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.

Two Steps Forward, One Back

Zoe was doing really well Wednesday evening but by Thursday morning, her chest X-ray showed more fluid in her chest.  She is third spacing.  Which is not really a very nice thing.  To put it simply.  If you want to freak out and worry even more about Zoe, you can google it!  Needless to say- having the fluids in your body go into your lungs and other organs rather than through the normal system is not a good thing for your body.

However, they do seem to have this under control.  A "good" thing is that Zoe has done this before and they keep good records.  So they know what works for her.  Right now they are giving her meds to flush the fluids out of her body.  It is a balancing act though- if she pees out too many of her fluids her body gets dehydrated and her heart rate and blood pressure go low.  So being in the critical care unit is a good thing right now.  They can keep a close eye on her.

I am probably giving more medical info than most people care for.  But I did want to give an update and my brain is very tired.  So there it is.

Thank you everyone for keeping us in your thoughts and your kind words.  Despite all of this, Zoe has continued to have periods where she is happy, laughing and smiling.  When I read the comments and emails to Zoe, she was full of smiles.

I worked yesterday but it was very challenging since I just wanted to be with Zoe.  I was also completely mentally and physically drained.  So I am not going to work today.  I am going to spend time with Zoe and then go home to take Ailsa to ballet.  Gavin has been home the past two nights so he will take over here.

Ailsa is supposed to have her first sleepover this Saturday!  She loves my friend, Angela's daughter.  Zoe was supposed to go to a respite house this Saturday so we set it up for Ailsa to also have a special sleep over.  As long as Zoe continues to progress well, Ailsa and I will still do the sleepover.  I think it will be a good distraction for her.

Plan this morning is to continue weaning Zoe off the c-pap machine and hopefully switch back to just oxygen.  She was on oxygen only by Wednesday night but it was too soon and her lungs got worse.  So they are taking it slower this time.  Hopefully her body is ready to breathe on its own.

Zoe is sleeping so I am going to do the same.

As always, thank you everyone- for listening, for reading, for bringing me meals, for dropping off groceries, for sitting with Zoe.  You are all amazing!

Zoe in the ICU

Zoe has been in hospital with pneumonia and took a turn for the worse yesterday.  She is now in the ICU on a breathing machine.  They gave her meds to take some of the fluids out of her lungs and that seems to have helped.  Zoe has a bladder infection on top of the pneumonia.  They are not sure if all this extra fluid in the lungs is just pneumonia getting worse or her third spacing into her chest like she has in the past.  Either way, the treatment is the same.

Zoe was actually in a great mood despite not being able to breathe.  She was laughing and rolling around so much that she kept knocking the oxygen mask off and her heart rate kept going high.  They had given her some steroids to help her breathe with the hope that a breathing treatment and the oxygen mask would be enough.  It was not enough and Zoe ended up going to the ICU anyway, but the steroids certainly gave Zoe lots of energy!  The staff all commented that they had never seen a kid so happy to go to the ICU.  Zoe had a male respiratory therapist and a male doctor, so she was laughing and smiling the whole way to the ICU.

The staff in ICU were not sure if Zoe was so active because she was having trouble breathing but we explained that this is just how Zoe is.  When Zoe has been critically ill before, she has not been like this.  She was very sedate.  So the critical care staff had not seen Zoe like this.

We took this to be a good sign.  Once Zoe was asleep and breathing well on the machine, Gavin and I went to get a little sleep.  And we did.  Which will help immensely with the rest of today.

Ailsa is very concerned about Zoe.  Before today the girls had been face timing every day.  Ailsa has been going to daycare and Gavin or I have been picking her up to give her a bit of routine.  She is excited that it is "Yoga Wednesday" at daycare today.

Ailsa is such a empathetic sister.  Here is a conversation I had with her the other night:

Ailsa: "I feel sad because I am worried about Zoe."

Me: "I feel really sad about Zoe being sick too."

Ailsa: "Do you remember when I had all those fevers and I had to get all those tests?"

Me: "Yes, I remember that."

Ailsa: "I don't want Zoe to get tests like that.  I didn't like that."

Me: "Zoe doesn't need a lot of tests right now.  She just needs to get lots of rest and she needs a little help breathing."

Ailsa: "I don't like it when Zoe is sick."

Me: "I know.  I don't like it either."

Ballet and Horses

It is hard to believe that our children are old enough that we are getting into the whole sports/ activities arena.  Zoe will continue therapeutic horse back riding again this year.  We are extremely grateful and lucky to receive a grant from the Jennifer Ashley Foundation that will cover the cost of two therapy blocks (the year consists of three blocks).  We have seen a change in Zoe's muscle tone and even her ability to focus while sitting.  We went to the zoo on Sunday (we are loving that membership!) and Zoe did an amazing job sitting up on the carousel.  Gavin gave her guidance support on her legs but Zoe was able to hold her trunk up and steady while holding on to the handle!  The girls chose a double crocodile to sit on so Ailsa was right behind Zoe.

So What About Ailsa?

