Thursday, April 27, 2017

Yikes- we got a preteen!!!!

Dealing with Boys Already???

We finally got all the paperwork completed and funding in place for Zoe's new (and ridiculously expensive) walker.  All we needed was for Zoe to pick the colour.  Zoe went back and forth and would not commit to any one colour.  We thought, this is odd- Zoe usually knows exactly what she wants and says so right away.  Zoe rarely changes her mind once she has picked something.  So after many conversations it finally came out that Zoe seems to have a bit of a crush on a boy at school who has the same type of walker she is getting.  And she was thinking about getting the same colour as him instead of the colour she wanted.  I teasingly said, "What is he your boyfriend or something and you have to do everything the same" which Zoe quickly hit "Yes" on her talk program and was giggling and giggling.  What?????  I was just kidding.  My daughter is way too young to pick things based on what a boy might think!!!!

After all the giggles and blushes, we were able to talk to Zoe seriously about picking what she wants because if this boy likes her too, it is probably because she is herself.  So he would want her to pick what colour she wanted, not a colour just to make him happy.  OK, I don't know if this is true but if this boy stops liking Zoe because she picked a different colour than his walker, well then he is not worth her time!  And another thing- he is younger than Zoe!  She is looking a younger men already.  Man- we are so not ready for the teen years!

Communicating with a Non-verbal Person

I heard a story on the radio this morning about a young man (Hector) with autism in Texas.  To summarize- Hector loved going to his local blockbuster since a young age.  Employees at the store knew him well.  When the store got notice it was closing, an employee gave Hector's mom notice because they recognized what an impact this would have on Hector.  Employees and Hector's family worked together to create a mini-blockbuster in Hector's home to help him cope with the store closing.  What I find so touching about this story is that the employees recognized what this meant to Hector.  Hector is non-verbal and yet, he was able to clearly communicate with these employees for years.  They understood the significance this store had for Hector.  I love stories about non-verbal people who still reach out and touch other people in a different way.  If you want to read the full story, here is a link:

You will have to copy and paste since the blog does not want to make it a direct link.

Zoe, although non-verbal, communicates so much.  We are always grateful for the people who take that extra time to talk to Zoe.  Or even people who just see her big smile and smile back.  You don't need to speak sign language, or know how to use her talk program in order to communicate with Zoe.  Sometimes people get it and it makes Zoe so excited when someone talks to her rather than just around her.  Zoe is a very social person.  Sometimes people don't quite get it or question why we are advocating for certain things.  Zoe had surgery to replace the PORT in her chest (more on this in a moment).  We asked that Gavin be able to go in with Zoe until she fell asleep.  The doctor didn't really understand we were advocating for Zoe's sake, not our own.  He said things like, "Well it will be so quick and she seems pretty happy."  Yes, this may be true.  But despite her new maturity in picking out boyfriends for herself, Zoe is also just a kid.  A little girl who is scared to have surgery and wants her mom or dad there to help her relax as she falls asleep.  Although the doctor did not quite get it, he did allow Gavin to go in with Zoe.  So we were grateful.  Even though he did not seem to understand Zoe, he was still able to respect her wishes as told to him by us, her parents.

Zoe's PORT Surgery

Five years ago Zoe had a PORT inserted in to her chest.  The PORT is a device implanted just under the skin.  It is attached to a venous catheter which is a tube that goes into a vein in your chest and ends at your heart.  Zoe has very small veins and getting an IV in to her arms, hands, legs etc is extremely difficult.  The PORT has literally saved Zoe's life at times.  Usually PORTs only last a few years.  We have been very lucky with Zoe and hers lasted much longer.  We learned how to flush the PORT monthly with heparin at home so that Zoe does not need to get this done in the hospital.  This means she does not need to miss a day of school every month and also exposes her to less germs.  So perhaps this has also helped keep her PORT healthy.

Zoe was worried about the procedure.  She was nervous and said she felt scared.  We told her everything that would happen and made sure she understood what was going on.  Having Gavin go in with her when she fell asleep helped Zoe feel better.  Unfortunately, Zoe did have some complications which made her immediate recovery scary and uncomfortable for Zoe.  But as always, we stayed by Zoe's side and explained to her what was happening.

Zoe never had a problem getting anaesthesia before- she sedated well and woke up quickly.  This time, however, Zoe woke up choking and coughing up/vomiting bloody mucus.  She required a lot of oxygen and suctioning.  They were not sure at first why Zoe was having such a hard time.  Her recovery was complicated later by Zoe having a serious rash.  The rash started on her chest and quickly spread to her whole body.  The rash also caused facial swelling and so they were not sure if the trouble Zoe had breathing was due to an allergic reaction that was swelling her airway or from the anaesthesia issues.  It was very stressful because it took a while to figure out.  In the end, they determined that the airway issue was separate from the rash.  Zoe had a harder time with anaesthesia due to it being a long procedure (took 3 hrs) and her lungs which are worse now then the last time she got anaesthesia.  As for the rash- they are not sure what caused it.  They think Zoe's reaction was more of an immune system reaction then an allergic reaction.  She had been given so many medications during the procedure and then afterwards to help with her airway issue.  So they think Zoe's system just had enough and freaked out a little.

So what does this all mean?  Well, Zoe has an MRI next Friday so if this happens again, we need to do some serious investigating.  But if Zoe does fine, wakes up easily and has no rash, then we know the immune system response was responsible.  They are going to use a different contrast in case that irritated Zoe's system, the procedure will be much shorter, and Zoe has an overnight bed booked, just in case.

Getting Ready for Baby

Both girls are very excited about the baby coming soon- I am due in five weeks but who knows when this little one will decide to pop out.  Zoe loves lying against my stomach and feeling the baby kick her stomach.  She laughs and laughs.  Ailsa loves running up to me and slamming in to my belly to say hello to baby- little less comfortable than Zoe's snuggles but Ailsa always has been more firm in her affections.

