Happy Holidays/ Here's to a New Year!

In lieu of sending out Holiday cards, I am putting a post on Zoe's blog.  How is this different from any other year?  The difference is that I deluded myself in to thinking I actually would send out holiday cards this year.  I even thought we would get a nice family photo done.  And while we are at it- why not pretend I would finally hang all the previous family photos and individual child photos on the wall?  All those school pictures waiting to be hung would be hanging in my perfectly clean house.

I know you are all shocked that this has not happened.  Even more shocking- it won't be happening any time soon.

As the year came to a close and a new year began, as usual I found myself taking stock of my life.  The highs and the lows of the previous year have been acknowledged, celebrated and in some cases grieved.

The biggest accomplishment that comes to mind about 2015 is that this was the first year in the past five years that no one in our family was in the ICU.  I was not told, "The next 24 hours are critical."  And I was not led to that horrible "quiet room" while a doctor with a sad face told me things no one should ever have to hear.

So I feel pretty good about how the year ended.  Because we are all here, together.  And we are all (mostly) healthy.

And maybe some day we will get another family photo done.  It will replace the last one we had which was taken one day before Gavin had meningitis.  In the photo, Gavin looks happy and healthy. Less than 24 hours later I was in that damn quiet room...

And some day my house will be more organised and life will always be perfect, blah, blah, blah.

For now, I celebrate where we are.  I am so grateful for how wonderful Zoe has been feeling.  In 2015, Zoe spent the first 9 months on morphine in and out of hospital.  Since September, Zoe has been doing so well.

Here we are- the start of another year and as always the hope that life will continue to be as good as this.

 Zoe's Holiday Concert

 Christmas morning

 Ailsa was as excited about Daddy's air hockey game as Gavin was.  And for the Scrubs fans out there- Oh yes, he is wearing a onesie!

 Christmas break this year was full of all the things Christmas break should be full of.  We chopped down our own Christmas tree at a tree farm.  We decorated a ginger bread house.  We went on outings like the zoo.  This photo is Zoe smiling up at the fish at the zoo.  Zoe's vision has matured/ improved in the past few months.  When we went to the zoo, Zoe was actually watching the animals for long periods of time and laughing at the silly things they did.  Zoe has always loved watching fish but is better able to track them with her eyes now.  

This is from a Marlies hockey game that Alison gave us tickets for.  Her brother had gotten the tickets for her nephews but they could not go to the game and he thought to give them to us since he knows the girls love hockey.  We were so touched by this gift.  All of the pictures of Zoe are super blurry from her moving so quickly with all her excitement.  Both girls have always loved going to hockey games.  I don't know if it is the lights, the music, or the food...  Both girls thought it was soooo funny when mommy kept chanting, "Let's go Flyers!"

Fun Month So Far

Zoe and Ailsa napping in the tent while camping Canada Day weekend. 

 Zoe loves the spinning strawberries at the local parking lot fun fair.

 Ailsa holds on to our gigantic cotton candy stick.  Zoe remembered cotton candy from previous experiences and refused to open her mouth (she does not like anything too sweet).  Ailsa was very excited to try cotton candy for the first time.  Alison (in the picture) came along to give us an extra set of hands...I think she just wanted to play too :)

 Ailsa, Zoe and Gavin sitting on a boat at the Easter Seals Regatta.  This is one of Easter Seals biggest fund raisers- people who want to enter their boat have to raise money.  They ask cute Easter Seals kids (like Zoe) to show up and ride around on rich people's boats and then go to a BBQ.  It was a fun day and as you can see- Zoe loves being on the boat.

 This picture cracks me up because it is so similar to a picture we took two years ago of Ailsa at the Regatta.  She looks totally comfortable and at home on the water.

 This was Zoe's expression the entire trip.  Watching Zoe is very rewarding for donors because they get to see what a great time she is having.

