is feeling so much better today.  We see more of the giggly, silly girl we know so well.  For a few months now, Zoe had not been her self.  It is a huge relief to see that smile again.  We missed Zoe!  Zoe is back to bossing us around and acting crazy- we love it!

Content warning-  okay, so I'm not a fan off undue profanity, so I'll try to keep it to a minimum.  But sometimes it just feels so f****** good.  

So I've been struggling to get Zoe on the bus recently on time (7:50) and it seems like no matter when I get up (usually around 6:00) there's always that last minute diaper to change (even if I've already changed her once. Or twice. Or . . . ) or there's a problem with her feed or whatever.  And our bus driver this year, who seems like a nice enough guy but not on the standard of previous years' drivers) has been a bit shitty about it.  I mean, if you would like to help out maybe, like, lend a hand and help me get her chair  through the fucking snow banks when you see I'm struggling, or grab my damn snow shovel that's lying right there and help clear a path because I haven't managed to get to it in the last four days because I have been too busy to sit down, never mind swing a snow shovel.  And I was late again today, after almost two hour of continuous care and while he didn't say anything (or do anything to help) I just want to say to him "look, I'm doing my fucking best and if you can't see that have your fucking supervisor call me and I'll explain to him that the reason I am late is that I have been up since 6:00 and I've already changed her butt three times, and drawn up her g-tube meds and given her those meds and apply her transdermal med and rubbed that in and given her her oral meds and brushed her teeth and find her formula and measure the formula and heat the formula and run the formula and then put her feed supplies in her bag (shit- forgot to put extra clothes!), and put her pump in her bag (damn, forgot to put in the cord- the battery is a little low), and check and flushed her g-tube, and clean my three years butt (she pooped in the potty- YEA!), and  got her some toys and given her hugs and pack Zoe's lunch, and put the lunch with the chair and find Zoe's glasses and clean Zoe's glasses andnmfind her glasses strap and put that on her glasses and find a glasses case and put that in her bag and write a note to Zoe's teacher about her chronic diarrhoea, and write her school nurse a letter about her chronic diarrhoea and put her communication  book in her bag, and put her iPod in her bag, and the key guards in her bag,  and get Zoe to pick an item for show and share and write a note about that item to her teachers and get Zoe dressed, and then dressed again, and then again, and put all the poopy diapers in the conmpsost container, except the two cloth ones which go in the laundry, and wash my hands for the sixth time, and put on hand lotion, as my fingers are so dry and sore from washing them the whole time, then get her wheelchair ready, and put it outside and get her dressed, and change her butt for the last time, and put her in her chair and strap her in and bump her down the stairs (no lift yet- that's the project for the spring!), and get stuck in a snow bank as the driver watches and struggle on through to  wheel her onto the bus lift and maybe, just maybe I might remember to give Zoe a kiss and tell her I love her (I don't even remember if I did this today, or just loaded her up like cattle) and deal with that feeling of parental guilt and then come inside and reflect upon the things I've forgotten (her cord, clothes, her extra walking boots) and what a shitty ass parent I am and then, just then your supervisors head swill explode and he'll say,  "holy crap, how do you ever manage to even leave the house?" and he'll get around to figuring out how to fix the crappy ass system that means that simply because we live furthest from the school and closer to the bus depot  that Zoe  has to, has to, has to (there is no other possible way- it's simply a law of physics) get picked up first and spend an hour on the bus and not have the extra 25 minutes for her stupid, lazy disorganised dumb ass father to get her out the fucking door on time.  

Now I have to get my other daughter to school- maybe she'll get there by lunch.  

Happy New Year!

First some cute pictures...

 We went to the Science Centre on December 31st to celebrate the New Year.  Both girls love the water table.

I love the water flying around in this picture.  For some reason, both my children (and Gavin's legs- he is holding Zoe in the upsee) got totally soaked!

... and then an update.

