Sunday, June 23, 2019

Best Trip Ever!

In May we went on a fantastic holiday as a family.  We drove down to Bayonne, New Jersey (across from New York city) and boarded a cruise ship for a 9 night/ 10 day cruise!!!!!  (It actually ended up being a 10 night, 11 day cruise because of a medical emergency on board). We had an amazing time and the Royal Caribbean staff were great.  When we were booking the staff was very helpful.  I explained that we needed a balcony due to Zoe's current medical needs and there might be days she can not really leave the room so she needs to be able to at least enjoy the sunshine and fresh air.  The woman gave us an amazing deal so we were able to stay in a Family suite with two bathrooms!  Most exciting is that the one bathroom had a full size tub which made bathing Zoe a lot safer.  Can you imagine holding Zoe upright in a small shower stall while soaping her?  Been there, done that and it is just getting too difficult now that she is so big.  The bath was great for the other girls as well.  When Willow was overexcited we threw her in the bath to calm her down before bed.  And the very first night I enjoyed a long soak with a nice glass of wine and a good book.

The staff on the ship were always very helpful and friendly.  Royal Caribbean has an Autism Friendly program (this includes any child with disabilities).  This meant Zoe could attend the play programs by herself and we were given a phone in case the staff had any concerns.  Zoe, being 12, should have been with the teen program but given her needs, we requested that she be in the same play group as Ailsa and the younger children.  They had no problem accommodating this request.  The staff in the play rooms were not the best staff ever.  Overall Gavin and I were not impressed with the programming (the toddlers mostly watched TV!).  And we were not happy that staff did not make more efforts to include Zoe in activities but we did recognize that there were sometimes over 20 kids with two adults!  So I don't think they were specifically neglecting Zoe, I think they just did not have enough staff or training.  It was nice to be able to get small breaks from the children so we could have some time to ourselves.  And Zoe was excited to go to the playroom even if she just sat in her chair and played with her own toys most of the time.

 We all really enjoyed the balcony.  All that fresh air and sunshine was amazing.

 A nice Canadian offered to take our picture while we were on a tour bus trip to see the island of St Maarten before going on our submersible boat trip.

Despite waking up with a high fever, hives all over her body and an obvious bladder infection, Zoe said she still wanted to go on the submersible boat tour we had been planning for months.  Since Zoe can not scuba dive, she was really excited to experience underwater in this special boat.  The divers fed the fish right by the windows so we could see the fish more closely.  Even when the divers weren't there, there was so much to see and the water was so clear and lovely.  We wish Zoe had been feeling better but as always, she pushed herself to enjoy the day.  And we came prepared so Zoe started antibiotics right away and was feeling better in a day or two...until her little sister gave her a gastro bug she picked up in the nursery.  We were glad the trip was a longer one so that despite all of us getting ill, we still had plenty of good days.  
 Of course an exciting trip is an excuse for mommy to buy matching dresses!  The girls loved dressing up for dinner.

The iFly was by far the best part of the cruise for both girls.  When I booked the cruise I spoke to the sales woman about the iFly and whether Zoe could do it too.  So many places use safety as an excuse to exclude people with disabilities.  She assured me that as long as Zoe did not have frail or brittle bones that might break easily then it should be no problem.  Still, I warned Zoe that when we got on the ship, the people running the iFly might say differently.  The woman who worked with us was amazing.  She was so respectful towards Zoe.  She asked relevant questions about Zoe's mobility and potential problems with bones or muscles.  She never asked "what is wrong with her" or even asked for a diagnosis since it was irrelevant.  She asked another staff to be on hand to help with Zoe just in case and she gave Zoe her full minute ride just like everyone else.  Zoe LOVED the iFly.  I am sure the feeling of flying felt amazing to Zoe.  She loves her freedom and anything involving movement.  The woman saw how much the girls loved it and encouraged us to come back another day toward the end of the cruise so we could have another turn.  Initially Ailsa was unsure about flying but she decided to go a second time and she really loved it.  I think knowing what to expect helped her enjoy the second time even more.

Another great part of the cruise was the day we spent at the beach.  It happened to be Ailsa's birthday and it was a perfect day.  The weather was awesome, the beach was beautiful, everyone was healthy and we had such an amazing time.  We walked the extra distance to get to the beach that was less popular so it was not so crowded.  We ate lunch right there at the beach.  Ailsa really enjoyed her special day.  I'm not sure we will ever be able to top that birthday!

So what's our next adventure?  In July we are camping for a week near Niagara Falls New York with two of my brothers, my sister and my cousin and their families.  It is going to be busy and loud so Zoe is very excited about that.  She loves how much noise my family makes!