This little girl with Ailsa is a sibling of a child with special needs who rides at Hippotherapy right before Zoe.  They hit it off and had a great time playing together all day.  We hope to get together soon for a play date.  The child with special needs is very similar to Zoe and they enjoy seeing each other too.  We hope this is a relationship we can build for Ailsa- having a friend who also has a sibling with special needs would be great for her.  Gavin and I also seem to have some things in common with the parents.

Summer Already!

Wow, I can't believe it is summer time already!  Zoe's last day of school is Friday and we are going camping on Saturday- great way to kick off the summer and keep Zoe distracted from missing school too much.  My very pregnant friend Angela is going to camp with us.  She has an almost two year old who gets along great with Ailsa.  The two of them love hanging out.

Pictures From Last Couple of Months

Zoe and Ailsa were flower girls at Riann and Daine's wedding in February.  Riann was Zoe's first respite worker when she was a baby.  Riann went on to get a full time job but we are still close with her even though she does not work for us anymore.  Riann and Daine took care of Zoe while I was in labour with Ailsa.  Riann was the first person (besides us and the midwives) who got to hold Ailsa.  Daine was too afraid because she was only four hours old!

We are rolling our eggs down the hill on Easter.  Don't ask me why we do this- it is some crazy tradition in Gavin's family :)  The girls thought it was hilarious.  Alan was at the bottom of the hill catching the eggs before they could roll in to the street.  

Riding the zoo mobile.  Both girls love riding around and looking at all the animals.  Zoe had just gotten out of hospital from pneumonia so we were taking it easy and not doing too much walking.  Someone gave us a pass for the zoo as a Christmas gift and it has been well used- we are going every other week and sometimes twice in a weekend!

Playing in the ball pit at Zoe's school on family pizza night.  You can see Zoe's purple legs sticking out- she loves to bury herself.  As you can see, Ailsa is still a little cautious in the ball pit.  Zoe LOVES the ball pit.

Summer Plans

Zoe will go to camp the first two weeks in July and then we are all going to the 1p36 conference in Cincinnati, Ohio.  We are very excited!!!!  We have not been to a conference since 2010.  The conference has really grown since it started back in 2007.

After the conference we are going to drive to St Louis to see Gavin and my families.  I have four sisters, a brother, and many nieces and nephews in St Louis.  Gavin has a cousin with his family and his Aunt Patsy (who Zoe loves because she talks in a "funny" voice to her and knows sign language).  We are so excited to see everyone this summer.

Our road trip does not end there- we are then driving to Chicago to visit a family we met camping in Kentucky five years ago.  We bonded over the craziness of camping in 100 degree F weather and cave spelunking with your special needs child strapped to your chest.  This family has four beautiful children (at the time it was three) and one of the daughters has Down Syndrome.  We are excited to catch up and let our children play together.

By the time we get back from our big trip it will August.  We hope to do a camping trip in New York with my cousin and her family from Massachusetts.  And we will probably squeeze in another small camping trip closer to home if we can.

The Big Weigh In

The great news is that Zoe has grown 5cm/ 2 inches in the last year and continues to thrive and develop.  She amazes us with her persistence in learning new skills every day.  Zoe can now finger feed herself and hold on to her cup for long periods of time!!!!  This is big!!!!

Zoe feeding herself cake and whip cream at Gavin's Birthday dinner.  See how the whip cream is actually near her mouth now!!!!  She is so proud of herself.

Unfortunately, we have noticed that Zoe has not gained any weight in the last 2 years.  She has actually started to lose weight in the last few months, so she now weighs less than she did 2 years ago.  We have added calories to her food but it has not made a difference.  Zoe is not able to eat a lot when she is at school.  She does a great job and the teachers try their best but Zoe does not want to sit there for 45 mins and eat while the other children play.  Zoe has never felt hunger like most people do.  She could go all day without food and would not complain (she has done this for medical tests).  When she sees her friends playing after they gobbled down their lunches, she clamps her mouth shut until the teacher gives up and lets her play.  Zoe has also been very tired in the mornings, so sometimes we are only able to get a very small amount of food in to her before school.  Some mornings we can not get Zoe to eat anything at all.  Zoe eats great at dinner time- she loves eating as a family.  We all finish sooner than Zoe but we stay at the table talking about our day and enjoying the together time.  So dinner is not a problem.  But Zoe only eating one good meal a day is a problem.