We are always conscious of making sure Ailsa gets plenty of our attention and resources.  We asked Ailsa if she would like to be involved in something this year.  We did swimming classes in the past.  Ailsa asked about joining an ice hockey team.  This girl is obsessed with hockey!  When we talk about going to Kindergarten next year, Ailsa asked, "Do they have a good hockey team?"  She was disappointed to know that 3 year olds do not play on teams.  So she decided to do ballet instead.  She determined (yes, this was her idea) that she would do ballet to help her get ready for hockey and that she would learn to ice skate this winter.  So far Ailsa LOVES ballet.  Every morning she asks, "Is this a ballet day?"  The only other day that competes for her attention is yoga day at school.  If we say, "No, it is not a ballet day."  She immediately says, "Well, is it a yoga day then?"

Ailsa was practicing ballet last night.  Apparently an important part of practice is wiggling her hips.  We got her a helmet because you have to wear a full helmet if you ice skate on any city owned ice.  We got her some skates from a thrift shop so she is ready to go!  You can guess who picked the colour for the helmet!

Hey Curly Top- This One's For You

As you start your new round of trial drugs, we know you will be cruising the internet while waiting and waiting and waiting around the hospital.  So we hope this picture puts a smile on your face.  As always, we've got our fingers crossed and still hope for that miracle.

Three curly girls. 

What Ever Happened to Sleeping In???

Ok, all parents face this- children who wake up way too early.  We were spoiled for a while.  We were "lucky" that Zoe was a "cardiac" baby.  I will be the first to admit that there are some advantages to a child who spends all their energy on keeping their body going and therefore needs extra sleep.  Zoe slept a lot as a baby.  She couldn't even cry very much- would let out a squawk and then pass out from the effort.  By the time Zoe was 8 months she could cry for 7 minutes before passing out.  Yup, I am serious, just seven minutes.  I know because we timed it so we could discuss it with her cardiac team. The longer she could cry, the more excited they would get.

Fast forward to 7 years later.  Sometimes Zoe would still sleep in in the morning- get up at 9 or even 10!!!  She outgrew naps a year ago but we still implement quiet time in the afternoons where Zoe and  Ailsa pretty much play in their beds for 30 mins and mom and dad get a mental break.  If Zoe is sick, she will sleep during this time but thankfully that has not been happening as much lately.

In April of this year Gavin and I made a difficult decision to get a g-tube for Zoe.  What made us take this step even though Zoe continued to eat well was the signs of starvation we began to see in our child.  Zoe was having headaches, low blood sugar problems, she was very cranky and inconsolable at times.  On top of that, we had noticed a decline in Zoe's energy levels.  For those of you that know Zoe, she is a constant ball of motion.  So to see a slow down meant something was wrong.  We (and the doctors) worried it might be a decrease in cardiac function or even a slowing down of her body's metabolic system).  We are happy to say that since Zoe got her g-tube in August she has been a fireball of energy again!  Which means, no more sleeping in!  Not that her sleeping in let us sleep in very much since Ailsa gets up bright and early but I do miss those morning moments with just Ailsa and I.  Being the amazing wife that I am, I would let Gavin sleep while Zoe slept and Ailsa and I would have some special alone time.  Being the amazing husband that Gavin is, he would sometimes return the favour.  So now we have two energetic children early in the morning and two very tired parents!

For the Record

Ok, for the record when I mentioned an advantage to having a child with major cardiac issues, that is probably the only advantage.  The rest of it- the chance of sudden cardiac death, risk of blood clots and pulmonary embolisms, the fact that your child uses so many calories just to make her heart pump and seeing your child routinely turn blue probably outweighs any advantage gained.  So while I can joke about enjoying our sleepy baby, I would give anything to fix Zoe's heart.  Because Zoe would still be Zoe without her cardiac issues.  I wouldn't fix her chromosomes but I would not hesitate to take away her heart and lung problems.

Zoe's New Chair

We are so excited to finally get Zoe a proper wheelchair!!!  The wheelchair stroller that was passed on to us from another family has worked well until recently.  Since the wheelchair can not fold, we had to wait to get a van before getting the chair.  Because we have such amazing people in our lives, we were able to raise enough money to make the van a reality at the end of August.  I have to say, now that we have the van I have no idea how we did without it for so long!

So now Zoe has her new chair that looks awesome- she sits up so big and tall like the big girl she is.  The chair gives her the support she needs to stay sitting on her bum instead of slumping down.  The chair also works great at school- allowing Zoe to get closer to the tables.  Our awesome vender whom we have worked with since Zoe started with equipment at the age of 2 even threw in an extra backpack that fits the chair perfectly and a sun shade which is a must for Zoe.  The government does not cover these items and anything made for special needs is ridiculously expensive so we appreciate this gift.