Zoe's Discharge, IV antibiotics and Port Problems

Turned out Zoe had RSV (a respiratory virus) as well as a bladder infection.  And of course, the bladder infection was a funky bacteria that is not as common in urine.  AND Zoe is allergic to the only oral antibiotic that could treat it.  Despite past reactions to this medication, we went ahead with pre-medicating Zoe with anti-histamines and tried a dose of the medication in hospital.  Zoe had a reaction- very itchy, irritable and her chest sounded tighter to the doctor.  Now we know she is definitely allergic to that one.  Which knocks out another class of antibiotics and makes Zoe all the more tricky to treat.  In regards to this bladder infection, it means it had to be treated with IV medication.

We went home on Wednesday with plans to continue the IV medication at home through Zoe's port.  All went well on Thursday and Friday.  On Saturday, the nurse was not able to get blood out of the port which meant she could not run the antibiotic.  We tried moving the needle a bit and I even reinserted a brand new needle.  None of these usual tricks worked so we packed Zoe up to head to the hospital.  Besides needing her antibiotic, having an issue like this with the port meant Zoe needed to be seen.

7 1/2 hours later, we finally left the emergency room.  We still could not get the port to work and an X-ray shows that the port might actually be broken or out of place.  They were able to get an IV in Zoe's hand so we were able to get her medication in to her.  We were given the option of waiting around in hospital until the specialist can do something about the port which probably would not be until Monday at the earliest or going home.  We opted to go home.

So What Does It Mean?

The problem with the port not working means one of two things is going on:

1- the port is truly broken and needs to be replaced.  This means Zoe would have to have surgery to remove the old port and insert a new port.  It also means that in the mean time, we do not have good access for Zoe if she gets sick.  Which means we would not be able to give her the drugs that she would need in order to stay alive.  So obviously, getting the port working is a priority.

2- there is a blood clot (or clots) either in the port or in the line somewhere.  This is not a good thing. The blood clot could break off at any time and go to her heart, brain or lungs.  None of that is good.  Last time we had issues with the port, they gave Zoe a clot busting medication and that worked.  So we would have to return to the hospital for this medication.  The medication has some possible side effects (some of them serious) but the risk of the medication would be less than the risk of a blood clot travelling around Zoe's blood stream.

We will hear from the team (hopefully Monday) about what they think is happening and the plan.

We Are All Tired, Tired, Tired

Several people in the emergency room asked us how we are doing.  They have seen us a lot lately and are always very supportive.  Gavin worked in the emergency room before he got the second meningitis.  So he knows a lot of people there.  Some of these people have been there to literally save our daughter's life.  So they have a glimmer of knowing what we go through.

Our response is "We are tired."

We are tired of being in hospital.
We are tired of seeing our child go through this.
We are tired of seeing our child in pain.
We are tired of making decisions.
We are tired of not sleeping.
We are tired of all of this.

But other than that, we are good.

We are good because:

Zoe is doing ok.
Zoe is safe.
Zoe is home.

For the moment.

Genevieve's Health

I have been struggling with my own health issues.  I have been taking hormones to treat my endometriosis and despite doing everything I can (I have been dieting and exercising for the last eight months. I lost 29 pounds, 29 inches- oestrogen is stored in fat cells so this should help lower my hormone levels) I was bleeding again this month (sorry, brothers- not what you want to hear about).

I used to treat my disease naturally- with exercise, good diet, acupuncture and rest.

4 years ago that all changed.

4 years ago Zoe almost died for the first time.

4 years ago we realised what the team had been saying all along about Zoe's medical fragility just might be true.

3 years ago life turned upside down and then upside down again-

Gavin had his reoccurring tumour in his spinal cord followed by two bouts of bacterial meningitis.

2 years ago I realised i could not do all of this and keep going.

And so, I started on medications to treat my endometriosis and to help bolster my mood and improve my sleep.

Because living like this makes it nearly impossible to take care of myself and do what I need to do in order to get better.