Why Does Weight Matter?

At this point, Zoe has used up all her fat stores.  She has grown in height and has grown even skinnier.  You can see every rib bone, hip bones, spine, etc on Zoe now.  Her legs have also gotten very thin and Zoe is not able to build any new muscle.  The fact that she is starting to lose weight tells us that she is out of fat stores and her body is going in to starvation mode.  Having fat in your body is also necessary for brain growth and function, good energy levels, healthy immune system, etc the list goes on.

So Why Isn't Zoe Gaining Weight?

We believe that Zoe uses an extraordinary amount of calories every day.  She is constantly moving, wiggling, playing, rolling, etc.  Even in her chair, Zoe is still waving her arms and legs around.  She loves to move!  In the past, Zoe was able to get enough calories in to grow at a nice slow- paced Zoe rate.  She has always been small, but she was always gaining on her own curve.  At this point, Zoe is not able to get enough calories in to support any growth and is now unable to even maintain her weight.

Options

We talked to Zoe about various options- she DID NOT like the idea of the teacher pulling Zoe aside in a quiet area to help her concentrate on eating.  She DID NOT like the idea of going back to forced oral feeding we had to do when she was a baby.  Zoe loves eating and wants to continue eating but she is older now and wants to eat when she wants.  And she is stronger now so forcing her is almost impossible!

When we discussed the G-tube option (a tube inserted into the abdomen that delivers nutrition directly to the stomach) with the team, Zoe became quite excited.  She likes the idea of us using the tube to feed her when she is tired or too busy (Zoe's words- apparently she is too busy at school to eat).  Zoe will continue to eat with her mouth, the tube will be there to supplement/ give her more calories.  Zoe already gets nursing at school so this will not be a problem.  Having the tube will make it easier when Zoe is sick or dehydrated- currently we have to insert the NG tube in Zoe's nose and she is not a fan of the procedure.  Zoe had always been good about leaving the tube in place when she was younger but this last time, in April, she kept pulling the tube out.  She does not want it there.  The G-tube can be tucked away and not bother her.

Swimming and Baths

One of our big concerns was that Zoe would not be allowed to swim or take baths- Zoe loves water.  However, the team said Zoe will get a simple g-tube that is allowed to go in water once it has healed. So we are all happy about that.

We meet with the surgeon next Friday to find out when the tube insertion will happen.  We are hoping in August- that way it does not interfere with our trip and Zoe does not need to miss any school.  Because Zoe has been losing weight, they may not be willing to wait that long.  We will see.

Ailsa

Jeez, this is already a long post but I wanted to put an update about Ailsa.  I made this a long post because feeding issues, tube feeding, weight, etc are such a problem for 1p36 children.  I wanted to explain why we are getting the tube now so other families looking for info have it.  We have many posts on tricks for oral feeding (I feel like we could give a seminar at the conference!) so if anyone needs any info- just ask.

Ailsa has finally been given a diagnosis.  She has a problem with her kidneys that does not seem to be genetic or have any reason for being there.  At this point, we need to monitor her and she is taking medication to stop further kidney damage.  We do not know how things will progress but we do know this is a lifelong diagnosis and she will need monitoring and medication the rest of her life.

IT SUCKS!

That is about all I can say about that.  I hate watching Ailsa get poked or taking her medication.  I hate that she already has some kidney damage and it can get worse...much worse.  I hate not being in control!  (Yes, I like to pretend I have some control over this crazy life of mine!)

Having said that, we know how lucky Ailsa and we are.  She is doing wonderful right now so we focus on that.  That is all any of us have- this moment.

Can you tell therapy is working :)

We hope you all have a great summer and we will post lots of pictures of our crazy adventures.  We are very excited about everything we have planned.  And we know everything always goes according to plan...