To Blog or Not to Blog

We have noticed a decline in people writing on and reading blogs.  The world seems to have gone the way of face booking, tweeting, instant messaging, etc.  So why bother with a blog?  I myself like reading blogs, things appear in order, you can scroll down and look at old posts without face book jumping around and rearranging past messages randomly.  The blog also serves as a time reminder for me- I can scroll through and look at the past years and see just how far we have come.  Admittedly, the blog takes more energy to maintain, more time to post on.  But I kind of like this rather than posting every random thought that passes through my brain.  So for all of you out there, if you do follow this blog- have no worries.  We Will Blog On!  And for those of you who have blogs that we follow- we will keep reading.  And for those of you on Facebook who keep telling me I need to get an account- I am sorry but I am just not ready for that commitment.  I enjoy my life of less technology.  Who knows, perhaps someday...just not today.

Back to School

 Zoe was very excited the first day back to school!  Zoe has a new teacher this year and so far it seems like it is going to be a great fit.  The teachers are able to include lots of body movement breaks for Zoe as well as lots of physical activity so Zoe is loving school.  Zoe also has a Hopsa sling in her classroom- Zoe loves the Hopsa!  The Hopsa is a body sling (think Jolly Jumper) that is on a track so Zoe can move all over the classroom independently and get right up to things to explore, learn and play.  Zoe loves spinning and jumping in the sling- things she can not do in her walker.  School is also looking at getting Zoe a new walker for school.  The one she had been using for the past few years is just not working well for Zoe.  We brought her Mustang walker in from home and everyone was amazed at how well Zoe is able to walk in it and how upright she keeps her self now.  So hopefully we will be able to figure out a great solution for school so we do not need to send the walker back and forth every week.

Big Girls Keep Getting Bigger!

Ailsa moved in to the bottom bunk in Zoe's room.  We were holding off with the move since Zoe is still very restless in the night.  However, Ailsa decided she it too big to keep sleeping in our walk in closet.  So Ailsa moved in to Zoe's room last week and is loving it.  She is so proud, she keeps telling everyone about it.  Luckily, Ailsa is a very heavy sleeper because Zoe has continued kicking and crying in the night but so far, Ailsa has slept through it all.  So it looks like this might actually work.  We love seeing the girls share a room.

Getting Ready for the Fall

It's that time of year again- time for all sorts of colds, coughs and pneumonia!  Ailsa has a nasty cough right now that I suspect is the enterovirus everyone is talking about.  It is just a cold to kids like Ailsa.  A nasty cold- she has been coughing and mucousy for over a week now.  But it should hopefully just stay a cold.  Zoe actually had enterovirus three years ago and ended up in hospital with pneumonia.  So far she has not caught what Ailsa has so even though the virus this year is a different strain, hopefully having had it before Zoe will be immune.  We shall see.  

Apparently "baby" woke up with congested lungs this morning and a round of chest physio did not clear her out so she had to get "the mask."  The other "patient" Zoe is getting her tube feeding on Ailsa's bed while Ailsa tends to the sick baby.  At one point Ailsa asked for medicine and I handed her an empty prescription bottle and she said, "Z-O-E.  Mom, this medicine is for Zoe.  You can't play with REAL medicine!"  In my defence, the med bottle was empty!  

Zoe is Home- She is Doing Great!

Zoe came home on Tuesday.  She ended up staying a few extra days because she had a fever and they wanted to make sure it was not an infection from the g-tube.  The day after Zoe came home she was ready to go!  This is us walking at the park.  This park has a great fountain Zoe loves but we made her just touch the water with her hands, not get soaked under it like she loves.  We didn't think getting the bandages soaked in a public fountain would be the best thing for a new surgical site!  Zoe has been doing great- she is tolerating all the tube feedings and still eating lots of food with her mouth.  The tube feedings do not seem to curb her appetite at all which is great- that is what we hoped for.  Zoe will still eat as much as she always has (which is quite a lot for a child her size!) and the tube feedings will just be extra calories to boost her growth.  When Zoe is sick, we can use the g-tube for hydration the same way we used the nasal feeding tube in the past.  And if Zoe is really sick and does not have the strength to eat, we will have the tube ready to go and she does not have to go through the  procedure of us shoving a tube down her nose.

Sister Bonding

As always, Ailsa has done amazing with all these changes going on.  She visited Zoe in hospital and they loved playing together.  The picture below is from the rooftop patio at the hospital.  Zoe loved sitting outside in the shade.  The fresh air was great for her lungs which became a bit junky after the anaesthesia and laying around in bed.  Normally we would give Zoe chest physio which involves hitting her back firmly.  We did not want to do this and cause Zoe pain at the incision site so her sitting up and getting fresh air was very important to clear her lungs.  At first, sitting up was painful for Zoe but luckily she had a little sister to help distract her!

I Want to Be Zoe!

Ailsa always says, "I don't want to be like Zoe, I want to BE Zoe!"  Here is a picture of the girls both playing in walkers.  Zoe is in her new walker and Ailsa is in Zoe's old walker.  As you can see, the new walker is quite a bit bigger than the old one which is why the new one does not fit in our car if we are carrying anything else.  We love how fast Zoe can go in the new walker.  It also supports her in a more upright position which is great for her spinal development.  Ailsa often says, "Zoe's new walker is too fast."  It is not often you hear that complaint about disability equipment!

Surgery Went Well

 Zoe sleeping after surgery.  They were able to do both the g-tube insertion and the eye surgery at the same time.  Zoe had a lot of pain after surgery but did really well.  She also had a lot of gagging which is why they have the drainage tube in her nose.  That way she does not throw up.  They were not able to get the bigger size tube either in her nose or her stomach because Zoe is so petite.  So far the drainage tube is working well so that does not seem to be an issue.  With the g-tube, they will have to replace the current tube with a larger size before we can move on to the mickey button.  Which means another procedure in the surgery room but we will cross that bridge when we get to it.

 Despite being in pain, Zoe insisted on sitting with Lyn (no surprise there!).  I love the little smile she is giving Lyn.  Got to love that morphine!

The nurse could not believe Zoe insisted on sitting up after only 6 hours.  She sat for 20 mins and then had to lay down when her stomach was really sore.  We told the team, Zoe is a mover- she does not want to stay down!

Zoe is now able to have almost an ounce of clear fluids through her stomach tube every four hours so things are moving along.  Zoe was not impressed when she signed "milk" and we said she can not eat through her mouth for a few days!

Getting Ready for Surgery

Everything Set for Tomorrow

Zoe has been a little congested this past week but her lungs are clear so we are good to go with surgery tomorrow.  As the time approaches, Zoe is starting to get a little nervous.  She has had some great questions about what it will be like.  She is worried about the recovery period and having pain.  And in her little seven year old logic, Zoe is trying to bargain her way out of it by saying things like, "I'll just stay home all the time and eat to gain weight instead of getting the tube."  Zoe acknowledges that she knows this is necessary, she just doesn't like it.  I reassure her that I am feeling exactly the same!

Making Choices for Your Child

Every day parents of children with special needs make choices that no parent should have to make.  No one has ever asked me if I want Ailsa to eat with her mouth, use her legs to walk or if we want to implant medical devices in to her.  Many times these choices are not really choices in the sense of if we don't do this for Zoe, she can not survive.  But at the time of getting these things done it often feels like a choice and as a mom I get wrapped up in making sure we are doing the best.  Ok, not just wrapped up, I get a bit obsessive!  I know that all we can do as parents is make the best decision at the time with the information we have.  I know that.  But then I get overwhelmed with the feeling that choices we have made for Zoe have made such an incredible difference in her quality of life.  So these moments become a bit daunting.  I know that every parent is overwhelmed at times with making decisions for their children but I guess one difference with complex children like Zoe is that the choices we make for her could have serious consequences.

How to Handle Those Moments of Overwhelming Fear About Your Child

I have found some great ways to pull back from that fear and live in the moment.  Spending fun time as a family is a great way to just live in the moment and remember the important things.  We went to the Art Gallery of Ontario last weekend and had a great time.  The kids did amazing- we were there for 5 1/2 hours!  We found some great sculptures in the contemporary section that the kids could walk around and one of them you could actually go inside it.  Zoe walked all over the place in her walker.  I have to say, I was impressed at the staff being so respectful when this little, wild haired child was flying about in her walker.  Zoe loved an instalment in the sculpture room that played all sorts of sounds and had flashing lights.  She just stood there in her walker laughing and listening.

We made a stop at the gift shop on the way out and Ailsa said, "I want to get some paints because I really need to paint something now."  How could I say no to that!  Both girls made interesting paintings that night using brushes as well as their hands and feet.  It was great to see them inspired by great works of art.

If All Else Fails...

...go shopping!  Years ago we put away the infant onesies that made Zoe look younger than she was.  At the time, she was 2 or 3 and still fitting in to the 18 months size.  After surgery it will be important for Zoe not to pull on her tube or bandages.  Zoe is a very handsy little girl so this is difficult for her.  So we thought having some onesies that keep her hands away would be a good idea.  Zoe does not fit the 18 months size but we guessed she might fit the 24 month size (yes, she really is that tiny still!)  So I ran around on Monday looking at different stores trying to see who has the largest onesies.

What I found out- Carters makes the biggest 24 month onesie.  And they had a sale on all the short sleeve ones.  So the timing worked out perfect.  I tried the thrift store too but they did not have any onesies in the large size.  They did however have some super cute clothes for back to school!  How can I resist when things only cost $2?

I used to have this superstition (and maybe part of me still believes it) that if I buy things for Zoe she has not used yet she has to be around to use them.  Depressing thought, I know.

How Can I Say No?

Speaking of Family Time- Ailsa said this morning, "Can I stay home from PreSchool today to spend time with Zoe, I will miss her when she has her surgery tomorrow."  Ok, I realise that Ailsa uses any excuse to stay home, but really how could I say no?

Zoe's new ride- our van fundraiser

We have finally finished all the paperwork to get funding for an accessible van.  These vans are not cheap!  We have been approved to cover over half the cost but that leaves $27,300 uncovered.  We started an online fundraiser...these things are kind of weird...writing old friends and saying, "hey, can you give us money?"  But given all that has happened in our family the past few years, we can not afford to take out a car loan.  So we have entered the world of virtual fundraising.  We also plan to host a thank you party here in Toronto for anyone who donates $40 or more.

