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

The Year in Review

Here we are, at the end of another year.  It's cliche to say, but very true- I can't believe it is the end of another year.  And like many other years, this one seemed to fly by.  I try to pause in my every day life and appreciate the little moments.  We started keeping a daily diary for ourselves and the girls to make note of the small things that happen in our day to day lives.  While this is a wonderful concept, there are many dates we did not fill in this year.  It is difficult at the end of an exhausting day to pause and appreciate all that you have.  And so, once in a while I try for a big pause and a big appreciation of all that we have.

Because what we have in this life is wonderful.

And amazing.

Who am I to be so lucky in this life?

Kidney Disease

This year started off with Gavin and I absorbing the news of a terrible diagnosis for Ailsa.  How can it be that our healthy child has been saddled with kidney disease?  What will happen?  How bad will this get?  Will Ailsa need a transplant?

We still don't know the answers to many of our questions.  And our hearts still break when we give Ailsa her kidney medication every day.  But still, we know we are lucky.

We are lucky because Ailsa is an amazing person who is part of our lives.  She is a gift.  And this gift does not come with a warranty.  Which we, as parents, always want for our children.  We want to know that our children will always be happy, fulfilled, successful, and of course, alive.  But life makes no such guarantees.  And so we can only appreciate this moment.  And appreciate that we have been given such a wonderful gift.

Who am I to be so lucky to have two beautiful daughters?

A Trip of A Lifetime

It is always easier to feel grateful during happy times.  In March this year, we got to go on a Make A Wish trip and it was amazing.  Everything about the trip worked out well, including the fact that no one was sick.  We all had such a great time, just enjoying life as a family.  We still enjoy looking at the photos from that trip.  I love seeing the smiles on the girls faces.  And seeing how relaxed we all are.

Who am I to have such an amazing trip with my family?

G-tube Decision

This year Gavin and I had to make a difficult decision.  Zoe has always grown well (for a 1p36 child) while eating orally.  In the past two years, Zoe has gained some length but had not put on any weight.  This became concerning when Zoe started to tire easily and her body began burning its muscle since the fat stores were gone.  Do you know what it is like to watch your child struggle to thrive?

We decided to get a g-tube so that Zoe could continue to enjoy eating orally but have some extra calories via tube.  Zoe has done well on the g-tube.  She continues to eat orally, in fact she is eating more now because she has more energy and is doing more.  We know we made the right decision, which gives us great comfort when dealing with the annoying aspects of the g-tube.  Zoe has had several g-tube infections and right now we are applying silver nitrate to burn away some of the scar tissue.  This is not an easy thing for a parent to do- when Zoe cries in pain, I am tempted to stop.  But we know this is what needs done.  In many ways we hate that Zoe needs a g-tube and we definitely hate the pain that it has caused her.  But we know this is what Zoe needs.

Who am I to question the path Zoe needs to take in this life?

Every Day is a Gift

Zoe was once again critically ill this October.  We again had one of those moments where we had to talk with the team about how far we wanted them to go in order to save Zoe's life.  We again made the decision that Zoe's life is a life worth living and we want them to do everything they can to save our daughter.  We again had an agonising few days where we could not be sure where the bottom was and how far down Zoe would go.  And then...

Bounce.

Zoe bounced back.  Like she always does.  Like we hope she always will.

We are left feeling scared, helpless and sad.  These things come up so quickly and there is nothing we can do to stop it all from happening.  That thin veil of denial between thinking your child will live forever and knowing that all people in this life die becomes so thin that you see the other side for a moment.  And it paralyses you.  You can not imagine how truly horrible it is to lose someone so close to your heart until it happens.  And we are lucky enough that it has not happened to us.  But these moments, when Zoe's body is shutting down and we stand aside, helplessly, we get a glimpse of that loss.  And it is terrifying.

Still Zoe is struggling.  Another bout of pneumonia and she is still not herself.  She tires easily, is in pain most days, she struggles.  And our hearts break because we want to fix it all.  And we can not.

And yet, here we are.  At the end of another year.  We are all here together.  And so I am insanely grateful.  To have this wonderful family.

Who am I to be so lucky?

Christmas, Already?

Our December weekends are filled with various holiday activities, so we decided to get our tree early- the last weekend in November.  It worked out great- the weather was milder and we have enjoyed decorating the tree slowly.  Last year we ended up having to decorate our plant at last minute because we did not have time to get a tree.  So this year we made sure we would not miss out.  Zoe was very determined to pick the tree that she wanted.  Zoe was in the upsee and kept walking back to a particular tree.  Which was fine, except it was too small to cut down.  Any time I tried to walk away from the tree, Zoe would lock her knees until I let her walk back to it.  At one point, she kept walking over to the tree and then over to the saw as if to say, "Come on or I will cut it down myself!"