I love this picture of Ailsa giving her baby medication while I am giving Zoe her night meds.  Ailsa has a very strange idea about what is normal but that is true for any of us.  All we know is our normal.  And our normal is pretty awesome....most of the time.

Snow Fun

We have been having very cold weather here in Canada- gee that is a surprise!  This past weekend we got some nice snow and the temperature was a little higher so we took the girls outside for some winter fun.

 Zoe is the purple blob with hearts.

 Wow, look at that BIG hill!

We've told Grandad that if he does not get enough exercise in his day it is not our fault, the girls give him a good workout any time he comes over!

Painting Fun

Gavin took the girls to the hardware store to pick out paint for their doors.  Ailsa went with a bright red and Zoe picked blue.  The girls are great at helping paint.  Unfortunately daddy seems to be slowing the process down because it took a long time for that first coat!

Little Walk-aholic

Walk, Walk, Walk

"Walk" is one of Zoe's favourite signs right now. She signs it constantly and gets frustrated when it is not time for walking (like bedtime). We love how much she loves to walk. We learned at our last developmental paediatrician visit that Zoe has subluxation in one of her hips. This basically means that the top of her thigh bone is loose in the hip socket because the socket is too shallow. This is not surprising since Zoe had hip dysplasia which caused bilateral displaced hips at birth. To treat this, we double diapered Zoe for the first year or so until the condition improved. Even now, we continue to do leg and hip stretches. We noticed that one of Zoe's legs appears longer than the other so we were not surprised when the xray said one of the hips has subluxation. The doctor recommended making sure Zoe gets lots of calcium and Vitamin D for healthy bone growth and that she do weight bearing exercises every day. We make sure Zoe gets two half hour sessions in her stander every day (she is sometimes in her stander longer at school when doing art activities- it is actually amazing how well she tolerates her stander) and we give her lots of walking time. It is a relief that Zoe enjoys walking when we know how much work it is for her. The other night she was falling asleep in her walker before bed and got angry when I took her out. She kept signing "walk, walk, walk" even with her eyes half shut! Now if we could only get her to enjoy those sitting exercises....

Little Negotiator

This conversation with Zoe took place a few weeks ago but I haven't had a chance to post it. Zoe has caught on to the skill of negotiating with us. First it was the typical, mom said no so I am going to ask dad. Now she attempts to make other suggestions and negotiate what she would like. Sometimes this is ok and what she asks for is reasonable- she wants to push the button on her toy one last time before walking to the dinner table. Other times, she tries to negotiate something she can't get out of. For example, I was putting Zoe to bed a few weeks ago and she signed that she either wasn't tired (I knew she was) or it wasn't time for bed (which it was). Our conversation/negotiations went something like this:

Zoe: "no sleep (or tired)"
Me: "Zoe it is time for bed."
"Eat" smile
Oh I see, you want to negotiate. Well, you had a really big dinner so no, it is not time for eating now.
"Milk" smile
You just had milk with your meds.
"Walk" big smile
Zoe, it is not time for walking. It is time for bed.
Sad face "Walk"
Zoe, I just said, it is not time for walking.
Frustrated grunt, hand slap, "Walk"
Zoe, are you trying to say that you have to walk to show me what it is you have to do right now instead of sleeping?
Big smile meaning yes
Hmmm, let me guess- do you need to play with puppy? (Puppy is a singing dog that Gavin rigged a big button switch to so Zoe can activate the dog herself)
Big smile "walk puppy"
No Zoe, as I said it is time for sleeping, not time for walking, and definitely not time for playing with puppy.
"no sleep" pause "swim" big smile
Are you trying to tell me that you can't go to bed because you have to swim?
Big smile "swim"
Ok, negotiations are over, you are just being silly now.

Halloween fun

Happy Halloween everyone!

Hope you enjoyed Halloween as much as Zoe did this year. Here's a video of some of our Halloween fun.

What's New?