Check out our gofundme site: http://www.gofundme.com/cia5uc .

Thanks for looking, spreading the word and maybe even donating.  If you aren't able to donate or just don't want to that is fine, we totally understand.  Really, we do.  But if you could spread the word that would be awesome too.  Love you all!  Now, an announcement on our brand new no gofundme approved funding level!  Drum roll please!

New gofundme reward level/car for sale 

One thing we can not mention on the gofundme site is that we want to sell our current car to cover some of that $27,300.  We can not afford the insurance to own two cars and given that Zoe's new wheelchair will not fold, she could never ride in the old car so why keep it?  Our car is a 2005 Toyota Prius.  It has about 123,000 km on it.  It has never been in an accident and we recently replaced the tires, car battery, break pads and windshield wipers.  We always get it serviced at Toyota since it is a hybrid car. It is extremely well cared for mechanically, with a few scratches and nicks and dints from being well loved and well used.  We will miss her.

So, should you or anyone you know be looking for a great car, here is an offer for you.  For anyone donating $10 000 (and in the Greater Toronto area) we will give you our car.  Just like that.  It's yours.  We are calling this funding level the "Big Fat Bag of Awesome" level.  This level is only available to one person, of course.  If we get two funders of this level it would be amazing- but we'd have to think up something else to reward the second person (hmm, that's tough.  Maybe squatters rights in our backyard shed that was damaged in the ice storm last winter and now leaks?  Maybe free compost from our compost bin for a year?  Maybe our third born child, if we ever have one?  We'll figure that out later, if it comes to pass : )

Of course, if anyone wants to just buy it outright we hope to get around $9500 for it on the open market (or best offer).  If you want more information, let us know by e-mailing or leaving a comment on this blog post.  You can check out http://www.cars.com/toyota/prius/2005/snapshot for details of the 2005 Prius, reviews, etc.  All from awhile back, but gives you some info on the car.  Please spread the word if you know anyone who is looking.  Thanks- you are all a big fat bag of awesome.  As Ailsa would say "true story".  She is so funny!  

The car is blue, by the way.  We named her Petry, after the crazy sales guy who was stalking us after we bought it.  We'll tell you that story another time ; )


*thanks to my friends Ryan and Joel from the band McKenna for the quote from their song "You're a big fat bag of awesome".  

Pictures from Our Trip

1p36 Conference

We were very lucky to go to the 1p36 Conference this year in Cincinnati, Ohio.  We were at the first conference in 2007 and boy, things have changed!  There were 65 families this year!  Some of the research has also changed, so that was interesting.  One of the things I found most interesting is that Zoe's heart condition (LVNC) which is not as common as other heart problems has now been linked to 1p36.  We thought this all along but there was not research to support this.  Also interesting to hear the debate that the bigger deletion size means more delays and medical issues.  For a while they were saying size didn't matter, but they are starting to think the more genes you are missing, the more problems you are going to have.  Unfortunately Zoe has a very large deletion.  Knowing this info does not change anything but it is interesting.  Plus, we can appreciate just how amazing Zoe is doing for a person missing all those important genes!  Genes, shameenz, who needs those genes anyway?

We started our road trip off with an overnight at a cabin a few hours away from Cincinnati.  And what would camping be if we didn't roast marshmallows!

 It is always a good idea to give small children sharp sticks!  Ailsa enjoyed eating the marshmallows raw...

 ...Zoe thought cooked marshmallows were funny, but not so tasty.  Zoe does not usually enjoy sweet foods but we always let her try them if she wants.  Who knows, one day her sweet tooth might grow in.

Speaking of Teeth

Zoe lost her first tooth while we were away!!!!  When I went to brush her teeth I noticed the tooth was just gone.  No blood, no fuss, no tooth.  Just a cute little gap.  I can't believe my baby is so big now!  And we don't even have a little tooth to keep as a memento.  We are guessing Zoe swallowed it and we weren't going to go looking for it.

Next Stop- St. Louis, Missouri

After the conference we drove to St. Louis to visit our families.  Unfortunately by the time we arrived there, Zoe was showing signs of a bladder infection and very uncomfortable.  So we went St Louis Children's Hospital and started antibiotics.  A few days later, Zoe still had fever and lots of pain so we took Zoe back to the hospital and she was admitted for a few days.  But first...

 In between hospital visits we squeezed in a trip to the St Louis zoo where the girls got to ride the zoo train they have been talking about for weeks.  As you can see- both girls enjoyed the ride.

 Zoe walking in her upsee at the zoo.

Hospital Visit

The Children's hospital has an outdoor garden on the roof.  It was beautiful.  We could only stay outside for short periods of time because St Louis is HOT!

 Zoe really liked the swing in the garden.

 Mommy and Ailsa spent some special time together in the garden while Zoe was with daddy.  Ailsa is such an amazing sister and so mature for her age.  We have to remember though, she is only 3 and needs lots of special attention too!

What Do They Put in Their Food?

