Cousins 2009

Edmonton, April 2009

Gavin's brother Colin's family and his cousins Katie and Fiona's families.

Katie was determined to fix Zoe's pigtails. She didn't realize how wiggly and unhelpful Zoe is until she already started.

Zoe is 26 months old.

Sarah Jane did such a nice job of supporting Zoe while she played.

Luke also did a great job supporting Zoe. It is amazing how quickly kids pick up on what Zoe needs in order to play with them.

Zoe still loves strings. Just look at that beautiful job Katie did with the pigtails!

Charlie is in the background.

Fiona and ? cousin (Fiona is pregnant).

Lucy shows Zoe how to use her turtle.

Zoe and Charlie in the wagon. It was very sunny that day.

Missing from the photos: Robert, John and Calvin.

Holyoke, MA May 2009

Clover and Zoe checking each other out. Zoe loved playing with Clover's hair. And her dogs.

Cousins 2008

Philadelphia, PA July 2008

Genevieve's brother Tom's family at Uncle Joe's wedding.

Kate and Ellen- I love how much Zoe's colouring matches theirs.

Zoe is 17 months old.

Missing from the photo- over 50 cousins from Genevieve's side. Genevieve was in the bridal party and Gavin was too busy taking care of Zoe to take pictures.

Toronto, July 2008

Genevieve's brother Tom's family comes for a visit.

Henry, Gavin, Kate, Grandma Sheena, and Ellen.

A day at the beach in Toronto.
Genevieve, Ellen, and Grandma Sheena.
Ellen was so helpful with her cousin Zoe. At this time, Zoe was unable to get the sand to her mouth but she kept trying to eat it. So Ellen was nice enough to grab Zoe's hand (full of sand)and shove it into her mouth for her!

Tom's family getting ready for their long drive home to Oregon.
From the top- George, Ellen, and Kate.

Cousins 2007

The Cousin Project

I was going to post some cute pictures of Zoe playing with her cousin Clover from our recent trip to Boston but then I had an idea. Why not posts pictures of the various cousins Zoe has met so far? There are many cousins on Genevieve's side and a few on Gavin's. We don't have pictures of all of them. But I will try to post what I can. My plan is to post years 2007, 2008, and 2009 today but I will see how long Zoe naps for. As always, she determines what I get to do with my day!

For simplicity sake, I am just going to say everyone in the photos is a cousin. Some people are first cousins, some seconds, others once removed, etc but it gets too confusing. Also, I will always list people from left to right. So here is Zoe with some of her cousins:

New Mexico, July 2007

Genevieve's brother Paul's family

Brian, Rachel, Tara, Jessica, and Sarah

Zoe is 5 months old.

Zoe and Tara

Zoe and Rachel. As many of you know, Zoe is a very wiggly child. Rachel had such a calming presence that Zoe often fell asleep in her lap.

Zoe and Brian. They kind of have the same expression in this picture.


Colorado, August 2007
Genevieve's brother Andy's family
Zoe and Jocelyn

Maggie, Aunt Sheri, and Andrew.
Missing from the photo: Faith.

Genevieve's brother Mike's family.
Aunt Bonnie, Francis, and Connie.
Missing from the photo: Michael, John, Sam, and Alex.


England, August 2007
Zoe is 6 months old.
These are Gavin's cousins from his dad's side.
Elaine and wee Zoe.

Zoe and wee Zoe.

Edmonton, Alberta, December 2007

Gavin's cousins Fiona and Katie's families

Zoe is 10 months old.

Lucy and Calvin.

Missing from the photo: Katie, John, Fiona, Luke and Charlie.

Denny's = Eat

Zoe is Brilliant

After a very long day in the car, we were looking for somewhere to eat. I was in the back playing with Zoe (typically she is ok by herself but she was tired and hungry by this point). Gavin mentioned that he had seen a Denny's restaurant a while back but he didn't see anything in the next few miles. I noticed that when Gavin said "Denny's" Zoe turned her head and was listening intently. Gavin continued talking about finding somewhere to eat and again mentioned Denny's. Zoe immediately smiled and signed "eat." I continued to watch Zoe, and every time Gavin said "Denny's," Zoe immediately signed "eat." We thought this was hilarious. And what a great sign of her cognitive understanding. Perhaps it is Zoe's American genes coming out. And perhaps this is a sad commentary on how much we have been on the road recently. We also noticed that if we said "Denny's" or "eat," Zoe would go from excited about eating to devastated that we weren't eating right away in about ten minutes. And so we learned the power of spelling in front of our child. We even have to spell "D-e-n-n-y" since she knows that is equal to eat!