After cutting the tree down and riding the wagon back to the old cabin, we warmed ourselves by the wood burning stove and enjoyed hot chocolate with marshmallows.  Even Zoe loved sipping the hot chocolate.  Considering Zoe was at the doctor's the day before and diagnosed with pneumonia and Ailsa ended up at the doctor's the day after with an ear infection, the girls were in a great mood and we all had a good time.  And since we have our van now, Grandad was able to ride with us and not have to take his own car AND the tree fit in the trunk so no need to tie it on!

 Zoe's idea of decorating seems to involve her throwing ornaments all over the floor and laughing about it!

 Ailsa and Gavin made a mini ice rink in the kiddie pool.  Gavin plans to make a bigger rink by flooding the driveway once the weather stays cold enough.  This was Ailsa's first time on skates and she kept saying, "When do I get my hockey stick?"  Perhaps she should learn to stand first!

 Zoe had her last class at Hippotherapy this week.  She will continue with the program again in January.  We have seen such an improvement with her core muscle tone.  Initially, Zoe mostly laid down on the horse but now she spends the entire 30 minute class sitting up.  And instead of four helpers (one at each leg and one at each arm) she only needs two now because she does not throw herself back like she used it.  We are so grateful that the Jennifer Ashley Foundation has helped us with this therapy cost.  It really is making a difference.

The Aquarium

We got a family pass from the hospital to go to the Aquarium.  The only catch- it was only valid Wednesday morning.  We decided Zoe missing school was worth it since we may not get another chance like this any time soon.  The Aquarium is so expensive, it makes it really difficult for us to go.  A great thing about this pass, was that we were allowed to get in to the Aquarium two hours before normal opening time.  So it was very peaceful and quiet.  The girls loved just watching the fish.  The other families rushed by and did not take time to stay and watch very long but both girls loved just sitting and watching the fish.  I love just being in the moment with my children.  

We ended up dangling Zoe over the horseshoe crab tank so she could pet them.  The staff looked a little nervous that we might drop her in but I was not worried- we know what we are doing :)

 There is a clear tube going right through one of the tanks- how cool is that?  Seriously, this Aquarium rocks!  Ailsa loved crawling through it so of course, we had to give Zoe a turn.  

The things we do for love!  I am not sure this is helping the chronic back and neck pain Gavin is having...

Halloween and Snow

 Zoe made it to school for her Halloween parade.  She was out of hospital on the Wednesday, pissed we kept her home on the Thursday (how dare we!) and very happy to get there on Friday for all the Halloween parties.  Ailsa picked out the pretty white dresses for their princess costumes.  Zoe was a unicorn princess, Ailsa was a butterfly princess...in case you can't tell.  The woman in the photo is Zoe's teacher this year.  So far we are really happy with the class Zoe is in.  They understand Zoe and allow for lots of physical activity during the day but push her academically as well.  So it is a good fit.

 Here in Canada we put our kids to work early.  Everyone pitches in to shovel the snow!

 Ailsa and her "Zo-man."  Zoe had already left for school when we made a snowman so Ailsa called it the Zoe snowman or "Zo-man."

The Ailsa snowman was sitting on Uncle Angus' caravan.  Uncle Angus is visiting from Calgary.  The girls love having him around to play with.  

Zoe Health Update

Zoe is doing well....mostly well.  She is back at school and very happy about that.  Zoe still fatigues easily but she falls asleep when she needs to.  Sometimes in her wheelchair, sometimes on the floor.  She has even fallen asleep in her walker!  

Unfortunately, Zoe has another g-tube infection.  She is having a lot of pain and the site looks nasty.  I brought her to the doctor's on Friday and she started antibiotics.  This is the 4th course of antibiotics in the past 7 weeks (twice for g-tube and twice for bladder infections).  I asked her doctor if there is anything else we can do to prevent infection.  She said that in children with Zoe's type of immune system, infections like this are inevitable.  All we can do is try to catch them early so they do not turn in to more serious infections.

Zoe Doing Well

I always struggle with titles for these dramatic postings.  Zoe is better than a few days ago, so she is definitely better.  But we always hold our breath a little at this stage.  As the doctor said to me on Friday- "Zoe's progress is promising but her lungs are not quite out of the woods yet."

Zoe was able to move back to a regular floor which is great, awesome, amazing, comforting.  She continues to spike fevers and is anaemic but this is not surprising given the virus underlying all of this and the treatments she had.  So she will be in hospital a few days yet.  Also not surprising.

What else to say at 5am when I should be sleeping?

Ailsa has come down with Zoe's cold and I suspect she may be brewing an ear infection.  Despite that, she is in a good mood most of the time.  And we are sleeping over at Angela's house.  It was great to see the girls playing together yesterday.  Ailsa and I stopped at Grandad's on the way home from ballet Friday evening.  So Ailsa has had a lot of time to just be a kid this weekend which is exactly what she needs.  Ailsa talks about Zoe fairly constantly and says, "I still feel really sad that Zoe is in the hospital."  Yep, me too kiddo.