Thursday, December 15, 2016

December Already!!!!

I can not believe we have not posted since April!  It is very cliche, but I have to say- time really does fly by.  So here is a summary of May and summer:

We have spent lots of time at the zoo!  The girls love it, even when it is cold or rainy or very hot.  Any day of the year, the girls vote to go to the zoo as the day's activity.  Here is a picture from last May when Grandad came with us.

Happy Birthday Ailsa!!!!!

Ailsa loves camping so much she asked to go camping for her birthday in May.  We rented a heated Yurt and had a great time.  It was very chilly out and even snowed!  But the girls had a great time.  This is a picture of them outside when it was sunny.  They LOVE the hammock.

The weekend after Ailsa's birthday was beautiful weather wise- sunny and warm!  We had a great party in the backyard with family and friends.

Ailsa posing with her piƱata.

Summer Fun!!!!!

Zoe went to a camp at her school for two weeks in July and then we had the rest of the summer to play at home and travel.

Felicia (Zoe's nurse) brought over a shaving cream activity one day.  Both girls loved it.  We had lots of days to play this summer at home.  It was awesome!

In late July, we went camping with the girls' cousins in New York.  The last few years we have been able to camp with my little brother from Pennsylvania.  We pick campgrounds that are about halfway between our families and have a great time.  We love that our girls get to know some of their many cousins.

We went to Darien Lake Amusement Park in New York again this year for four days.  We camped in their campground, had the free buffet breakfast and walked to the amusement park every day.  We all had a great time.  Because we are staying in the campground, we can enter and exit the park as much as we like in the day.  This works great because we can play for a few hours and then take a break for a bit at the campsite.    

Our big trip this year was going all the way to Oregon on the west coast of the United States to visit my brother Tom and his family!  We drove to Chicago, Illinois and then took a train from there.  The train ride was 46 hours long going there and 48 hours on the way back.  The girls loved it!

This was the girls fist time going to the Pacific Ocean.  It was very cold...

Ailsa dipped her toes in the ocean and then ran back to snuggle with her cousin Kate under the blankets...

Zoe insisted on walking in the water!  When she got in thigh deep, we made her come out and get warmed up.

This is us on the train on the way home.  Zoe was sleeping again.  The girls loved our sleep car and eating out all our meals in the food car.  Zoe was having some lung issues during the trip so she ended up sleeping a lot but was able to still have a good time.  And we are so grateful that Zoe has an amazing team of doctors who know how important it is for Zoe to be able to travel and have a life.  They gave us puffers to take "just in case" to hopefully avoid having to go to the hospital while on our trip.  The puffers really helped and kept Zoe well enough to stay out of hospital.  This was our first summer with no hospital stays in 7 years!!!!  It is amazing how much time you have when you are not spending so much of it in the hospital!  And yet, time goes by just as quickly, you just spend the time in more fun ways.

Zoe Health Update:

Zoe has had an amazing year!  She has not had an overnight stay in the hospital since November of last year!  Zoe's latest tests show that she has more scar tissue in her lungs so her lung function is worse.  However, she has been able to fight off her infections with oral antibiotics at home.  We continue Zoe's chest physio routine that helps Zoe clear the mucus from her lungs which helps her fight off the infections.  All of Zoe's doctors have been surprised at how well she is doing.  We are just enjoying these moments at home and try not to think about the "what ifs" of the future.  Zoe is getting bigger and stronger so hopefully that is enough for her to be able to keep fighting infections without so much medical help.

Last year, Zoe's liver levels were very high and the doctors were quite concerned.  Zoe's blood tests now show all her numbers to be at the normal level.  The liver is an amazing organ and can heal itself.  Since Zoe's body has not been bombarded with high dose antibiotics and morphine all the time, her liver has had time to recover.  So that was very happy news.

AND even more exciting- Zoe is a whopping 16kg (35lbs)!!!  Since she has been healthier, we have been able to get a little meat on her bones.  It is great to see Zoe's muscles gain strength with her weight gain.  She is becoming so much stronger.  Keep it up Zoe!

Friday, April 22, 2016

Nothing Beats A Quickie!

The Things We do for Our Children When They Do Not Even Realize...