The Other Sign that My Child is a Genius

After eating half of my pot of mussels (yes, she ate an entire half!), Zoe continued to eat her food when a "Great Big Sea" song came on the radio. Zoe immediately started laughing and smiling like she does when she is listening to music now. The funny thing was that this was not even a song that we usually listen to. It was a song from an album we don't even own so she could not have heard it more than once or twice but she must have recognized the band. As soon as the song ended, Zoe immediately signed "more" and looked at me. I explained that I could not control what song is on the radio. She got a little upset with this answer but was distracted by the rest of her food so all ended well.

And the Sign that my Child is Amazing

We visited with my cousin Elena and her family on our way to and from Boston. Elena has a beautiful daughter Clover (I should post some pics of them playing together- it was very cute). Clover was kind enough to share her jolly jumper with Zoe. Zoe has not been in her jumper recently and we noticed something very interesting. She kept trying to walk in the jumper. Which means Zoe would bear full weight on her legs, hold her trunk up, and actually take a step or two by herself before collapsing in the support of the jumper. Sometimes she even managed a few steps before she reached the end of the slack on the jumper and got pulled back and would swing back and forth while laughing her head off.

We had a great time in Boston this past weekend. It is amazing how much more relaxing travelling is when Zoe is well. And it is amazing how much better I feel when I actually get a full night's sleep. Imagine that!

And We Aren't the Only Ones Who Think She is Cute

Check out Zoe on the Ryerson site http://www.ryerson.ca/ece/index.html I love her hair in this photo!

Only One?

I have so much that I want to write on Zoe's blog but I just never find the time. So I am going to attempt two posts today. The first is much more personal but is something I have been thinking about for a while and came to light this past weekend. The second is just a fun post that is me bragging about my wonderful daughter.

So here goes.

The Big Question

Many people have asked this, I am sure even more have thought it, "are you going to have a second child soon?" We were at a work conference over the weekend in Boston and I saw many people I knew from university as well as my past job in Philadelphia. And so the big question was phrased in different ways. Here are some of the variety:
"Are you going to have more children?"
"When are you going to have more children?"
"Are you worried if you have another child it will turn out like Zoe?"
(My answer to this should be- by "like Zoe" I can only assume you mean wonderful and amazing?)
"Will you get amnio with your next child so you can make an informed choice?"
(And what is my "informed choice" whether to start an RESP or an RDSP?)
"Did you have amnio with Zoe? Did it pick up what she has? Will you know with the next one so you can be prepared?"
(How does one prepare for a wonderful child like Zoe? Should I stock up now on really bad movies to watch for the 16 hours a day it took to feed her which required me to sit in a rigid position and not make too much noise so she can nurse?)

Anyway, it gets me thinking.
About a lot of things.
People's perceptions of what a family should look like.
People's reasons for having children.
And overall people's understanding of what life with Zoe is like.

It used to hurt my feelings when people would ask these questions. How can you ask that? I felt like it would be as insensitive as asking at a funeral of your partner, "So, are you going to get remarried now?" How could we even consider having another child when clearly our world is still falling to pieces?

Now....now that life is more settled the question does not upset me. I realize people ask for a variety of reasons. And that people do not understand what life with Zoe is like just as I will never understand what anyone else's experience is. We have Zoe. They have their own families. Everyone is different. So how can you understand what it is like. Sometimes I attempt to tell people but I feel it undermines who Zoe truly is if I only focus on the difficult tasks. Sometimes it seems that it is easier to describe the hardships involved in parenting rather than the joys. The fact that Zoe is like taking care of a newborn- completely dependent on us for every single thing. Except more work than a newborn because we also have to provide developmentally appropriate opportunities to develop her cognitive abilities which seem to be her strength area right now (more on this in my second post). But if I only focus on what makes life more difficult, I would take the focus off what makes my life so amazing right now. And Zoe is an amazing child. She is so full of life. She laughs at the most random things. She notices things that other children are too busy running around to notice. And so we laugh with her. She is very clever in communicating in creative ways- you have to be when you can't use your words and you have so much to say. And so I can see why people would want me to have another wonderful child like Zoe (although I doubt this is what they are asking, I think for the most part people are wondering when we are going to have a "typical" kid. Not that they are saying there is anything wrong with Zoe, but people just assume that when you get pregnant you are going to have a healthy child. Who doesn't.....well we didn't but then again we aren't typical parents.)

And so here is my answer to all of those who are wondering:

No- we are not having another child any time soon.