New Glasses

Zoe's glasses were lost two weeks ago at school. Her teachers are always very responsible with her glasses and other equipment and felt terrible about them falling out of a side pocket of a bag when they were on their walk. I think they were more upset then we were! So we ordered new glasses and they came in on Friday. We were so happy to see Zoe in glasses again. What a difference it makes in her looking and focusing now. As soon as the new glasses were on, Zoe just kept looking and looking at everything. When we got home, we put her in the walker and Zoe just took off and kept laughing and smiling like she was saying, "Hey, I can see everything again!" We were looking at replacing the old glasses soon anyway since they were starting to press on her temples. And this time we got transition lenses so Zoe can see better outside. So far we are very happy and so is Zoe. She keeps signing "Zoe happy."

Zoe posing for the camera in her new glasses.

Zoe's New Big Girl Role

Now that Zoe is a big girl and goes to preschool, she is starting to have jobs around the house. Currently, it is Zoe's job to feed the fish, oversea daddy cleaning the fish tank, turn off the light in her room, and sometimes Zoe will help us with preparing dinner.

Zoe helping Daddy clean the fish tank.

Zoe helping make pizza.....



....sometimes throwing the cheese on the floor is more fun than putting it on the pizza!

Zoe's New Fish

Zoe adopted Brittany, the fish from school. After rearranging the classrooms this summer, Brittany no longer had a safe place to live. We were very excited to take her home. Zoe knows that Brittany is her fish and therefore, she has to take very good care of her. Gavin was just a little bit excited about having a second fish tank!

Zoe showing Brittany her rolling toy.

New Look for the Pony and New Walking Style

We used to use a basket on Zoe's pony with a toy in it as a way to motivate Zoe to walk. Lately, she became so interested in the toy that she would just stand there and play with it. So we have taken off the handle bars and basket so the pony is open in the front. Now, Zoe is able to get right up to tables, chairs, etc to reach things better. And she can see where she is going so she is not distracted from walking. We have noticed big changes in Zoe's walking style. She used to walk just for walking sake and just run around when in an open area. Which is typical of kids when they are first walking. Now, like an older child, Zoe will take off and run over to a toy or something she wants to play with but does not do a whole lot of walking for walking sake. She now expects to walk to get where she can play. We have set up different areas of the house for her to explore and play in. School has done a really great job with this as well.

The other way her walking style has changed is that her coordination has really come along. Zoe now gets a full gait going with opposite arm swinging at the same time her leg is moving forward. It is very exciting to see this development. Zoe can now back up and move away from things when she is stuck. Every now and then she gets really stuck and will squawk for help, but mostly she is very independent (and has to be watched or she will really take off!).

Zoe playing with her pom pom outside of her "bat girl" cave.


Zoe stopping to play with one of her favourite toys while walking around the living room.



And despite us putting up all sorts of fun sensory play stations and toys throughout the house, Zoe's favourite place to go is still the bathroom! Crazy girl! She now has the coordination to turn herself and go into the bathroom very easily and loves to just hang out in there signing "more." More what? More toilets? Who knows! You can see her signing more in this picture.

New Signs

School has been great about working on lots of new signs with Zoe. We are continuing to work on signs at home too. Zoe is working on her animals right now and names for objects in her classroom. I have been working on feeling words and Zoe is doing an amazing job communicating. Something I did not teach her but she has started doing herself is to add "mommy" or "daddy" to her feeling sign to let us know which one of us is making her angry or sad. And she will label our mood too by signing "daddy tired." She is also doing a great job of vocalizing to get our attention and then signing. We joke now because she has become so vocal that we feel like she just yells at us all day long! She is not always patient but it is so great to see how much she is able to communicate despite her being "non-verbal."

New School Schedule

Now that Zoe is in Preschool, we decided to increase her days at school to three days a week. Zoe now goes to school Monday, Thursday, and Friday. Three days in a row were too much for her, she would just be exhausted by Friday and not get much out of it. This way she has some time to rest in between but is never away from school more than two days. Zoe continues to LOVE school. This past Monday I woke Zoe up to get her ready for school. She kept repeatedly signing she was tired. The conversation went something like this:

Zoe signs: mommy

Mommy says: Yes, Zoe?