After that, Zoe is having surgery on July 15th.  She will be in hospital at least a week and will take most of the summer to fully recover.  That is one of the reasons we really wanted to take a trip like the cruise.  Zoe's health is becoming a bit more complicated and unstable these days.  She has bowel issues which cause her a lot of pain and despite spending almost two hours every day giving Zoe enemas, she continues to have serious constipation to the point she has debilitating pain and she has not been gaining weight.  We think/ hope the surgery will solve the constipation which will get rid of her pain and hopefully make her able to better digest her food.  We also hope that solving her bowel issues will help decrease these persistent bladder infections Zoe is getting.  She has had four since March and one of them made her have a prolonged seizure which then caused other problems and necessitated a hospital stay.  Every time Zoe gets sick there is a cascade response in her body and sometimes the result is literally life threatening.  Her doctors were very supportive,  encouraged our trip and gave us emergency medications to travel with.  We researched the ship and knew it had an excellent health care facility and could handle an emergency but we were happy not to experience it for ourselves.  Although, I did get to see the doctor on board with Ailsa who ended up with a throat and ear infection.  As always, I was grateful for our travel insurance!

It was really nice seeing the girls have fun and just be kids.  Sometimes when Zoe is crying with pain, Ailsa sits beside her, reads to her and rubs her head (a habit she has continued since last year in the ICU).  Willow will frequently gather toys to give to Zoe in hopes that it will distract her.  Sometimes Willow crouches besides Zoe and pats her back while saying, "Zoe-oe-oe-oe."  It is such a sweet scene but it breaks my heart.  I loved seeing the girls playing at the beach or on the ship.  They are amazing sisters and I am glad they have these memories and photos to enjoy.

Monday, June 3, 2019

Where Have I Been?

There have been some really heavy things happening in our life and some really great things too.  It's difficult to sit down and write what is on my mind.  I don't want to make my posts too heavy, but I also don't want to pretend all is well.  I have heard from many parents that they appreciate my honesty.  My struggles have brought them hope because they see the struggle and then they see the joy that is still possible.

Ailsa, Ailsa, Ailsa

Ailsa is starting on a cholesterol 8 years old.  We knew this was coming, we have seen her numbers go up, up, up.  We knew this day would be here.

And still...

Still...spending 8 hours at the hospital today to confirm that she needs to start this medication now, right now, today has broken my heart.

Again and again my heart has been broken and I take it in stride, I really do try to.  But some blows really hurt and I just feel so helpless.

Ailsa has asked that I not share a lot about her health issues on Zoe's blog and so I have not.  I respect her privacy.  But it does tie my hands when I have so much I want to express.  And so, in deference to Ailsa I will keep it short and simple:

Ailsa's kidney disease is progressive.
She is doing way better then they thought she would.
She is doing way better then other children with her syndrome.
And still.
Still- her kidneys are failing slowly and eventually she will need a transplant.
As her kidneys fail slowly, they are not able to filter out certain things so it causes all sorts of other problems.
We knew this was going to happen when she was diagnosed but still... really fucking sucks and there is nothing I can do about it.

Ailsa does everything right- she eats well, she takes all her medications, she avoids the foods she is supposed to and still...

Still her cholesterol is twice that of a 400 pound person who smokes and drinks all the time.

And still her kidneys slowly fail.

Every appointment shows her numbers getting worse and more medication is added and Ailsa cries at the unfairness of it all.

And so today, my heart is broken but I decided to start blogging again.

We went on an amazing trip as a family recently and I want to post all about that, but first I had to get this off my chest.

Zoe is also struggling and will have a major surgery on July 15th but perhaps more on that another day.  For now, I needed to just start sharing again.

Zoe was upset last night because Ailsa had her appointment today.  She said she wanted to go with Ailsa, we explained why this could not happen.  So Zoe asked that we bring her special turtle (the one she bought with her own money during our amazing holiday last month) to the hospital today for Ailsa to hold on to.  She also reminded me to bring books and toys for Ailsa and to give her a hug (like I would forget!). Zoe is always looking out for her little sister, just like big sisters should.

And still...
Zoe is a 12 year old and reminded Ailsa that the turtle was not hers to keep- she has to give it back at the end of the day- that just made me laugh and laugh.

I love those girls.

With all my broken heart.

Friday, December 21, 2018

Merry Christmas!

We have had a good couple of months- full of the good kind of chaos.  Lots of fun things happening and not as many medical appointments/ problems.  Here is a look at the last few months.