Why? We have to look at what is best for our family and having another child is not what we believe to be best at this point. Zoe requires extra care that a typical parent can not even begin to imagine (our friend mentioned that her fist three typical children were less work (even having three young ones running around at the same time) than her one child who has 1P36). And so, having Zoe takes more time and energy than a typical kid. And so the fact is, we do not have any extra time or energy kicking around at this point. We do not want to compromise Zoe's growth by taking away from her care. (This is something people may not understand. As long you are an ok parent, your child will learn to eat, walk, play, etc on their own. With a 1P36 child, they need to be shown every single thing. Zoe did not even reach out to bat at toys until after 10 months of us showing her hand over hand over and over again. And so if we do not have the time to teach Zoe these basic life skills (walking, self feeding, toileting, etc) she will never learn them on her own.) And we do not want to compromise the sibling's own childhood either. The fact is we only have so much time and energy and these days it takes all we have to keep us going.

As parents, we have learned that it is no longer about what we want. Instead, it is about what is best for Zoe. What is best for our family. I love that Gavin sees this too and is willing to do whatever is best for all of us.

Does this mean I think anyone with a disabled child should not have more kids? Absolutely not. We see other 1P36 parents having more kids and that is great because it works for their families. But our family (like everyone else's) is unique. I have a chronic disease that until recently was well managed. I had surgery in 2005 and since then I have been managing my symptoms with acupuncture and taking care of myself. The taking care of myself part has fallen to the side in the last year. It is very challenging to take care of myself when I am in a hospital room with Zoe who is having a reaction to medication and is awake for four days straight in pain and agitated. How do I say, "Sucks to be you" and go home? And so I have a lot of pain symptoms right now. I finally agreed to start a medication recently in order to cope with the pain. I do not like taking meds (does this mean no one should take meds, NO! but I felt it was the best choice for me at the time). However, it got to the point where I could not even lift Zoe when I was having a bad day. With a child who can not move herself, not lifting her is not really an option. Add to this Gavin's own health concerns and of course Zoe's needs and the only solution (for now) is that we need to get on a steady ground before even considering having a second child.This doesn't mean not ever- but not now.

And so I will end my rambling here. Thank you for such interest in my reproductive intentions.

Zoe Works and Plays Hard

Zoe showing off her sitting skills while playing the drum that Uncle Colin, Aunt Krista, and cousins Sarah Jane and Robert gave her.

Zoe working hard in the stander while playing in the sandbox. Can you see why we do this activity outside?

Zoe painting a card for her great-grandfather Alec who is in the hospital right now. She is working hard in the stander again. The stander is great for getting her to stay in one place, work on building muscle tone, work on weightbearing, and puts her at a level she loves to be at to play.

Zoe's new ball pit! We noticed that Zoe always loved being in the ball pit at the special needs play group we brought her to. So, we decided to create one for home. She loves it.

And it is big enough for us to fit in it with her! Yes, Genevieve is falling asleep in the pit. You should try it some time- it is very relaxing to be covered in balls.

Update on Zoe's Lungs

Since a few people have asked (thank you for your thoughts) I just wanted to update everyone on what we were told about Zoe's lungs. When the doctors took a look at her older xrays (she had a few when she was first born and a few when she had pneumonia in Sept-Jan) it looks like Zoe's lungs have never really been "normal." She has always had a "haziness" in her lungs and they are not sure what exactly that is. At birth it was explained as due to her sucking in the amniotic fluid while in the uterus. When she had pneumonia it was explained as due to the infection. Now they are not sure if she has extra mucus causing the airways to get blocked which is why she has the atelectasis. Someone else mentioned bronchiectasis (http://en.wikipedia.org/wiki/Bronchiectasis) and this basically means that there is extra mucus plugging her airways. They don't know why there is this extra mucus. Their best guess is that she is either aspirating on her food or on her stomach acid when she gets reflux. So we are talking to the doctors about starting a reflux med. At the same time, we are waiting to hear about booking a feeding study as well as an upper GI test (http://www.medicinenet.com/upper_gi_series/article.htm).
Some of the other factors is that Zoe has an enlarged heart (she has always had this) and it is pushing on her left lower lung, making it difficult for the tissue to clear the secretions. Another factor is that Zoe had several chest infections this year, so that may be the cause of this extra mucus. We just have to wait and see if it clears up in time.
From what I know from other 1P36 parents, it sounds like many of our kids have these vague lung findings. So we do not expect to have an exact answer. It is a comfort in some ways to know other kids have been through this (for those of the kids that are doing well) but scary too (for those kids we know who aren't doing well).
I think I must be very tired (physically for sure but emotionally too right now) because it is almost like my brain is unwilling to process all of this until we know for sure what is going on. For now, Zoe looks great. Her lungs sound good (which gives me peace of mind) so we are hoping that she battled her last infection for this winter and we can move on and hope things clear up when she is well.
There are so many unknowns with Zoe that at times it can be overwhelming. The unknowns with her heart has caused us the greatest worry. Now we are a bit worried about the lungs (especially since it can put added pressure on her already stressed heart). But Zoe looks great. And we are planning a trip to Boston for work (we are told we can not fly right now but we were planning on driving anyway). So hopefully we will have a great trip next week.
The only other piece of advice we got was to carry our emergency plan, travel insurance, and NG supplies with us in case she gets sick. And from now on, we will be sure to watch her closely for signs of lung infection and bring her in right away.
So all in all- just another normal 1P36 day!

