Thank You Katie!

Katie and Zoe reading a book.

Our friend "Auntie" Katie slept over last night so she could help us out today. First, she got up with Zoe when she woke up which meant Gavin and I got to stay in bed together! This is the very first time we have ever been able to sleep in like this. I, of course, did not sleep much but it was nice to lay in bed. Zoe has an EEG (electroencephalography is the measurement of electrical activity produced by the brain as recorded from electrodes placed on the scalp) scheduled for Tuesday to check for seizures. Zoe woke up with a coughing fit at 6am and then after that I was thinking about her appointment on Tuesday so I found it hard to relax and fall back to sleep. Not to mention I am just not used to sleeping in any more. After we rolled out of bed at 10am (can you imagine!), we went to the eye doctor (both of us needed to be seen) and then out for a relaxing lunch. We returned to a very happy child and a clean house. We are so grateful for Katie helping us out like this. Zoe has been sick for the past eight weeks so we have had a lot of doctors appointments and sleepless nights. So the extra rest and relaxation was wonderful. To say we are desperate for help right now would be an understatement. We do not have any family in the area so we are completely on our own and this is the first time we had help like this. As a bonus, Gavin and I realized on the way home from lunch that today is our anniversary. So, it is nice that we got to spend a nice day together as a couple.

Ongoing Support

We do have a respite worker, Riann, who is fantastic and comes for a few hours every week. Most of the time we end up using the time to run errands, clean the house, etc instead of respite time. But Riann is a lifesaver and she is great with Zoe.

The daycare that Zoe goes to two days a week is another source of ongoing support. They are absolutely fantastic with Zoe. It is wonderful to have people in Zoe's life like her teachers and Riann who know Zoe, understand who she is and appreciate what a wonderful child she is. It is a huge emotional support to be able to share all of Zoe's small milestones with her teachers and Riann and to see the excitement on their faces since they too have spent hours and hours, weeks and weeks working on these goals.

Another support has been my "personal assistant" Melissa who makes appointments for me to see students at fancy salons which means I get to get a fancy haircut for a cheap price while she watches Zoe. And then we go out to eat. We always say we will shop too, but by the time I get the haircut and Zoe eats most of the day is done. It has been a huge help getting my hair cut, especially recently since Zoe is now working on developing a pincer grasp. Since she isn't quite there yet, she is working on pinching things and grabbing on to hair. She is learning to be gentle but it not physically capable of letting go yet. So, I decided to get a shorter haircut which makes my hair harder for Zoe to grasp. We are letting Zoe grow her own hair out so she can pull on it and learn to release. It looks a bit shaggy, but we have cut the bangs so it is not in her eyes.

Long distance support comes to me by way of my friend Amanda. Amanda lives in Pittsburgh and since Zoe was born we have alternated her visiting us one month and then us going there the next. Amanda is a wonderful listener and always up for a random good time. I can never thank her enough for all of the Papa John's she has exported for my benefit. I don't think she has ever declared those at the border.....

Melanie, Amanda, and Genevieve on go carts at the pumpkin farm. Hey- those bikes aren't just for kids!

Gavin and Zoe having fun on the slide at the pumpkin farm. Zoe was just a little too small for the go-carts.