We had a great time at the farm picking our own pumpkins.  The pumpkin patch this year had a bad crop so we ended up walking a great distance through many rotten pumpkins before finding what we wanted.  And of course, as always Zoe picked a GIANT pumpkin and as always, daddy agreed to carry it for her.  Zoe did amazing walking around in her Upsee walker.  The Upsee is great when there is uneven ground because a regular walker would not work.  We got a new harness for it and now that it is more comfortable for Zoe, she loves using it again.

It was a Harry Potter Halloween here- Zoe wanted to be Harry Potter and Ailsa was Hermione.  Both girls were super excited about the robes and wanted to wear them constantly.  Willow was a cute little butterfly.

Hockey, Hockey, Hockey

Ailsa started hockey again and of course everyone wants to go to every single game!  Zoe loves cheering Ailsa on but did get stressed when Ailsa was in goal.  Zoe was upset that pucks kept hitting Ailsa in the chest and head even though I reassured her that Ailsa was safe and not hurt.  She didn't like all those kids taking shots at Ailsa!  

 Coach Willow gives Ailsa last minute advice before her first game in net.

 Zoe laughing and smiling in the stands.  Go Ailsa, Go!

Zoe laughing and smiling at a Leafs game.  As you can see, when hockey is involved, the smiles just don't stop!  And if this was a video you would see Zoe waving and kicking the whole time.  It's not surprising she is tired after.
This game was a special invitation for Zoe and one parent (daddy went) from Coach Babcock.  Zoe got to meet the Leafs' coach before the game and then sit in seats donated by him.  I think the staff could see how much fun Zoe had at the game.

O Christmas Tree...

We were happy there was snow on the ground when we went to get our tree this year.  It always makes it feel more like Christmas.  As I type this, four days before Christmas, the snow has all melted and it has been raining!  But the girls did get to play a little in the snow at the beginning of the month.

 Zoe and Willow play in the snow while we pack the car.

As always, Zoe rolls in the snow and in general is less excited about the cold.  Willow in the background isn't quite sure what we are doing in middle of no where cutting down a tree.  And Ailsa is loving every minute of it.

 Zoe is not always a big fan of the cold, but she does love decorating the tree at home. Zoe is in her Kidwalk walker and doing an amazing job steering and using it, even in tight spaces. 

Again, I don't think Willow quite knew what to think about our crazy adventure and tree decorating.  But one thing was for sure- many of the ornaments were yummy!

And Now the Health Update for Those Who Want to Know

Zoe was having a lot of bowel issues in the Spring and Summer.  In order to deal with this, we had to start a daily bowel routine that takes about 90 minutes.  It has been an adjustment for all of us but Zoe has actually been doing amazing with it all.  And she is excited that she gets to poop on the potty every day.  She was able to do this occasionally before but now she is having success every day.  I won't get in to more details then that but if you are a parent whose child is struggling with chronic overflow diarrhea from constipation, I would be happy to chat more about what we are doing.  So far, it does seem to be working.  It took several months and one hospital stay to get it all sorted but we are seeing such a difference in Zoe- less pain, more energy, and a lot less blow out diaper changes.

Zoe continues to have immune system rashes every time she gets a virus or bacteria.  These rashes are so frustrating because Zoe already feels miserable, the last thing she needs is hives from her scalp to feet.  It usually takes about 48 hours to get the rash under control and it is very itchy and uncomfortable for Zoe during that time.  Sometimes her eyes swell up so much she can't open them.  We do have a plan that seems to help.  In the summer Zoe had to have IV steroids to bring the inflammation down but we have managed the last four rashes at home so that is some improvement.  

 Every month we are flushing Zoe's PORT which involves us shoving a needle in her chest.  Because getting germs in to the PORT and her bloodstream is not a good idea, we have to use a sterile technique when we do the procedure.  Here Willow is putting on her mask and "sterile" gloves to help out.

And this is Ailsa in November of 2013.  Perhaps we have two doctors or nurses on our hands?

Tuesday, September 25, 2018

Finally- Some Help

Because of a mix up (I still do not understand how it possibly happened and went on for weeks and weeks) Zoe did not receive any nursing support the entire summer.  Normally Zoe gets 15 hours of nursing a week.  This is arranged and paid for by CCAC (Community Care Access Centre).  When Zoe was home in between hospital visits, she was very ill and required a lot of monitoring, medication, care, etc.  I kept calling and begged for help.  Literally, I started calling twice a week and begged.  Finally, I asked the social worker and nurse practitioner for help.  They made some phone calls to the right people and all of a sudden- bam- lots of support in place.  We now have more hours/ support then we really need but we are taking everything they offer and will cut back once we have people trained and see who fits well and who doesn't.