Zoe is turning orange

Zoe has really gone for the jarred baby food recently, which contain a lot of carrots (check the ingredients). We noticed her hands, face and feet turning orange and asked our pediatrician. Apparently this is called carotenemia (caused by excessive ingestion of carotenes, which are present in carrots, sweet potato and other green and leafy vegetables), is completely harmless and reverses when the carotene consumption declines. We used to make her all homemade baby foods, but awhile ago she decided she didn't like our as much and prefered the jarred stuff. So now her hands are orange, her feet are orange, her face is orange and her butt is orange (and, as we use cloth diapers, her diapers are orange). Not bright orange (except the diapers); just a nice healthy hue. It is more common in people of light skin tone, which Zoe certainly is. A few extra beta carotenes won't hurt her though. We thought of trying to change her diet, but really what is the point? As long she is healthy and enjoying her food we don't think this one is worth worrying about- we got enough going on as it is. So we just laugh and say that Zoe is going through her orange period, like Piccasso had his blue period. Zoe also had a grey period, when she was first born, and a blue period when she was showing a lot of cyanosis. Compared with these a little bit of orange is no problem.

Atel-ecta-what?

Zoe's Meeting with Complex Care Team

Zoe's pediatrician referred her to what is called the "complex care team." The goal of meeting with this team is to come up with a care plan for when Zoe is sick. That way if she goes to the emergency room, we already have a plan in place. And if she needs to be admitted, it will be the same group of doctors that will always be in charge of her care. That way they get to know her and provide more consistent care. Some of the other advantages are that if Zoe needs x-rays or tests at the hospital, we can get quicker results and the complex care team has six beds in the hospital so depending on if those beds are full, we may even be able to bypass the emergency room and get admitted right away. Because Zoe has been sick most of this winter, we thought it would be a good idea to meet with the team.

The meeting was what we expected but we did hear some things we did not want to hear.

Zoe's Lungs

For a while now, Zoe has been having some lung issues. Pneumonia that didn't clear up for months and now a junky sound and feel (you can actually feel the mucus if you hold her left side). Both the Nurse Practitioner (NP) and the doctor said what our pediatrician said- that this could be more of a chronic lung issue rather than a couple of different infections. We didn't really like this answer. They ordered a chest x-ray and the NP called last night to tell us the results.

Atelectasis and Aspiration

We were not surprised to hear that her lungs did not appear normal since she is sounding junky right now. We expected to hear that she had pneumonia again but instead we are told that the part of her left lower lobe that had pneumonia before now has atelectasis (http://en.wikipedia.org/wiki/Atelectasis) which the NP described as a "collapsing of the airways." Hmmm, that doesn't sound like a good time to me! So of course Gavin and I are now researching what this all means. The NP and doctor think that perhaps Zoe is aspirating on some of her food or her reflux and that is causing the lung issues. I asked what else it could be if it is not aspiration and was told, "I don't want to hypothesize on that just yet. Let's see what the test results show."

Of course through all of this, Zoe continues to look great and is quite happy. Her colour is great and she continues to have lots of energy. Today she is even at daycare with all her friends. We are so glad that Zoe is not suffering or uncomfortable but sometimes it is challenging to make our friends realize that Zoe is really sick. Yes, she looks great but her lungs look like crap!

Feeding Study

They want Zoe to get a feeding study (something that her pediatrician actually asked for 20 months ago but some how the paperwork got messed up and we ended up seeing nutrition instead). So we are waiting to hear from the hospital when they want us to come in for that. The initial feeding study will involve Zoe eating in front of an OT while she listens to her lungs with a stethoscope. If she hears anything or suspects aspiration, then she will order a feeding study with xrays.

Ending on a Positive Note

When we saw nutrition last week, they said they were quite impressed with how well Zoe eats. They are impressed with her variety in textures and tastes as well as how much she eats (she has turned into a real pig!) They also said that overall she is about the height and weight of a 14 month old (not bad since she is 26 months old). Her head is still quite small (about a 3 month old) but there isn't anything we can do about that. They also said that her body mass index is actually quite good as is her overall body fat. So we were happy to hear this. They don't want to see us for another year and said to "keep up the great work." It was nice to get the positive feedback after we have worked so hard the past 26 months to feed Zoe orally.