Zoe's Wish List

A few people have been asking for suggestions for Christmas gifts for Zoe. We thought it might be helpful to update people on where Zoe is at now developmentally so they know what type of toys she would be able to use and enjoy.
Zoe is doing really well and we are very proud of all of her milestones. She is now sitting for twenty seconds independently, rolling from her tummy to her back and her back to her sides, and able to stand with a lot of support. Zoe is now grasping toys and bringing them to her mouth to chew on. She enjoys wiggling around on the floor, rolling from side to side, and getting herself to her toys. Zoe's cognitive skills seem to be ahead of her motor skills as seen by her advance in communication skills such as the sign language and her understanding of cause and effect. It is a bit tricky to find toys that Zoe can physically play with that still keep her interested since she is now bored with baby toys that are easy to grasp. Here are a few ideas of some toys that would be easy for Zoe to manipulate but still keep her interest:
good old fashioned wood blocks- who doesn't love these?
Little Tikes tap-a-tune piano http://www.littletikes.com/toys/baby-tap-a-tune-piano.aspx
Little Tikes Discover Sounds Tool Box http://www.amazon.com/Little-Tikes-DiscoverSounds-Tool-Box/dp/B000067PUP
Tiny Love Activity Ball http://www.tinylove.com/toy.aspx?toyId=30
Tiny Love Bead and Blossom http://www.tinylove.com/toy.aspx?toyId=176
Signing Time Videos- we already have the Baby Signing time videos and Signing Time Vol one is a repeat, so any of the videos Volume two and past that would be great. Also, they have signing time board books http://www.signingtime.com/
There is a fiber optics therapy toy that Zoe really loves. It is called StarLight and can be found at http://www.flaghouse.ca/itemdy00.asp?T1=37656
Playskool Busy Basics Busy Poppin' Pals http://www.hasbro.com/playskool/default.cfm?page=browse&product_id=18095
Lamaze First Mirror http://www.liveandlearn.com/lamaze/firstmirror.html
We read to Zoe every day- so books are always great. Specifically, "And Tango Makes Three" is a cute book we read recently http://www.amazon.com/Tango-Makes-Three-Peter-Parnell/dp/0689878451
Clothes- any and all clothes are more than welcome since Zoe has outgrown most of her clothes recently. She is currently wearing size 18months (can you believe it!) so perhaps 24 months and up would be a good size. We do not look down on used clothes (or toys) so feel free to pass along your children's old cast offs or hit a thrift store.
We will be setting up a RDSP (Registered Disability Savings Plan) as soon as they are available for Zoe. We would love if anyone wants to help contribute to it (sorry contributions to Zoe's RDSP are not tax-deductible but the government does match some of the money you put in, so every dollar you put in is worth two or three dollars plus interest). Here is a link with more info: http://rdsp.wordpress.com/
Family gift idea- we really want to visit Edmonton next year but with Gavin stopping work in January, our funds are getting tighter. If anyone wants to donate towards airline tickets that would be wonderful.
All of the toys can be found at any toy store except the StarLight Therapy toy. Cheaper versions can sometimes be found elsewhere, but Zoe has torn out the fiber optic bands because they were not attached as firmly as the one from Flaghouse.
We hope that people find this list to be helpful. We are not, in any way, trying to tell you what to get Zoe (or saying that you need to get her a gift at all). We just recognize that buying a gift for Zoe is a little different than buying a gift for a typical almost 2 year old. All of the toys we put on this list have therapy goals in mind. With Zoe's visual impairment, it is important to use toys that are not overstimulating visually but are brightly colored and attract her attention. Just writing this list out was a little sad for me because I look at the toys I would get for a typical 2 year old and those are way beyond what Zoe can do right now. A close relative mentioned going into a toy store and seeing toys that Zoe would enjoy but noticing the age range on them and becoming sad and needing to leave the store. We know exactly how this feels.
But then we focus on the fact that this time last year Zoe was wearing 3 month size clothing and just starting to reach for toys. Now, she has such a good grip that we have to teach her to be gentle with our faces and hair. It is amazing how much she has grown in the last year.

More pumpkin fun

Zoe on her very first hayride with (from left to right) Melanie, Amanda, Gavin, and Genevieve.
Zoe showing off her pumpkin hand.

Zoe excited about playing with her pumpkin.

Zoe eats her very first food by herself! Zoe is now putting toys in her mouth and holding them there to chew on. She also fed herself grass and now pumpkin. We are looking forward to her eating more edible items soon.