From a very young age, Zoe has loved going to Denny's restaurants.  She even showed us she knew how to spell Denny's when we were on a car trip and when I spelled Denny's, Zoe immediately laughed and signed eat.  We are beginning to suspect they put something in that food because Ailsa is now a Denny's junky too!  Every time we stopped for food, Ailsa would say, "Can we eat at Denny's?"

Ailsa showing off her dinosaur chicken nuggets at Denny's on the way home.

You're Not Gonna Stop Me From Having Fun

There is an Ani Defranco song called "Gravel" that has the lines:

"and maybe you can keep me from ever being happy,

but you're not gonna stop me from having fun."

There are so many things in Zoe's life that could make her unhappy.  Unfortunately this latest problem does not seem to be a simple bladder infection.  Zoe continued to have lots of pain when we returned home.  She is now admitted to our hospital.  No matter how much pain Zoe is in or how unhappy her circumstances, Zoe always manages to have fun.  She is a constant reminder of what it means to live in the moment and appreciate all that the moment has to offer even during times of suffering.  So here is a picture of Zoe still having fun while in hospital:

Some Posts Easier Than Others

I love writing posts about how great everyone is doing.  I love posting cute pictures of my girls.  But some days just suck and those posts are important too.  They let other parents know they are not alone in having sucky days.  They also allow me to vent/ express what is on my mind.  So here goes...

Some Days Just Suck

We were at the hospital all day (left here 9am, home at 6pm) for two appointments.  Zoe had to see her opthomologist and Ailsa had a nephrology appointment.  The outcome?

-Ailsa's kidney function is a little worse.  Which means the med she is on is not working.  Which means she needs more medication.  Which means they have not figured out how to stop the scarring that is occurring.  Which means she is still going downward and not stable yet.

Which sucks.

-Zoe's eyes are getting drier.  Zoe is followed for her dry eyes- she does not produce tears.  Dry eyes can lead to, well to put it bluntly blindness.  When the cornea is too dry it gets damaged and then stops working.  So keeping Zoe's eyes lubricated is important.  We give her eye drops four times a day including night time drops which are not drops at all but basically like vaseline which if you ever tried to get a little glob of vaseline in to a squirming child's eye you know it is not an easy task!  So what it means is a another minor eye surgery for Zoe.  No big deal.  We know there are much worse things that could happen.  But seriously, can the poor kid just catch a break?  One good thing is that we have a date for her G-tube surgery so they are going to try to coordinate this procedure with that one so it will be one less anaesthetic.

Some Days Do Have a Bit of Light Peaking Through All Those Clouds

Every night Ailsa asks us, "What is your favourite thing from today?"  Tonight I said to her, "I loved seeing how amazing my girls are.  You (Ailsa) did amazing getting your blood test.  You are such a good girl and I am so proud of you.  And watching Zoe dance in her upsee was pretty awesome."  We got Zoe's upsee (a walking device that is awesome! see website for more info:
http://www.fireflyfriends.com/upsee ) last week in the mail and have used it a few times.  Zoe is loving it so far.  Today I could not figure out what she was trying to do until she signed, "Ailsa."  Ailsa was randomly dancing in the hall of the hospital (because that is what one does when one is three years old).  I realised Zoe was trying to dance too.  So we stood there stomping our feet and giggling.

That did not suck.

That was awesome.

Fun Month So Far

Zoe and Ailsa napping in the tent while camping Canada Day weekend. 

 Zoe loves the spinning strawberries at the local parking lot fun fair.

 Ailsa holds on to our gigantic cotton candy stick.  Zoe remembered cotton candy from previous experiences and refused to open her mouth (she does not like anything too sweet).  Ailsa was very excited to try cotton candy for the first time.  Alison (in the picture) came along to give us an extra set of hands...I think she just wanted to play too :)

 Ailsa, Zoe and Gavin sitting on a boat at the Easter Seals Regatta.  This is one of Easter Seals biggest fund raisers- people who want to enter their boat have to raise money.  They ask cute Easter Seals kids (like Zoe) to show up and ride around on rich people's boats and then go to a BBQ.  It was a fun day and as you can see- Zoe loves being on the boat.

 This picture cracks me up because it is so similar to a picture we took two years ago of Ailsa at the Regatta.  She looks totally comfortable and at home on the water.

 This was Zoe's expression the entire trip.  Watching Zoe is very rewarding for donors because they get to see what a great time she is having.

This little girl with Ailsa is a sibling of a child with special needs who rides at Hippotherapy right before Zoe.  They hit it off and had a great time playing together all day.  We hope to get together soon for a play date.  The child with special needs is very similar to Zoe and they enjoy seeing each other too.  We hope this is a relationship we can build for Ailsa- having a friend who also has a sibling with special needs would be great for her.  Gavin and I also seem to have some things in common with the parents.

Summer Already!

Wow, I can't believe it is summer time already!  Zoe's last day of school is Friday and we are going camping on Saturday- great way to kick off the summer and keep Zoe distracted from missing school too much.  My very pregnant friend Angela is going to camp with us.  She has an almost two year old who gets along great with Ailsa.  The two of them love hanging out.

