Wednesday, July 29, 2009

We're Out of Here!

We decided to leave this afternoon (as opposed to driving all 960km/600mi tomorrow). We hope to drive a few hours today before stopping for the night. Hopefully we won't hit too much traffic heading out of town.

We'll be sure to take lots of pictures and post when we return. Have a good couple of weeks everyone!

Monday, July 27, 2009

Zoe's Tea Party

So far Zoe has raised $215 Canadian/ $198 U.S. !!!!!!!!!!

(I love that the Canadian dollar is doing so well since we are about to spend 2 1/2 weeks there- better exchange rate here we come!)

Thanks to everyone who has contributed so far!!!!!!!

If you still want to donate- don't worry, there is still plenty of time! Conference starts this Friday.

Don't have money this year? No worries- we will probably be running the fund raiser again next year.

Don't have money this year or next? Still no worries- if you are reading this blog, then you are already supporting a child with 1p36!

Thursday, July 23, 2009

Mom, Don't Embarrass Me in Front of My Friends!

Too Busy for Kisses!

I dropped Zoe off at daycare this morning (Zoe goes to "school" Thursdays and Fridays and absolutely LOVES it as this story will demonstrate). I put her in her walker (she has been practicing walking into the school room on her own like a big girl) and she took off into the room. I put her diapers, food, etc away. Zoe had walked over to three other kids who were looking at the fish tank. I said, "Mommy is going to work now, can I have a kiss?" The kids had started to walk to the toy shelf. Zoe shook her head "no," signed "all done" and quickly walked toward the kids. I walked after her, got down on her level and said, "Well, mommy wants a kiss. I am going to kiss you now because I am leaving for work." Zoe grunted, signed "all done" and again walked away.

Little bugger! I have to beg my own daughter for a kiss! I know all parents say they grow up so fast but seriously- what attitude!

I love it though.

I love Zoe's sense of independence she has gained with this walker.

I love her confidence that she can wave me off with an "all done" and know that I will return later where she will whine at me like "Mommmmm, you left me alllllll day!"

Maybe then I will remind her- "Hey, you were the one who was too cool to kiss me in the morning!"

Monday, July 20, 2009

Zoe is a menace- photographic proof!

Hey all,

I got a picture of Zoe's most recent mess today- it's the one Genevieve described in her previous post. One bowl of yogurt- why wouldn't I want it on the floor? Good thing we have hardwood floors and not carpet! : ) Look at her eying that other bowl (egg salad) thinking "hmm, how can I reach that one?" Glad she didn't grab the blue water glass- it was full!

We are amazed (and still getting used to, obviously) just how quick (and accurate) Zoe can be. It is an amazing development, and she (and us) have worked really hard to get here. We are so proud of our little menace!

Gotta go- someone needs a nap. Oh, and so does Zoe. Love to all.


Zoe's New Skill!!!!!

Zoe Sucking Her Fingers

After two and a half years of attempting to teach Zoe how to suck, Zoe suddenly started sucking her fingers last week! This is a very exciting milestone for 1P36 kids. First, it shows that her mouth muscles are getting stronger. And second, it means that she will start sucking her fingers instead of biting them. Zoe has been pretty good about the biting but does occasionally bite so hard that her fingers bleed and she has a sore. She does seem to be aware of how hard she can bite before hurting herself. She was very happy to discover this new sucking skill- she gave her finger a few big sucks and then smiled and signed, "More, mommy." I kept laughing and saying, "You are doing that, not mommy!" Funny enough, she seems to prefer sucking the same finger I used to suck as a kid.

Other New Skills

Zoe continues to amaze us with her development. She is now able to better control where she is going in her walker. She can aim through doorways and 90% of the time is dead on. If she hits a wall, she is now able to get herself unstuck. Zoe can also move herself on thin carpets. She surprised us by taking off in our room this past weekend.

Gavin just called me at work to report that while he was setting up lunch, Zoe thought it was a good idea to zoom over to the table and pull the bowl of yogurt down onto herself, her walker, and the floor. Apparently she thought this was hilarious! I can't believe Gavin didn't take pictures- we are so proud of the messes she can make now. It seems like not too long ago when Zoe couldn't even bat at things with her hands. Now she is such a menace and gets into everything!

Zoe also began splashing in the bath in the last few weeks. She purposely splashes with her hands and kicks her feet to "swim." She loves floating in the life vest we bought for her. We even let her take it in the bath so she can get used to it.

Upper GI Results

We did not get the formal results of Zoe's upper GI yet, but the doctor who did the test mentioned that Zoe definitely has reflux (no surprise to us), but the test did not show any aspiration. We were very glad to hear this news. It still does not give us an answer as to why she gets these lung infections and why she is still running a fever (I think we are on week six now). But we recognize that there are not always answers. Zoe's pediatrician is going to see how severe the reflux is and then decide if she will start on a medication. The reflux does not seem to bother Zoe, but I guess we have to be sure it is not damaging her esophagus or lungs.

Only Ten More Days Until Our Big Trip!

We are busy packing and getting the house ready for our big trip. I added up how many miles/km we will be driving total and it looks like we will travel at least 2000mi/3200km.

Our itinerary: We head to Indianapolis next Thursday. Then to St Louis to visit family the following Monday. We will be there for a week before heading to Kentucky to explore Mammoth Caves National Park. Then to Pittsburgh for a work conference where I am presenting. In all, we will be gone 18 days. We really look forward to the time we get to spend together as a family. It will be busy but as long as Zoe stays healthy, I think it will be a really fun trip.