Ailsa loves dressing like "twinsies" with Zoe.  She loves to have Zoe wear the same colours as she is wearing.  And sometimes, she wants Gavin or I to do the same.  This morning Ailsa asked me to wear my yellow T-shirt when dropping her off at school.  Ailsa was dressed in black leggings and a yellow/ orange/ multi coloured shirt.  The only black leggings I have are fleece.  I usually wear them under pants in winter but ok, sure why not.  As for shirts- I only have one yellow shirt.  This particular shirt just happens to say,

"Nothing Beats A Quickie"

Nothing beats a what?  Why would I have a shirt like this?  Well, Quickie just happens to be the name of Zoe's wheelchair.  Hers is actually labeled as a Zippy.  I guess the smaller chairs just didn't seem right with Quickie written on it so they changed the smaller chairs to "Zippy" instead.  Two years ago at Easter Seals Mom's Camp (an amazing weekend away for moms who have children with physical disabilities) I was given this brightly coloured shirt.  Of course, they only had extra-small size by the time I pulled up to camp late.  So I have a very small, tight fitting, bright yellow T-shirt that says, "Nothing Beats a Quickie."  And this happens to be written in large, bold letters across my chest.  This is the shirt Ailsa would like me to wear while bringing her to school.

Why not?  I'll grab my light jacket and put it on top.  No problem, right?

No problem, except school is 1km (2/3 of a mile) away and I am sweaty by the time I jogged to school pushing Ailsa in the stroller the whole way while she read me her homework book (yes, I am teaching awesome homework habits already!)

I kept the jacket on while in the school yard.  Despite the sweat running down my back, I kept that jacket on.  I did not think typical parents would understand the joke on my shirt.  And I was pretty sure the moms would not appreciate me "flaunting myself."  So there I was, sweating and smiling and waiting for that damn bell to ring.

On the way home, I strip off the jacket.

So there I am, in tight fleece leggings and a very snug small T-shirt.  I've put on five pounds since I had a medical procedure in February.  Five pounds is not a lot of weight but after spending over a year working really hard to lose 35 pounds and finally, finally, finally being at the weight I felt comfortable at, putting on 5 pounds suddenly makes me slightly self-conscious.  And so, even if the yellow shirt did not proclaim to all the world that I love quickies, I would not walk around my neighbourhood in tight pants with an even tighter bright yellow T-shirt!

On the positive side, there were some young men doing construction in the street and one stopped, smiled and gave me a thumbs up as I passed.  So I can only assume he must know someone who also has a Quickie chair and understood my joke...

Monday, April 4, 2016

Happy Spring!

Oh what fun we are all having this Spring!  We have been busy going to the Women's Hockey game, fun farm, maple festivals and of course- Zoe's birthday.  These months have been so busy in good ways.  Our house is a complete mess but hey- we are having fun!

 One last snow picture- this is from this morning.  Ailsa loves when we toboggan to school.  Hopefully this is the last of the snow.

 We went to the Canadian National Women's Hockey game.  As usual, the girls loved being at a hockey game.

Zoe feeding a goat at a fun farm.  They had a bouncy house which was definitely a favourite.  Gavin or I went in with Zoe and Ailsa so that we could stand above Zoe to bounce her and guard against her getting stepped on- not that she would have minded!  Ailsa rode a pony for the first time.  She was so excited to be like her big sister, riding a horse.

 Zoe turned 9 in February!!!!  Ailsa planned a surprise party for Zoe at Boston Pizza, one of the girls favourite restaurants.  The biggest surprise was that Zoe was actually surprised.  Ailsa "whispered" about the plans for weeks. 

 Sadly, the day of Zoe's party was also the last day Michelle was here as our respite worker.  Michelle (a wonderful nurse that we have been lucky to have as part of our life) has moved to Windsor to live with family and work in a Detroit hospital.  Finding work in Toronto right now is tough with all the cut backs.  We are so excited for Michelle to start this next chapter of her life.  And we know we will continue to keep in touch with Michelle.  You can see in the picture how attached the girls are to her.  Michelle has been such a huge help to us all.  We will miss her!