Pictures From Last Couple of Months

Zoe and Ailsa were flower girls at Riann and Daine's wedding in February.  Riann was Zoe's first respite worker when she was a baby.  Riann went on to get a full time job but we are still close with her even though she does not work for us anymore.  Riann and Daine took care of Zoe while I was in labour with Ailsa.  Riann was the first person (besides us and the midwives) who got to hold Ailsa.  Daine was too afraid because she was only four hours old!

We are rolling our eggs down the hill on Easter.  Don't ask me why we do this- it is some crazy tradition in Gavin's family :)  The girls thought it was hilarious.  Alan was at the bottom of the hill catching the eggs before they could roll in to the street.  

Riding the zoo mobile.  Both girls love riding around and looking at all the animals.  Zoe had just gotten out of hospital from pneumonia so we were taking it easy and not doing too much walking.  Someone gave us a pass for the zoo as a Christmas gift and it has been well used- we are going every other week and sometimes twice in a weekend!

Playing in the ball pit at Zoe's school on family pizza night.  You can see Zoe's purple legs sticking out- she loves to bury herself.  As you can see, Ailsa is still a little cautious in the ball pit.  Zoe LOVES the ball pit.

Summer Plans

Zoe will go to camp the first two weeks in July and then we are all going to the 1p36 conference in Cincinnati, Ohio.  We are very excited!!!!  We have not been to a conference since 2010.  The conference has really grown since it started back in 2007.

After the conference we are going to drive to St Louis to see Gavin and my families.  I have four sisters, a brother, and many nieces and nephews in St Louis.  Gavin has a cousin with his family and his Aunt Patsy (who Zoe loves because she talks in a "funny" voice to her and knows sign language).  We are so excited to see everyone this summer.

Our road trip does not end there- we are then driving to Chicago to visit a family we met camping in Kentucky five years ago.  We bonded over the craziness of camping in 100 degree F weather and cave spelunking with your special needs child strapped to your chest.  This family has four beautiful children (at the time it was three) and one of the daughters has Down Syndrome.  We are excited to catch up and let our children play together.

By the time we get back from our big trip it will August.  We hope to do a camping trip in New York with my cousin and her family from Massachusetts.  And we will probably squeeze in another small camping trip closer to home if we can.

The Big Weigh In

The great news is that Zoe has grown 5cm/ 2 inches in the last year and continues to thrive and develop.  She amazes us with her persistence in learning new skills every day.  Zoe can now finger feed herself and hold on to her cup for long periods of time!!!!  This is big!!!!

Zoe feeding herself cake and whip cream at Gavin's Birthday dinner.  See how the whip cream is actually near her mouth now!!!!  She is so proud of herself.

Unfortunately, we have noticed that Zoe has not gained any weight in the last 2 years.  She has actually started to lose weight in the last few months, so she now weighs less than she did 2 years ago.  We have added calories to her food but it has not made a difference.  Zoe is not able to eat a lot when she is at school.  She does a great job and the teachers try their best but Zoe does not want to sit there for 45 mins and eat while the other children play.  Zoe has never felt hunger like most people do.  She could go all day without food and would not complain (she has done this for medical tests).  When she sees her friends playing after they gobbled down their lunches, she clamps her mouth shut until the teacher gives up and lets her play.  Zoe has also been very tired in the mornings, so sometimes we are only able to get a very small amount of food in to her before school.  Some mornings we can not get Zoe to eat anything at all.  Zoe eats great at dinner time- she loves eating as a family.  We all finish sooner than Zoe but we stay at the table talking about our day and enjoying the together time.  So dinner is not a problem.  But Zoe only eating one good meal a day is a problem.

Why Does Weight Matter?

At this point, Zoe has used up all her fat stores.  She has grown in height and has grown even skinnier.  You can see every rib bone, hip bones, spine, etc on Zoe now.  Her legs have also gotten very thin and Zoe is not able to build any new muscle.  The fact that she is starting to lose weight tells us that she is out of fat stores and her body is going in to starvation mode.  Having fat in your body is also necessary for brain growth and function, good energy levels, healthy immune system, etc the list goes on.

So Why Isn't Zoe Gaining Weight?

We believe that Zoe uses an extraordinary amount of calories every day.  She is constantly moving, wiggling, playing, rolling, etc.  Even in her chair, Zoe is still waving her arms and legs around.  She loves to move!  In the past, Zoe was able to get enough calories in to grow at a nice slow- paced Zoe rate.  She has always been small, but she was always gaining on her own curve.  At this point, Zoe is not able to get enough calories in to support any growth and is now unable to even maintain her weight.

Options

We talked to Zoe about various options- she DID NOT like the idea of the teacher pulling Zoe aside in a quiet area to help her concentrate on eating.  She DID NOT like the idea of going back to forced oral feeding we had to do when she was a baby.  Zoe loves eating and wants to continue eating but she is older now and wants to eat when she wants.  And she is stronger now so forcing her is almost impossible!