Tired

Yes, Zoe. I know you are tired but it is time to get up.

Mommy

Yes, Zoe?

Tired

Yes, Zoe. I know you are tired but it is time to get up.

Mommy......

and it repeats itself until Zoe hears Gavin in the kitchen. She then applies to daddy for help.

Daddy

Yes, Zoe. Daddy is in the kitchen.

Tired

Yes, I know you are tired.

Daddy

Yes, Zoe. Daddy is right there.

Tired

Ok Zoe, I will tell Daddy you are tired.

Daddy- Zoe wants you to know that she is tired.

Daddy says: Ok Zoe, I know you are tired but it is time to get up.

Mommy......

and on it continues until I answer with

Zoe I know you are tired but it is time to get up for school.

suddenly Zoe's hand stops in midair from signing "tired" and grasps the other hand in a "school" sign while a big smile spreads on her face.

School

Yes, Zoe you are going to school. That is why I woke you up.

School (signed while laughing and smiling)

Gee Zoe, I thought you were tired.

Shakes her head no and then signs "Zoe school"

Well I am glad that you suddenly got so much energy for school.

School

Yes, Zoe you are going to school

Zoe School

(Sigh) Yes Zoe, you are going to school

Zoe School.....

and you can imagine this continues for some time!

New Physio Schedule

At this point, we are able to back off from doing so many physio exercises and able to let Zoe run around the house and play to get her exercise. For a long time, we had to teach Zoe to put her feet on the ground. Now, she loves to walk and stand. So we are working on building her endurance and this is best done by letting her walk as much as possible. We take her over to Variety Village (a great wheelchair accessible facility with big smooth hallways and a heated pool) and just let her wander the halls. It is also great to see how many people know her. Many have commented on her not having her glasses the last few weeks. It is nice to have this sense of building a community that is getting to know Zoe. Some people I don't even know but they will say, "Hi Zoe" so I guess they know her!

Zoe also loves being in her stander and will stay there for up to an hour as long as she has something to play with. She LOVES playing in the sandbox or water table at school.

We do still have to do some arm strengthening/ compressions to get Zoe to put her hands out. She continues to put her arms down at her sides rather than use her arms to push up or brace herself when falling from a seated position. Just like with her legs, we have to program Zoe's brain to do what other kids do instinctively. We also continue to stretch her hips and hamstrings which continue to be very tight.

As always, Zoe continues to be very motivated to grow and build muscle tone. She does a great job rolling her toy back and forth to build shoulder strength, pushing buttons to build fine motor, etc. She is even building the muscle tone on her right side without us needing to prompt her to use that arm and hand. This is different than showing a preference for one hand or the other since it is a weakness in one side rather than a preference in the other. We used to have to prompt her a lot to use that right side, but she is now doing it herself. It is so nice to be at a place where therapy is becoming more play based and less funky exercises that make her scream!

New Health Routine for Genevieve

I am continuing to have some health issues this year. In 2005 I had an endometrinoma removed from my left ovary. At the time of surgery, the doctor also removed several more endometrial growths from my pelvic cavity. Since surgery, I have done well maintaining my health by eating well, getting lots of sleep, and acupuncture. As you can imagine, finding time for these things has been challenging since Zoe was born.

My doctor gave me a stern warning lately and I have missed quite a bit of work so it has been a real wake up call. My symptoms are much worse lately and interfering with my life. So I have recommitted myself to taking better care of myself, building my own muscle tone (how else am I going to be able to lift Zoe in the next few years as she gains weight?!), and getting back to acupuncture. My symptoms are such to suggest I may need more surgery but I have decided to hold off on that option for the moment. Surgery is not a cure for endometriosis and can actually cause more growths on the scar tissue left behind. Unless I am in danger (like last time- the cyst got so big that if it erupted on its own I could have lost an ovary and gotten very septic) I am opting out of surgery for now. Acupuncture has proven to be very effective in treating symptoms. I just haven't been good about going on a regular basis. I also started a hormone last April to help with pain and I am happy to report that the pain is getting much much much better. In April, the pain had gotten so bad I could not lift Zoe but would drag her from room to room on a towel (she actually enjoyed this!).