The challenge of help- training people to take care of Zoe in the way that she wants to be cared for.  I feel like if Zoe could use her voice she would have a lot to say to these various care givers:

-Although I am petite, I am not a baby!  Please don't talk to me in a singsong baby voice!  I am 11 years old!

-I see you are worried that I roll around on the floor but that is the only way I can move my body completely independently without equipment or people.  I love to roll and scoot and play, please stop blocking me and taking away my freedom.

-You get upset that food falls out of my mouth when I am eating.  Guess what- get over it!  I have low muscle tone, food is going to fall out, I am going to get messy, and that is just the way it is.  I love food, so stop wiping my damn chin and feed me!

-You get upset that I put toys in my mouth.  This is a way that I interact with my world.  I get a lot of sensory input from putting things in my mouth.  In fact, if it was socially acceptable, I would love to lick and munch your face to get to know you better...

-You think I bit you when you were hugging me.  First off- did you ask for that hug because I don't remember you asking to touch my body in that way.  Second off- that was a kiss and you should be happy that I like you enough to give you some Zoe loving.

-Please stop preventing my baby sister from climbing all over me.  This is how we play and interact.  I am not so fragile that she is going to hurt me.  I love being a big sister, so please just let us be.

-And lastly, stop complaining that I am heavy to carry.  Perhaps you should get in better shape if you are going to help people in their homes.  NO- we do not have a hospital bed or lift.  Would you like to give us thousands of dollars to pay for those things?  I don't like listening to people always talking about how difficult I am to carry, feed, care for, etc.  Do you think I want to depend on you?  I am trying my best, so please try your best and shut the f%ck up!

Hmmm, perhaps I should post these on the wall by Zoe's extensive medication list.  I might want to change some of the wording though...

We are extremely grateful for any help that we get.  However, all this help just started last week after an extremely stressful summer with no support.  So Gavin and I are so exhausted from not having any help that we are probably less patient then we should be.  It is just hard to allow anyone to be around Zoe who does not see what an amazing person she is and who respects her immediately.  Yes, we will work with who we have and yes, they will get to know Zoe and hopefully change their interactions.  But really- I wish Zoe could use her voice to just say what she wants since us saying it for her frequently falls on deaf ears.

PS We are looking to hire a respite worker, so if you know anyone in the Toronto area please let us know.  We are the ones who hire the respite person so we are able to be more choosy and find someone who is a good fit.  We have been lucky in the past and had some wonderful people in our lives.  My friend Maria says, "The first thing I check is the attitude.  If it's not good, then goodbye!"  Sigh, if only we had more control in choosing the other people that come in to our home.

Monday, September 10, 2018

Where Did Summer Go?

It's hard to believe that it is September already.  The weather has turned chilly and wet, the girls are back at school, and we are left wondering, where did the summer go?

By the time Zoe got out of hospital there were only 22 days left before school began.  Of those 22 days, Zoe had appointments at the hospital 6 days.  So that only left 16 days to have fun and make summer memories.  I think we made pretty good use of those days!

6 Days at the Lake  
Zoe loved swimming and being outside.  She also really loved visiting Grandma!

This is Zoe's new lifejacket- it allows her to be completely independent in the water.  She loves it!

5 Days at Niagara Falls!

 This is us on the Hornblower cruise.  Zoe LOVED getting soaked.  Ailsa was not sure about it and Willow hated it!

 Our hotel was North of the falls (which is actually down river) in a ravine area.  So we got to walk along the ravine and see the rapids.  Zoe kept asking to go swimming- the 6 foot high waves did not bother her!

 The girls loved the Butterfly Conservatory.  They kept wanting a butterfly to land on them.
 Even Zoe kept still in hopes of a fluttering visitor.  She was not so impressed when a cricket landed on her chest and then jumped on her mouth!

1 Day for back to school shopping!

Both girls picked our their own outfits they were excited to wear the first day of school.  Zoe was pretty tired waiting for the bus but she was very excited once it arrived.

Zoe has been pretty tired from all illnesses and travel but is feeling much better.  The other day Zoe was having some pain and she made it clear that she did not want to snuggle with mommy, she wanted her sister.  So Ailsa suggested they sit on the couch and snuggle under a blanket while she read to Zoe.  Zoe fell asleep after 15 minutes but Ailsa kept on reading for an hour.  She said, "I know when Zoe is sleeping she is still kind of listening so I am going to keep reading."  After that, Ailsa watched TV while snuggled against Zoe.  Zoe just kept on sleeping.  