I started back at work.  Lasted two months.  Then Zoe got sick and almost died...again.

And so, here I am again in middle of a hormonal, physical, emotional crisis.

Just making it through the day.

One day at a time.

Two Quotes from the Day

After spending the last two nights at the hospital with Zoe, I came home today to spend some time with Ailsa.  We had a great time hanging out, taking a bath, playing, etc.  My two favourite quotes from today are:

I had bought an ice cream cake for Ailsa and me.  Ailsa kept thinking it must be someones birthday but I explained I got it just because I knew she would like it.  She asked if there was enough cake for daddy and Zoe and I assured her that if we ate all the cake, we could always get more when Zoe gets home or even make her a cake.  While talking on Face Time with Zoe, Ailsa said to her, "Zoe, we are going to make you a cake." Then she put her finger to her lips and made a shushing noise while saying, "But it's a secret!"

Ailsa and I were playing with her new magnetic mermaid and ballerina dolls/ figures just before bed.  I suggested we get the mermaid and the ballerina ready for bed.  Ailsa was in charge of dressing the mermaid who had all sorts pretty and form fitting outfits.  She said, "Oh, good idea mom.  Let's pick out some compy (Ailsa still says a p sound instead of an f so comfy sounds like, comp-py) cozy clothes for them."  After searching through the clothes, Ailsa said, "I don't think this mermaid has any compy clothes, they are all kind of tight.  Why wouldn't they give her any compy cozy clothes?"

You Have to Just Laugh

Ailsa and I spent most of Boxing Day (for the non-Canadians that is the day after Christmass) in the emergency room because despite being on antibiotics for 5 days for a double ear infection, she was still spiking fevers close to 40C (for the non-Canadians, that is really high).  We could not find a good walk in clinic open on the holiday so off we go.  It was an insane day in emerg and in the end it was what we suspected- some sort of viral illness that has to run its course.  The doctor was concerned enough that he did a chest X-ray but thankfully, no pneumonia.

Fast forward three days and guess who starts getting sick.  Actually I was also sick and lost my voice but hey, who cares about me right?  Let's face it, for the three people who actually follow this blog, you do it to see cute pictures of the kids!

Fast forward six days and we end up in the emergency room with Zoe.  Turns out she has RSV as well as another bladder infection.  So this is where the laughing part comes in: a few of the emerg staff are the same people who worked Boxing Day, and the ones who had said, "I am so glad it is not Zoe who is sick" now said, "Damn."  And while the emerg was crazy on Boxing Day and we waited 7 1/2 hours to see a doctor, Zoe is seen within minutes.

Ailsa gets so concerned about Zoe that she becomes rigid in her routines, cries if I am out of her site and clings to me (even while I am on the toilet).  My heart breaks.  We saw a doctor for Ailsa just to confirm we are doing all we can to support her.  And yes, we are.  In fact, the doctor is very impressed with Ailsa. No surprise there, we already knew she is amazing.

And so, the laughter has to kick in.  When Gavin and I notice some swelling in Zoe's face indicating third spacing and her oxygen levels dip, we say, "oh well, if Zoe gets really sick and goes to the ICU at least we can use the nice family room and get free breakfast.  And as Ailsa cries, "mommy, where are you going" as I travel the five steps it takes to go to the bathroom in Zoe's room and proceeds to follow me in and hang from my neck, I find myself getting irritated.  (Which is an easier emotion than feeling incredibly sad).

And so, I chose laughter.  Because there is nothing else I can control right now.  So if you see a crazy woman in PJs wondering the hospital halls, hoping to get a cup of coffee before her daughter launches herself out of bed, laughing to herself- have no fear, it is just me.  Living in the moment.  Cherishing a hot cup of coffee.  Now if only I could get to drink it while it is still hot...now that's the tits.

"Everything can be taken from a man except one thing- the last of human freedoms: the ability to chose one's attitude in any given set of circumstances."  Viktor Frankl