 Selfies are always hilarious!

Ailsa set up a complicated game with many parts which primarily involved Zoe shoving Ailsa's doll down the slide for Ailsa to catch.  Zoe thought it was especially hilarious when the doll fell off the slide!  I love these games that Ailsa comes up with to play with Zoe.  Zoe is always a willing participant and just laughs even when it does not seem to make a lot of sense to the rest of us!

Thursday, March 16, 2017

Sisters, In Sickness and In Health

July 2011- Ailsa with Zoe in the emergency room just before Zoe was transferred to the Critical Care Unit.  Zoe was restless and settled down as soon as we put Ailsa in bed next to her.

Zoe's Birthday, February 2012- Zoe had another rough stay in the Critical Care Unit and was moved to the regular floor just before her birthday.  Zoe was pretty tired and not feeling great but as soon as we put Ailsa in bed next to her, Zoe smiled. 

March 6, 2017- Zoe had to return to the hospital and was readmitted for a bladder infection and needing oxygen again due to yet another viral illness (Zoe tested positive for two respiratory infections this time!)  In the emergency room, Ailsa had watched, held Zoe's hand and hugged her while she had a catheter inserted in her bladder and needles poked in her chest and arm.  Ailsa knew that Zoe would feel better if she hopped in bed with her after.  Ailsa climbed in bed with Zoe and she immediately started laughing and smiling.  I hope those laughs and smiles made both girls forget the pain.  

It never surprises me but continues to amaze me to see the close bond my girls have.  It breaks my heart when Ailsa cries and misses Zoe (and when Zoe misses Ailsa) but I am so glad that the girls continue to have such a great relationship despite age difference, disability, communication differences, illness, etc.  

Zoe is home now.  She spent the week at the hospital but has been home this week for March Break.  We were supposed to go away for part of the week but with Zoe just out of hospital and needing lots of rest, we decided to stay home and have a "staycation."  Although Zoe is having a lot of chest pain and needs extra sleep, we have still managed to go out and do some fun things- skating, going to a movie, puppet show at the library, etc.

Tuesday, February 21, 2017

Happy Birthday, Zoe!!!

10 years ago today I took on the most all consuming, scary and painful job I have ever had.

10 years ago today, I became a mom.

Zoe entered this world with a bang.  Or rather it was the total silence of her entrance that was so disturbing.  Grey and lifeless with a cord wrapped around her neck multiple times, Zoe unwillingly entered this world.  It had been three long days of attempting to be induced.  Attempting to get this baby out.  Attempting to push an unwilling Zoe in to this world.

And suddenly.


Here she is.

And here we are- 10 years later.

As I listen to the gurgle of the oxygen machine in this hospital room I can not help but think of all the days we have spent at this hospital.  And a few other hospitals.  I sit with these thoughts for a moment, but only briefly.

Mostly I think of all the other days Zoe has been a part of our lives.

I think of how silently Zoe entered this world.

How quietly.

How meekly.

And then I think of my Zoe- vibrant, full of life, rarely ever silent.  Yes, Zoe is non-verbal but she is not silent any more.

Her grunts and squawks are constant.

Her movement is constant.

Her curiosity is constant.

Her life is constant.

And if you have a child like Zoe you sometimes wonder how long this life might go on.

How long can she last?

How long can we last living this vibrant, scary, wonderful life?

None of us ever know how long.  And so doctors can make their guesses.  We can make our guesses. But in the end we only have this moment.

And in our case, we have had 10 years of these moments.

When I saw the lifeless and silent baby in that hospital room 10 years ago I did not think we would get so many moments.

10 years worth of moments.

A lifetime of Zoe.

Tuesday, January 17, 2017

Happy New Year!

2016 was a pretty good year.  Actually a great year for our family since it was the first time in 10 years that Zoe was not in hospital overnight!!!!!  And everyone else behaved themselves too.  Gavin has been back at work for some time now and doing really well.  Considering all that his body has been through we have been incredibly lucky and we still continue to see gains.  Ailsa continues to do well on her kidney medications.  Her disease is progressing more slowly than they originally predicted.  And I am doing pretty well too.

Sooooo, since life is going so well, we thought we would pick up the dice and give them another shake and take a big fat chance again:

The girls came up with a way that they wanted to share our good news.
 This photo was taken recently.

This photo shows what will happen around June 3rd!
To answer your questions- 
Yes, we are pregnant!!!!!  
No- it is not triplets.  
Just one happy active baby kicking around in there.
We are all very excited!

Other exciting happenings:

 Ailsa started hockey again in October.  She loves playing and Zoe loves watching her!

 We had two Bat Girls this Halloween.  Gavin did an awesome job turning Zoe's wheelchair in to the Batmobile.
 Grandma Sheena enjoyed tobogganing as much as the girls....ok maybe not as much as.  It's not easy walking back up that hill while pulling Zoe in the toboggan! 

Christmas Day- the girls were very excited to get the Canadian Girl dolls they had been asking for since September.  Both girls have been consistent in which doll they wanted, which outfits, etc.  Not surprisingly the hockey outfits (with all the gear including helmets and metal skates that can actually go on ice!) were first on the list.  The Canadian Girls have to travel everywhere with us and Ailsa loves saying we now have four girls in the family.  Thankfully we have enough seat belts in the van!

Zoe and Ailsa went cross country skiing for the first time during Christmas break.  We weren't able to get Zoe on the skis this time but she loved skiing with daddy.  In general, Zoe is not a big fan of cold weather but she does enjoy fast activities outside like tobogganing and now skiing.  

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.