I love watching the girls have their own relationship completely independent of us.  I am so proud of Ailsa for being patient with her sister and not turning away from her pain.  Watching someone you love in pain is very difficult and I am glad Ailsa has found a way to cope with her feelings and remain present with Zoe.  She has found her own way to connect with and comfort Zoe. 

Sunday, August 12, 2018

Waiting to be Sprung

Today we are supposed to be at a cottage right next to a lake.
Today we should be playing in the sand and worrying about sunburn.
Today we should be swimming in the water (probably chilly despite this warm summer).
Today Zoe should be pulling on her new wetsuit that will keep her warm in the water.
Today Ailsa should be running in and out of the water and swimming on her own.
Today Willow should be crawling in and out of the water and definitely not swimming on her own.
Today all three girls should build a sand castle as we make sure Zoe doesn't put too much sand in her mouth.
Today we should be outside.
Today we should be on holiday.
Today we should be getting a break from the hospital.

Instead, I am packing up Willow and Ailsa to drive in to the hospital to see their sister.
Today we are discussing Zoe's current health situation with doctors.
Today we are worrying about what this all means.
Today is Zoe's fifth hospital stay since June 8th.
Today Zoe is uncomfortable.
Today Zoe is in pain.
Today I will hold Zoe as she bucks her body in pain.
Today I will comfort Zoe as much as I can.
Today I will comfort Ailsa as much as I can.
Today I will comfort Willow as much as I can.
Today my heart will break again and again.

As this day dawns we are hopeful that Zoe will be discharged from the hospital later this afternoon.
We feel like Zoe is a prisoner waiting to be sprung.
All of her doctors agree that Zoe needs a break from the hospital.
A break from the city.
A break from the pain.
A break.

But first we have to make sure Zoe is safe enough to travel the short driving distance of 90 minutes.
I hold my breath, awaiting their decision but doubting it with my heart.

Please- just give Zoe a break.

Zoe will have pain even while we are away but we hope that the sunshine and nature will help distract her from some of that pain.

Please- just give us all a break.

We need good summer memories.
We need to look back on this summer and remember something other then the fact that Zoe almost died twice.
We need to look back and have happy memories away from the hospital.
We need to look back and have any memories away from the hospital.

We just need a break.

Tuesday, July 17, 2018

Enjoying The Simple Things In Life

Unfortunately, Zoe has had a really hard month.  After being home less then two weeks, she had to return to the hospital for another bladder infection and a viral infection that gave her pneumonia.  She again needed more support with breathing this time.  She was able to be in the Intermediate Care Unit (a step down from the Critical Care Unit she was in last time) on a high flow oxygen machine.  She needed a lot of deep lung suctioning which was just miserable for her.  It involves a tube being shoved down her nose and in to her lungs.  As always, Zoe did amazing.  She is so strong.  Such a fighter.

Ailsa had a really hard time with this hospital stay.  She has a lot of fear about Zoe dying.  She does amazing expressing herself and asking questions.  It is heartbreaking to tell her the truth she already knows.  We don't know anything for sure, we don't have the answers but the truth is, yes- Zoe was a lot sicker these past two hospital stays and yes, it is possible for Zoe to get sick and not recover.  Yes, it is possible that Zoe could die.

Zoe also shares these fears in the moment when she can not breathe.  She was really scared this time. I think the memory of being intubated was fresh in her mind.  But Zoe seems to forget about that fear once she is home.  She is able to really live in and enjoy the moment.  We all strive to do the same.

Here are some pictures from our backyard when Zoe was home for those few days.  We have not been able to do much this summer, we haven't been able to travel far, but the time we do have we have enjoyed spending as a family.

 The playstructure from Million Dollar Smiles is still used almost daily when we are home.  You can see by the smile on Zoe's face, she still LOVES swinging.

 Willow is enjoying the slide.  Grandad, as always is willing to jump right in and play.  As Grandad ages, he has not been able to do as much of Zoe's medical care, but we are so glad he is here to just be Grandad.  The girls love spending time with him.

Happy July 1st!  The local park did not have fireworks this year so we had some in our own yard.  This was the first year Ailsa was able to be around and enjoy fireworks.  She loved the sparklers.  Zoe enjoyed them too but was having a hard day because she was getting sick again.

We also have a blow up pool in the backyard now that the girls are loving.  Zoe is able to use her new life vest float and swim on her own in the water.  Since the water is not very deep, she is more bum scooting swimming, but she loves it because she can do it all on her own.  We haven't managed to get any pictures of the girls in the water since its all hands on deck when all three of them are in the pool!