We hope for more fun days.  It is so nice to be busy with fun things rather than just medical.  There are still plenty of medical things going on- some minor illnesses and multiple hospital visits.  I don't want to give the false impression that all is perfect here.  I think it is important to show the good with the bad.  My hope has always been to give hope to those families struggling with similar medical issues.
This picture here is a good example of a wonderful day that takes a lot of work.  Going out and about with Zoe takes a lot of preparation, time and energy.  I heard people say that we make it look easy.  I want to be sure to say to those of you who are doing the hard work and struggling at times just to get through the day, we know what that is like.  We are living it too.  We are lucky to get those lovely smiles from Zoe and Ailsa that make all the work worth it.  Living a life like this is difficult to explain to anyone who has not lived this way.  During spring break Zoe went to Emily's House for camp.  She had an amazing time.  In fact, she had so much fun she refused to come home on Friday and stayed an extra night!  During the week, we made a camp of sorts for Ailsa.  We went to Legoland, swimming a couple of times, skating, etc.  I hesitate to say it, but doing all this without Zoe was so much easier.  I do not feel guilt saying that- it is just a fact.  But I do feel sadness.  And after all these years, I still feel grief at times.  I grieve for the life we should have had.  I grieve for all the things Zoe misses out on.  And everything Ailsa misses too.  I carry that sadness and grief with me, always.  By the end of this day in the picture, Zoe's lower legs had turned blue and we ended up reviving her circulation for 40 minutes in the van with the heat blasted.  Times like that are very scary.  We begin to worry, should we treat Zoe more carefully, like the medically fragile child that she is?  But for us we know the answer is and hopefully always will be to give all of us as much life as possible.  We love doing things as a family and at times that makes activities more difficult but it is definitely worth it.  And some days, like this day, we even get a few cute pictures to share with all of you.

Saturday, February 6, 2016

Happy Holidays/ Here's to a New Year!

In lieu of sending out Holiday cards, I am putting a post on Zoe's blog.  How is this different from any other year?  The difference is that I deluded myself in to thinking I actually would send out holiday cards this year.  I even thought we would get a nice family photo done.  And while we are at it- why not pretend I would finally hang all the previous family photos and individual child photos on the wall?  All those school pictures waiting to be hung would be hanging in my perfectly clean house.

I know you are all shocked that this has not happened.  Even more shocking- it won't be happening any time soon.

As the year came to a close and a new year began, as usual I found myself taking stock of my life.  The highs and the lows of the previous year have been acknowledged, celebrated and in some cases grieved.

The biggest accomplishment that comes to mind about 2015 is that this was the first year in the past five years that no one in our family was in the ICU.  I was not told, "The next 24 hours are critical."  And I was not led to that horrible "quiet room" while a doctor with a sad face told me things no one should ever have to hear.

So I feel pretty good about how the year ended.  Because we are all here, together.  And we are all (mostly) healthy.

And maybe some day we will get another family photo done.  It will replace the last one we had which was taken one day before Gavin had meningitis.  In the photo, Gavin looks happy and healthy. Less than 24 hours later I was in that damn quiet room...

And some day my house will be more organised and life will always be perfect, blah, blah, blah.

For now, I celebrate where we are.  I am so grateful for how wonderful Zoe has been feeling.  In 2015, Zoe spent the first 9 months on morphine in and out of hospital.  Since September, Zoe has been doing so well.

Here we are- the start of another year and as always the hope that life will continue to be as good as this.

 Zoe's Holiday Concert

 Christmas morning

 Ailsa was as excited about Daddy's air hockey game as Gavin was.  And for the Scrubs fans out there- Oh yes, he is wearing a onesie!

 Christmas break this year was full of all the things Christmas break should be full of.  We chopped down our own Christmas tree at a tree farm.  We decorated a ginger bread house.  We went on outings like the zoo.  This photo is Zoe smiling up at the fish at the zoo.  Zoe's vision has matured/ improved in the past few months.  When we went to the zoo, Zoe was actually watching the animals for long periods of time and laughing at the silly things they did.  Zoe has always loved watching fish but is better able to track them with her eyes now.  

This is from a Marlies hockey game that Alison gave us tickets for.  Her brother had gotten the tickets for her nephews but they could not go to the game and he thought to give them to us since he knows the girls love hockey.  We were so touched by this gift.  All of the pictures of Zoe are super blurry from her moving so quickly with all her excitement.  Both girls have always loved going to hockey games.  I don't know if it is the lights, the music, or the food...  Both girls thought it was soooo funny when mommy kept chanting, "Let's go Flyers!"