Thursday, September 23, 2021

An Amazing Summer!

We had an amazing summer this year.  In March we bought a 25 foot motorhome.  The motorhome is big enough to have three beds and a much needed bathroom but small enough to fit in to most campsites and is easy to maneuver.  We love camping and have a family tent that is big enough for all of us.  However, Zoe's bowel flush takes at least an hour and now that she is 14 years old, she needs her privacy.  (The "poop" tent idea was ok in theory but had it's issues when put in to practice two years ago).  So I began researching RVs.  For those of you looking at motorhomes, we only found a few models that had car seat anchors.  And only two models that had three point seat belts and car seat anchors.  I was very surprised that seats in motorhomes do not have to be certified because they put "positioning belts" in them, not certified seat belts.  So our search was quickly narrowed and luckily the model we wanted is a Canadian brand so that made finding and buying it a lot easier.  We were fortunate to find a 3 year old motorhome that didn't have too many kilometres on it and is in great shape.  

We spent over half the summer camping this year and it was awesome.  We went to 12 different provincial parks and one national park.  And we have a few trips planned for the fall before it gets too cold.  The RV has a propane heater and enclosed water pipes so we can camp comfortably in the fall and spring.  We could even try winter camping but it gets a little tricky because there wouldn't be anywhere to dump the water and waste tanks.  Also- Canadian winters can get very cold!  For now, I am very excited to be able to camp in spring and fall.  Because of Zoe's poor circulation she gets cold very easily so in the past we were only able to camp in July and August.  This year we started camping in April and haven't stopped yet!

One of the positive things about Gavin being ill was that he was off of work most of the summer.  Initially he was very tired and recovering but as he began to feel better but not yet approved to work we were able to go on some awesome trips.  We even went on a three week trip from home to the Thunder Bay area.

We couldn't believe there are such clear, blue-green lakes in Ontario!

Zoe loves swimming!  Zoe's poor circulation means she gets cold easily in the water but her wetsuit keeps her warm so she can swim for longer periods of time.  This life vest had been amazing for Zoe- she loves swimming independently. 

Zoe warming up in the sun while Ailsa and Gavin keep on swimming.

Our campsite at Sleeping Giant Provincial Park was amazing.  We stayed at a remote site that is across the lake from the main campgroup.  We had a large site right on the lake.  Our motorhome has solar panels to recharge the batteries so we do not need to stay sites with an electrical hook up.  We can stay in any type of site. 

We modified the hiking backpack so Zoe can still fit in it.  This is great for trails that are not wheelchair accessible.  We realized this year that we might have to stop carrying Zoe soon- she's half my weight now and her feet hit the back of my calves!

Ailsa had asked to visit the Terry Fox monument last year which is why I started planning this trip to Thunder Bay.  This stop was meaningful for our whole family but especially Gavin.  Terry Fox meant a lot to Gavin when he was an adolescent with cancer.  Gavin has how many miles Terry ran tattooed on his back.  After thinking he could never have children because of cancer, taking our family to see the monument was very special.

Pukaskwa National Park was beautiful.  They had some great accessible trails and beutiful beaches.

At a 1p36 conference years ago someone mentioned this blow up bed as a travel bed for children with special needs.  We would put Zoe on the floor when travelling so she would not roll off the bed.  But as she got stronger and rolled more this became a problem because we would find she had rolled under the bed, next to a heater or even in to the bathroom while we were sleeping.  This Intex "toddler travel bed" from Walmart has worked so well for us.  Zoe even uses it when she is in hospital- it fits the hospital beds perfectly.  And it just happens to fit the RV dinette bed perfectly too.  This prevents Zoe from rolling out of bed.  Thank you to whoever it was that told us about this bed!  We've learned such great advice just chatting with other parents.

Wednesday, June 9, 2021

Zoe Graduates 8th Grade!!!!

 Congratulations, Zoe- we are so proud of you!!!!!

Zoe was very excited to go to school for her ceremony.  We were not allowed to go but we had a live link so we could watch and cheer Zoe on.  Ailsa is still doing virtual school so she was able to watch with us.  Grandma Sheena was able to watch all the way from British Columbia!  And Grandad Alan was able to watch from his condo 5 mins away.  Zoe loved hearing their voices.  

Zoe was awarded the music award.  She was very proud of herself and kept talking/ vocalizing the entire time her teacher was talking about her.  It was pretty funny.  You can't keep that girl quiet when she has something to say.

Gavin had a major health scare recently and that was really hard (obviously!).  Covid restrictions made things even harder for their girls since they could not see daddy for three weeks. With Gavin being critically ill and the news that another one of the 1p36 children we hold close in our hearts has died, we really appreciate these moments of celebration.  It is so hard to believe Zoe is going to highschool next year!  There have been scary times when we didn't think she would make it to graduation but here she is- beautiful, strong and amazing.  And we are so very grateful for that.

Recently I read an article about Howie Mandel and his mental health struggles.  He said something that really resonated:
"I'm broken.  But this is my reality.  I know there is going to be darkness again- and I cherish every moment of light."

We have been so very lucky in this life to have Zoe and two other amazing girls.  And many bright moments of light.  

Friday, April 30, 2021

Oh no, more bad news from Gavin. Then some good.

Gavin here.  I had yet another health crisis recently- I had a major and totally random intestinal bleed and was in hospital for 20 days. I required 19 blood transfusions during this time.  And then it stopped, without identifying where the bleed actually was.  And through it all my wonderful, amazing wife kept everything going. I am recovering now- no more bleeding but still not at my best. That's the bad then the good- yet another random health scare followed by me recovering. And the the gitls are amazing. It was so hard on everyone, with the Covid restrictions (no visitors).  

The good- my amazing family, my wonderful wife. 

The bad- another instance of my body letting me down, and making me feel it just isn't cut out for living in this world. What random and rare medical condition will strike me next, and when?   

But in the meantime I can only marvel at how lucky I am to have the life and the family I do.  So lucky. 

Monday, November 30, 2020

15 Years!

 In November Gavin and I celebrated our 15 year anniversary.  15 years!  Wow, that time went by so fast.  I remember when Zoe was born I felt devastated.  We had left her at the hospital for the first time and I couldn't stop crying.  And after lying in bed for a while, Gavin fell asleep but I laid there wide awake.  And I remember feeling devastated, not just for Zoe but also for my marriage.  What was going to happen?  I thought, "Will we make it?"  Having a child with disabilities puts a tremendous strain on your marriage.  In our first year of marriage we had gotten pregnant (something we were told could not happen because of Gavin's cancer history), found out my immigration paperwork had gone through, moved to Canada and started new jobs.  There's a few major stressers right there!  In the second year of our marriage, Zoe was born.  Would Gavin be on the same page as me regarding Zoe?  How long before he takes off like many dads have done?  

Turns out that Gavin and I were definitely on the same page.  We made important choices in those first few days without even speaking about many things.  We just knew what Zoe needed and we knew that no matter the cost to us, we were going to give it to her.  Gavin supported me 1000% (yes, that's 1,000) on breastfeeding Zoe even though it involved a lot of extra work for both of us.  There were times when I was so tired from pumping and feeding Zoe that I could barely keep my eyes open.  Gavin would spoon feed me while I nursed our beautiful, wonderful daughter.  And he would take my pumped milk and put it down Zoe's feeding tube while I slept.  There have been many times Gavin and I worked in sync without much comment.  Many diaper changes on airplanes, appointments with doctors, taking care of each other and our children.  

Of course there were times when we weren't in sync.  Times that got really hard.  Times when commitment felt like a commitment.  But through all the years Gavin and I knew we could count on each other when it truly mattered.  We are truly partners and that is why we are still together after all this time.

We are so grateful for all the people who have helped us take the time we need to take care of our relationship.  We have been very lucky over the years to have amazing respite people and nurses.  However, if we did not have Gavin's dad Alan, we would not be able to go away every year for our anniversary.  Respite people and nurses come and go throughout the years but Alan's commitment to us, to our family and ensuring Gavin and I have time for eachother has never wavered.  

This year we rented a cottage in one of the provincial parks to celebrate.  We went away for three lovely nights.  The cottage was perfect- we had a kitchen to make our own meals, a lovely fireplace and a big bed for sleeping.  We did a lot of sleeping!  We also had time to go hiking which was loads of fun, we haven't done that in a while.  

I am so lucky that Gavin and I found eachother.  Without him, I wouldn't have any of this.  He is amazingly generous.  We joke that if there is something I want, even if Gavin is not on the sage page initially, it will happen.  (Like that camper he is going to buy me next year so we can camp and give Zoe privacy while doing her hour long MACE bowel flush...right?  We are buying that right?) He takes care of all of us time and time again.  Even after having his spinal cord tumour removed and getting meningitis not once, but twice (who does that?) he has gone back to work.  He puts all his energy toward taking care of our family.  And he is never boring- I have to say- that guy keeps me on my toes.  I don't think I've been bored a single day since I met him!

Happy Halloween!!!

Zoe wasn't feeling great on Halloween since she spent the night before in the emergency room.  Thankfully she did not need to be admitted so we could spend the day as a family.  Since we couldn't trick our treat this year we did a hunt in the back yard like we do at Easter.  The girls had a lot of fun and we were so grateful to celebrate Halloween together.

Ailsa wanted to be Anne of Green Gables this year and Zoe wanted to go as Diana (Anne's BFF).  They tried to convince Willow to go as Minnie May but alas, the butterfly costume won again!  In case you are thinking "Hey, that costume looks familiar" you are correct!  The butterfly costumes have been around since 2011 when Zoe was stuck at the hospital for Halloween and Zoe's amazing respite worker, Riann found two butterfly costumes last minute for the girls.  So we had one 3T size for Zoe and a baby size for Ailsa.  But the larger size has made a comeback several times in the past few years.

Ailsa in 2013.  She looks so much like Willow in the picture above!

The most exciting part of Halloween was riding down our very own wheelchair lift!!!!  The lift project is finally complete!  The driveway part of the project was finished just in time for Zoe to have a smooth ride to the back yard. 

Friday, November 27, 2020

Back to School!

 Yay, we are so excited that schools are open for in person learning.  We are lucky to live in Toronto where we get to choose in person or virtual learning.  After speaking with Zoe's doctors, Ailsa's nephrologist and the girls' pediatrician, we have decided to go with the in person decision.  We can switch to virtual learning later if circumstances change.  

The girls were so excited to shop on line for back to school outfits and show them off their first day.  Willow started pre-school and is excited to go to school like her big sisters.  

Willow says goodbye to Zoe from a "safe" distance.

Back to school is definitely looking different this year.

Thank you Camp Sunshine!
We had signed up for a family camp for children with kidney disease.  Ailsa was so excited to get to meet other children her age and to be the focus of a special needs camp instead of "just" the sibling.  Unfortunately, camp (like everything else) was cancelled this summer.  However, Camp Sunshine did a virtual camp in August.  It just happened that it was going on while Zoe was in hospital.  It was a great distraction for Ailsa and Willow at home.  And when Zoe was feeling up to it, she could join in from the hospital too!  Camp Sunshine is an amazing organization and we really look forward to going to the family camp next year and meeting all the wonderful volunteers and staff in person.

Ailsa and Willow made crafts at home and sent some of them to Zoe to decorate her room in hospital.

The girls all loved watching the virtual programs, especially the talent show.  A&W watched from home while Zoe FaceTimed with them and watched too.  Lots of giggles and smiles all around.

Thursday, November 26, 2020

Summer Time and the Livin's Easy.....Until it's Not

 Summer Time Fun

Happy July 1st Canada!

The zoo reopened and we went several times.

It's amazing how much fun the girls can have in a small pool!

We even managed to rent a cottage right on a lake and have some time away from the city.

Summer Time Not So Fun

Zoe had to have the PORT catheter in her chest replaced this August.  It was a planned surgery and all went well that day.  However, a few days after the PORT insertion Zoe became very ill.  She had picked up a bacteria while getting her new PORT and it had infiltrated her blood stream.  Zoe was very sick and had to have the new PORT removed a week after it went in.  The infection began to clear up once the PORT was out and Zoe was on strong IV antibiotics for several days.  Because of the seriousness of the infeciton Zoe had to be on the antibiotics for 14 days after the PORT came out.  During this time Gavin and I talked about the PORT- infection is a risk with having it, should we put another one in or wait and see?  It was hard to believe that a choice we made- Zoe having the PORT- had resulted in her being critically ill.  Zoe quickly told us what she needed- after a week on IV antibiotics with no PORT, her vein access got worse and worse.  She started going through a new IV (which took several attempts and sometimes several hours between attempts) every day.  Then she started needing a new IV every 12 hours...then after every dose of medication which was given every 8 hours.  Finally they could not get vein access at all so they had to start doing IM (intramuscular) injections which were painful and not as effective as medication in the vein.  So obviously, Zoe still had poor vein access and needed her PORT.  This was not a choice but a necessity for Zoe to receive the IV medications she will need when she is ill.  And so, for the third time in three weeks, Zoe went back to surgery to get a new PORT put in place.  She still had a bumpy road to recovery but the new PORT did not become infected and Zoe was finally off the antibiotics and able to come home.