Friday, July 17, 2009

Zoe's Tea- PayPal access

Thanks to our friends with the 1p36 Deletion Support and Awarenss group (in the process of being established) people who would like to donate to Zoe's Phantom Tea Party can do so using PayPal. Here are the steps

1) go to

2) fill out the donation amount, billing info (credit card or Pay Pal account) etc. Apparently there should be a box somewhere that allows for comments, in which you can type in "Zoe's Phantom Tea Party".

3) Send us an e-mail with your address (and, if you don't mind, the donation amount so we can keep track) so we will know where to send your tea for you to enjoy and something special from Zoe.

4) sit back and wait for the tea to arrive. When it does, add hot water, add your favorite tea additive like honey or lemon or milk or sugar or Scotch or whatever, relax and enjoy!

Thanks to all who have participated so far. You are all our favorite people, and thank you for supporting something so important to us.

Love, GGZ

Tuesday, July 14, 2009

Zoe's Fundraising Tea

In order to raise funds for the 1P36 Conference this year, we have decided to hold a "Phantom Tea." How it works is you donate any amount of money, we send you a tea bag and Thank You card from Zoe, and you drink the tea on the designated day. We decided to make August 1st the designated day since that is one of the conference days. That way you can feel connected to Zoe who will be playing with her 1P36 friends while you enjoy your yummy tea. The money will be used to pay for the speakers, room fees, etc at conference so the amount that the families have to pay will be less. This will be our third conference and so far we have found going to conference to be such a valuable experience. We get so much out of being around other people who know exactly what it is like to raise a child like Zoe.

Zoe is happy to recieve donations via our address. We are also working on a Paypal possibility, so we will let you know if that works out. At this point in time our groups paperwork for charitable organization status is still pending, so we don't think we are able to give tax receits yet (though we might be able to by years end, so we will try to do so by then if we can) Should you wish to donate to her tea please contact Zoe's mom or dad via our e-mail at

Thank you for any amount you are able to donate. No amount is ever too small. So here goes the cheesy poems meant to bring tears to the eyes and make you open your wallets :)


by Emily Perl Kingsley.c1987 All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go.

Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland.""Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

And if that didn't get you- here is another one:

What does it mean to be the parent of a child with a heart defect?By Anna Marie Jaworski (1996)

It means going into your baby's room a dozen times a night just to check and see if he is breathing. It means standing over the crib and watching for the chest to rise and fall and when you don't see it move you begin to panic and put your head down close to the baby's face to try to hear him breathe. It means that when you don't see the chest move and you don't hear the breathing (because your own heart's beating is drowning out any other sound in the room) you put your finger under the baby's nose to feel the warm air on your finger - until you wake the baby and he stirs - and you're thankful so thankful that he's still with you.

It means waking up with a start every morning, jumping out of bed and running to your baby's room wondering why he isn't crying yet?It means feeling a huge sense of relief when he hears you and opens his eyes and smiles, It means saying a prayer of thanks for another day.

It means measuring out his medication and panicking if he spits some of it out, How much did he spit out anyway? 1cc? 2 or 3? And wondering if you should guesstimate how much more he should have and worrying about overmedicating. It means checking his nailbeds against your own to determine how blue he is today, It means asking your husband, your mother, your sister, "Do his lips look blue to you?"

It means snuggling him in an extra blanket for fear he wont be warm enough. It means worrying that even a sniffle could cause an infection that would harm the heart. It means taking your baby to the doctor and then worrying that the baby will get something even worse from being in the waiting room, so it means walking back and forth and back and forth in the corridor until the nurse calls your baby's name and takes you straight back to the examination room.

I means knowing that everyday is a blessing and a gift, it means knowing that you are the luckiest person in the world just to be a parent, It means cherishing every moment, every breath with such an intensity that you feel tears come to your eyes for no apparent reason. It means praying for a miracle to save your baby's life.It means praying that your marriage is strong enough to endure the hospitalizations, separations, and the grief. It means your own heart knows a pain no parent should know. It means feeling weak and helpless and angry and depressed because your child's fate is out of your hands,

It means feeling strong and determined and brave because you know you have to be. It means your love knows new unlimited boundaries, it means your pride in your child's accomplishments is unparalleled, It means your pain has taught you a deeper sense of compassion and understanding than you ever imagined. It means we are united by the same feelings, it means that we all know the mixed up emotions of living with death-but more importantly of living with Life. It means that even though we are strangers … we are more to each other than friends could ever be

Wednesday, July 1, 2009

Zoe's New Haircut

New Haircut
When I was pregnant with Zoe, I had no idea I would gain so many titles with her birth. I have come to be known as Zoe's: Occupational Therapist, Physical Therapist, Speech Therapist, Respiratory Therapist, Doctor, Nurse, Equipment Specialist, Advocate, Personal Secretary, and of course- mom. Now I can add Hairdresser Extraordinaire to the list!

For some reason Zoe refused to look forward for the pictures. I guess she was too busy playing with her toy. I don't think I would have done such a good job (and her hair would not be as even) without my lovely hairdressing assistant- Gavin :)

Still Sick but Going Camping

Zoe continues to run a low grade fever and sleeps a little more than usual but other than that is doing great. So we have decided to go ahead with our planned camping trip this week. We leave tomorrow after daycare and will return on Sunday. We all look forward to getting a little rest and relaxation.

Happy Canada Day!!!!!

This is our first Canada Day in four years that we will not spend with our American friend Amanda, which makes us a bit sad. But we still plan to take it easy today. We have to pack and do laundry (not very exciting) but plan to fit a wagon ride around the block in there somewhere. Pretty exciting, huh?

Opps, I should say "Pretty exciting, eh?" (For those Americans reading this- "eh" is pronounced "aye" and Canadians say it after every sentence they speak). What's that aboot, eh?