Signing "More" and "Tired"

The quality of the video is a bit off but we are going to post them for now and then try to fix them later. Zoe's sign for "more" has become much clearer in the past few weeks and she is starting to get quite insistent when she wants more of something.

a smile and a stink eye- Halloween fun

Here is a quick video of Zoe enjoying carving her pumpkin at our friends Amanda's on the weekend. She loved it, and is soooo cute in this video (Zoe, that is-not Amanda)

I don't know what I did to deserve that stink eye, but Yikes! I love how expressive her face can be, going from that wide grin to that scowl in just seconds.

There will be more pumpkin/Halloween pictures to come- we just need to pick out the best ones. It's a hard choice- they are all super cute!

Zoe's great grandmother

Zoe's great Grandmother (Gavin's grandma) died this weekend, at the age of 91 (I think). She had been ill a long time, so it was not unexpected, and apparently she went peacefully in her sleep. She lived in Davidson's Mains in Edinburgh until she was around 77, in the same house my dad and two aunts grew up in. The first memory I have is from the garden of that house when I was two. For the last 14 years or so she lived with my aunt Muriel, uncle Walter and cousin Zoe in Surrey, England.

We were lucky enough to get over there last year with our Zoe (or wee Zoe, as she is known to that side of the family) last year. Zoe was 6 months old at the time. My grandmother was still in somewhat good health (though rapidly declining) and she enjoyed visiting with her great grandaughter (her "bonny wee babbitty") immensely. I can't say I knew my grandma well, owing mainly to the fact that Scotland is quite a long way away from Canada, but I am very glad that she was able to meet Zoe and that they could spend some time together. It meant a lot to everyone involved, I think (though Zoe looks a little mystified, to be quite honest).

This video is, I guess, my tribute to my Grandma. She was a spunky old lady- I think there can be no argument about that. She lived a grand old life, and I'll miss just knowing she is there. I'm posting this video in the hope my family can see it, and remember how happy Grandma was to see her "wee Zoe".

The music is "Flower of Scotland"- this version by a band called Runrig. The other lady in the video is my cousin Zoe, who is only a few months younger then I am and a charming young women who was also absolutely thrilled to see "wee Zoe".

Pictures from 2nd Annual 1P36 Conference in Boston, MA

Sequoya playing with Zoe's FP rings. These were a big hit at conference. It was interesting to see how the kids played with the rings. All of the kids insisted on putting the smallest ring on first and then stacking the bigger rings on top of it.

Amaya and Abby

Amaya and Emma

Nate, Melanie, and Whitney riding the T on the way to the aquarium. Whitney kept getting so excited, she would clap her hands.

Elisha, Sequoya, and Carl. Someone on the train recognized that our kids looked alike and asked us if we were going to a family reunion.

Kim and Amaya on the T. Amaya kept getting so excited she would flap her hands.

Genevieve and Zoe looking at the Jellies at the Boston Aquarium. Zoe did not pay much attention to most of the fish or the penguins since there was not a lot of contrasting colours. She did, however, love the jelly fish and kept trying to grab them.

These are just some of our many pictures taken this year at conference. We took some great footage of Zoe playing with the other kids, but unfortunately it turned out too dark since we took the video on our still camera. We are really glad we got to go again this year. We enjoyed seeing old friends as well as meeting new families. As I mentioned before, going to conference is a bit emotional since it brings forward the reality of what we will be facing with Zoe. However, the reality of the families we have met has been much less bleak than the reality we read in the articles when Zoe was first diagnosed. And we have learned so much from the other families on the list serve. So, we feel very lucky to have this support. If you want a run down of the conference speakers, check out Whitney's blog- the link is on the right. We look forward to going to conference again next year. We have decided that going to conference every year will be one of our family vacations. Although it is difficult at times to get that dose of reality at conference, it is so important for us to keep up with other families going through the same things as we are. There is such a bond between the 1P36 families since we are all in this together. We invite any of our family and friends to join us next year (or if you can't make it next year, you are always welcome) in Indianapolis the second weekend in August.