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: