Thursday, May 31, 2012

"Friends in Low Places"

Here's to Garth Brooks

Our friend Dorothy lent us a Garth Brooks CD.  Zoe is a HUGE country fan....Gavin and I are...not really big fans.  We accidentally discovered Zoe's love of country when we were driving in Utah after a 1p36 conference.  We rented a car and drove to see the Arches National Park.  It seemed that every station played country and when country was playing, Zoe was happy.  When a commercial came on, she would start crying again so we would find another country song.  Here in Toronto, we don't get so many country stations.  Just one to be exact.  And a new one which says it is country but often plays other music much to Zoe's dismay. 

Since Dorothy lent us this Garth Brooks CD, Zoe has wanted it to be played non-stop when in the car.  And so Garth gets stuck in my head.  And I wanted to do a post about some of our friends and how awesome they are and "Friends in Low Places" is currently playing over and over in my head driving me a bit mad!  And now anyone who has ever heard that song is now having it play in their heads too!

The hilarious thing about the Garth CD is that Zoe finds the rodeo song the most relaxing.  It is the song she often falls asleep too (something Zoe hardly ever did in the car- she would usually just get overtired and cry but that was before Garth!)  So forget those relaxing classical CDs I had been playing for her.  Forget the slow music- bring on the rodeo song:

Well it's bulls and blood
It's dust and mud
It's the roar of a Sunday crowd
It's the white in his knuckles
The gold in the buckle
He'll win the next go 'round
It's boots and chaps
It's cowboy hats
It's spurs and latigo
It's the ropes and the reins
And the joy and the pain
And they call the thing rodeo

And now that song will be stuck in my head for the rest of the day.  Well, I guess if I can't fall asleep I will sing myself this relaxing fast paced song.

We have been very fortunate to have so many supportive friends.  I am not sure if they are in low places....actually I am not really sure what that means exactly but I am pretty sure I don't really want to know!  It is amazing how touching a simple gesture can be.  Dorothy helped me bring the girls to visit Gavin in the hospital after surgery and she noticed Zoe calmed down when country was on the radio.  I explained that we do not have any country CDs and she immediately grabbed the Garth CD from her car as soon as we got back to the house.  That was so thoughtful of her....well I think it is thoughtful but Garth is kind of driving Gavin mad at the moment...too bad daddy- it isn't about what you want!

Relaxing Spa Day at Lyn's

Our friend Lyn invited us over so the kids could go swimming.  I asked our respite worker, Alison, to come along to help so Gavin and I could take it easy.  Alison showed up with breakfast and coffee.  When we got to Lyn's, Lyn and Alison took over with the kids and they were awesome.  Lyn cooked us a delicious lunch (during which time Ailsa was napping so I actually got to eat it!)  When both kids got up from their naps, Lyn and Alison took them swimming while Gavin and I slept.  After nap time, a nice hot shower with no one sitting on the floor babbling "ma ma ma ma ma ma ma ma" while I play peek-a-boo with the shower curtain to keep her entertained (this may have been my favourite part of the day).  Lyn cooked another delicious meal and then gave both Gavin and I spa treatments on our hands.  I think Lyn should open up a respite place for parents.  The entire day was so relaxing and felt like a real break from everything.  The girls had a great time.  Only downside is that I think we completely exhausted Alison and Lyn!  They seemed to struggle to get the girls to the pool (some excuse about multiple poopy diapers but you would think with two Early Childhood Education degrees between them they would be able to handle this!)  And Alison said that Ailsa exhausted her.  My angel?  I laughed and said, now imagine driving them home, getting them both ready for bed, give Zoe all her meds, nurse Ailsa and see what laundry needs to be done!  It was so nice to get away from all of that for a day and to be taken care of.

I love Zoe's look of pure joy while swimming with Lyn.  She had this smile the entire day when playing with Lyn.  And yes, Lyn, I promise to send you the photos!

Zoe passed out right on the rug after swimming.  She was tired!

Thank you to all of our friends.  You all rock!

Saturday, May 19, 2012

Glimpses of Light in This Long Dark Tunnel

Treading Water

Ever since Zoe was born, I've felt like we were treading water. After the first initial weeks of fearing that Zoe would not live, we received her diagnosis of 1p36. This was better than what we thought but not a hopeful diagnosis. The medical articles we were given were very negative and stated many things our baby would never do.

Still, we felt hopeful.

As time went on, we met other families who have children with 1p36.  This was great in many ways, a little overwhelming in others.  We glimpsed what the future could possibly hold.

And still, we felt hopeful.

As time passed, we realized that Zoe's disabilities were in the "severe" range.  We saw that some children with 1p36 walk, talk, feed themselves, etc.  We were hopeful that would be Zoe.  But it seems that Zoe is not one of those "lucky" children.  We love Zoe for exactly who she is.  And we are lucky that every day we see Zoe push herself and move forward.  Progress does not happen quickly and takes a lot of effort from all of us.  But still, we see Zoe gain new skills all the time.

So still, we feel hopeful.

Taking care of Zoe is physically draining.  But most of the time it is the emotional strain that gets harder and harder to cope with.  We struggle to get through the day, just to survive.

Here we are, treading water, watching other families on the shore making sandcastles with their kids.  Running around, splashing in the water.

It gets a bit lonely in the water.  Most of the other families treading are like us- too busy and exhausted to keep in touch much.  Just getting through the day takes all of our efforts.

But look closely.  There on the shore- a child sitting by himself, cramming sand into his mouth.  Practically choking on it.  Just like Zoe with sand.  Hey- if we get back on the shore for a visit we can chat with that family.  They'll understand if our only communication is postings on a blog.

Last year Zoe spent 196 days at the hospital.  How do we maintain any type of life for her, for us when over half of her year is spent staying at the hospital or waiting around all day in a clinic?

And yet still, we do actually feel hopeful...
Most of the time.


This is Zoe's blog so I won't comment too much on Gavin.  But his being sick has put a lot of strain/stress on all of us.  Physically, Gavin is just starting to take care of himself again.  For two months I have been physically caring for three dependent people, two of them with serious health needs.

Gavin's recovery will continue to take more time, perhaps months.  I am not sure how much more I will be able to do physically for my family.  I am sleep deprived.  Exhausted.  My muscles are sore.  And on a good day I get to eat three meals. 

And yet, I have to stay hopeful.
Because this is our life.  What else is there to do?

People in our lives have been incredible in showing support- dropping off meals, helping with the girls, staying with Gavin when I need to go to an appointment with Zoe, giving us gift certificates and money.  We are so incredibly grateful for this support.

And I guess that is why I have to stay hopeful.  Because there are good things and good people in our life.  And we enjoy the little moments- like time spent outside, seeing Zoe smile again, and celebrating a very important birthday!

Zoe loves the wagon, Ailsa still isn't so sure.  Gavin walked around the entire block himself while I pulled the girls!

Zoe's sign teacher says that Ailsa has "ASL eyebrows."  This is one of her favourite expressions at the moment.  Zoe is signing "Ailsa."

The girls got all dressed up for Ailsa's first birthday last Tuesday!!!  We had a wonderful party with just grandparents and us.  It was a beautiful day so we ate out on the back deck.  Ailsa was hilarious with the cake.  No smashing the cake like we expected, instead she carefully picked at it and ate the entire piece.  Zoe tasted her piece and signed "All done."  When I asked her what to do with her piece, she signed "Ailsa."  I don't want it- give it to my sister, she obviously loves cake!

Tuesday, May 1, 2012

Getting a Port

Thursday is the Big Day!

Zoe is scheduled to have a port inserted and minor eye surgery on Thursday. It is not great timing with Gavin still recovering, but we are all very eager to get this over and done with. We have known for some time now that Zoe needed a port but had to wait until she was well enough to put one in. A port is a small medical device that will be inserted under Zoe's skin in her chest area. It will make access to her vein significantly easier in the future. Given that Zoe has had some serious illnesses in the last year and they were not always able to access her veins, we are excited to get the port in. It will make things much easier on Zoe. They can give her fluids and take most blood tests from the port. So future hospitalizations should only involve the one poke to access the port.  This last hospitalization involved Zoe being poked by multiple people for almost 18 hours.  She even went to a procedure room so they could ultrasound and scan her veins while poking her but still were unable to get a line in her.  It was heartbreaking to see Zoe go through that.  And also extremely scary since Zoe was not doing well and needing a lot of oxygen at that point.  We were worried what would happen if Zoe got worse but thankfully she started to improve.

We are also very excited to get the eye surgery done since Zoe is having a very hard time with her dry eyes lately. We can see how uncomfortable she is and we worry about long term damage. Zoe had temporary tear duct plugs in the past that worked but they have fallen out. So now the surgeon is going to permanently close off at least two, possibly all four of Zoe's tear ducts. Zoe does not produce any tears and the moisture that her eyes create is currently being drained off by the ducts. So closing off the ducts will allow Zoe's eye to maintain a better level of moisture. We will still need to continue to administer tear gel four times a day after the surgery but hopefully Zoe will be more comfortable and better able to tolerate light. When your eyes are dry, you become more sensitive to the light.  And Zoe is already very sensitive to light so it makes it more difficult for her to enjoy being outdoors.

Gavin is hoping to be at the hospital with us before Zoe goes to sleep.  He will then head home and stay home while I stay with Zoe.  I have a schedule of helpers to be at the hospital with me so that I have someone to help with both the girls.  Since Ailsa is still nursing, she needs to stay close to me.  I think we will all be exhausted but glad that this is done with.  Zoe will be in hospital two or three nights, depending on how things go.

Is Excited the Word Here?

It is weird to say we are excited when really, we are very sad that Zoe needs a port.  We were hoping that Zoe would have a good year and not need this next step.  Zoe had a PICC line last summer and we were very hopeful that was a one time need.  Instead, we have found that Zoe has had several critical illnesses in the past 10 months.  But, here we are, we might as well embrace this next step and celebrate how it will make things easier and safer for Zoe.  So yeah, I am going to say we are excited but there are definitely some other emotions going on here...