When we discussed the G-tube option (a tube inserted into the abdomen that delivers nutrition directly to the stomach) with the team, Zoe became quite excited.  She likes the idea of us using the tube to feed her when she is tired or too busy (Zoe's words- apparently she is too busy at school to eat).  Zoe will continue to eat with her mouth, the tube will be there to supplement/ give her more calories.  Zoe already gets nursing at school so this will not be a problem.  Having the tube will make it easier when Zoe is sick or dehydrated- currently we have to insert the NG tube in Zoe's nose and she is not a fan of the procedure.  Zoe had always been good about leaving the tube in place when she was younger but this last time, in April, she kept pulling the tube out.  She does not want it there.  The G-tube can be tucked away and not bother her.

Swimming and Baths

One of our big concerns was that Zoe would not be allowed to swim or take baths- Zoe loves water.  However, the team said Zoe will get a simple g-tube that is allowed to go in water once it has healed. So we are all happy about that.

We meet with the surgeon next Friday to find out when the tube insertion will happen.  We are hoping in August- that way it does not interfere with our trip and Zoe does not need to miss any school.  Because Zoe has been losing weight, they may not be willing to wait that long.  We will see.

Ailsa

Jeez, this is already a long post but I wanted to put an update about Ailsa.  I made this a long post because feeding issues, tube feeding, weight, etc are such a problem for 1p36 children.  I wanted to explain why we are getting the tube now so other families looking for info have it.  We have many posts on tricks for oral feeding (I feel like we could give a seminar at the conference!) so if anyone needs any info- just ask.

Ailsa has finally been given a diagnosis.  She has a problem with her kidneys that does not seem to be genetic or have any reason for being there.  At this point, we need to monitor her and she is taking medication to stop further kidney damage.  We do not know how things will progress but we do know this is a lifelong diagnosis and she will need monitoring and medication the rest of her life.

IT SUCKS!

That is about all I can say about that.  I hate watching Ailsa get poked or taking her medication.  I hate that she already has some kidney damage and it can get worse...much worse.  I hate not being in control!  (Yes, I like to pretend I have some control over this crazy life of mine!)

Having said that, we know how lucky Ailsa and we are.  She is doing wonderful right now so we focus on that.  That is all any of us have- this moment.

Can you tell therapy is working :)

We hope you all have a great summer and we will post lots of pictures of our crazy adventures.  We are very excited about everything we have planned.  And we know everything always goes according to plan...

I love this picture of Ailsa giving her baby medication while I am giving Zoe her night meds.  Ailsa has a very strange idea about what is normal but that is true for any of us.  All we know is our normal.  And our normal is pretty awesome....most of the time.

Ailsa and Zoe's Birthday Party

On Sunday we finally had Zoe's 7th birthday party.  Zoe's birthday was in February and we planned the party two other times but both times Zoe ended up in hospital.  So this was party take three for Zoe and a joint party for Ailsa whose birthday is in May.  Zoe is such an easy going child that she was fine with sharing her party with Ailsa.  Ailsa was very excited to have a joint party with Zoe.  We are so lucky to have so many caring people in our lives who are there to celebrate and understand when the celebration has to be delayed!

A Very Special Gift

We were extremely touched that Erin, Jaxsen, Gill and Skip (Shelby's family) came to the party.  There were a few tears all around, but I think it was really good for all of us to be able to celebrate Zoe's birthday while remembering Shelby.  I really admire Erin for staying involved with the 1p36 group.  I can not honestly say if I would be so strong if I lost Zoe.

Erin and Zoe having a snuggle.

Gill and Skip (Shelby's grandparents) gave Zoe a very special gift- Shelby died on Christmas Eve and therefore she was never able to open her presents that Christmas.  Gill and Skip had made a build-a-bear for Shelby.  The bear is all dressed for Christmas, plays "Rudolph the Red Nosed Reindeer" and even has a wig with pigtails perfect for pulling on!  The Bear's name is "Believe."  We have many things that remind us of Shelby- lots of her equipment and clothing that Zoe uses.  But this is a very special gift that Zoe will always have to remember her friend Shelby.  I am very touched by the gesture and I admire Gill and Skip's strength in letting go and moving on.

Zoe with Shelby's bear.  The ever present Lyn in the background.  The girls came up with the invite list and Lyn was the first one on the list.  Which was good since we had the party at Lyn's!

Ailsa also got a special gift from Shelby- handmade PJs from the specialty shop at the hospital.  Erin had gotten them for Shelby for Christmas.  Ailsa will wear them, pass them on to Zoe who will probably fit them in about 5 years and then we can keep them as a special gift from Shelby.

Thank You Everyone!

I did not expect the girls to get many gifts- I always tell people to not feel that they need to bring anything.  I did ask for clothing this year since the girls are out of clothes the next size (I did not know that Erin was bringing me two huge bags full of clothes!).  The girls did get clothes and they also got completely spoiled!  Thank you everyone for the wonderful books, toys, bubbles, etc.  As I said, we are so lucky to have you all as part of our lives.

 We had the party in Lyn's party room (per Zoe's request).  The pool table in the room was a big hit.

 Grandad with Zoe.

 Alison and Ailsa.

 Blowing out the candles.

Thank you Grandma Jean for the photos!  We missed you Grandpa Ken!