I think it is a combination of not being in chronic pain and Zoe doing so well that I am feeling much better mood wise. I feel like a new mom in some ways. There are days when I know I should sleep in (like yesterday- Gavin was home and got up with Zoe but I heard then giggling so I HAD to get up and see what they were up to) but I just want to gaze at Zoe all day long. She is so beautiful and I just love watching her eyes light up as she cruises the house and discovers something she can play with. I love hearing her "yell" at us. I even love when she is mad at me because I say it is time for bed and she signs "mommy" and "angry" with a very angry looking face so I know that she is mad at me! She has such a great sense of humour and I miss her so much during the week when I am at work that is is hard to take any time for myself to sleep on weekends.

So for now I am committed to taking better care of myself (something women in general are not encouraged to do in our society or my family). And I am really enjoying watching my beautiful and wonderful daughter play with my gorgeous and wonderful husband. They both make me feel like I am the luckiest mom/wife in the world.

After posing for the first picture on this page, Zoe giggled and signed "all done" like she was saying, "Please, please no more photos right now..."



Then she got serious- "all done" aka "look, I mean it, no more photos right now!"

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!"

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.


GGZ

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.

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.

Zoe's New Wagon

Zoe having a ride while signing "mommy" meaning "mommy- go faster- I want more bumps!"

This weekend we went to Hamilton to buy Zoe a wagon- it is a very fancy wagon as you can see from the picture with pads and a canopy (it also has a rain/wind cover and sleigh runners to replace the wheels in winter). Much fancier than anything we had as kids! The pads and canopy are great so that if Zoe falls to the side or arches backward, they are there to cushion her fall. We found the wagon at Sears but then found someone in Hamilton selling it for half price brand new out of the box. So we visited where Gavin grew up and bought the wagon. Zoe LOVES wagons (we discovered this on our recent trip to Edmonton when she was riding around in her cousins' wagon). It was really nice to spend the weekend doing fun family things. Now that Gavin works some weekends, we take advantage of the weekends we have together as a family.

Doctor's Visit and Cake Fun

Great News from the Doctor
We went in for a weight and lung check and found out that Zoe has gained back the weight she lost (and then some!) and is now 8.47kg (18lbs 10oz). And even better news- her lungs sounded "great" and "clear." So we are definitely celebrating tonight!

Great News from the Opthomologist on Monday
More great news to share- Zoe's opthomologist on Monday was very pleased with her vision development. He feels that her visual development is now on the same level as her overall development. So, she still has vision loss and her vision is still delayed for her age, but she is doing really well. She will continue to wear her glasses and do vision therapy. Both seem to be really helping.

Videos/Photos from Christmas
We are working on picking which photos and videos to post but in the mean time we wanted to share all the good news. We will be posting photos from Christmas soon. For now, here are some cute ones of her with cake.

Fun with Mommy's Birthday Cake
Last year, Zoe did not show much interest in her birthday cake. She was not self feeding at all and was not using her hands as much. Last week, Genevieve had her birthday and put her cake on Zoe's tray. Zoe immediately smashed her hands into the cake, then her face, and then threw it on the floor. We were so excited!!!! Here are some pictures of her enjoying the cake.

You can see that left hand is ready to drop the cake on the floor. She is eating with a whole lot of attitude these days....we love it!


Zoe still needs a little guidance in getting the food into her mouth but she is getting there.

What Zoe would look like with a mustache

Just in case you were wondering . . .

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.

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!

Some more stuff Zoe likes/an excuse to post more cute pictures!

Zoe likes hanging with her 1P36 buddies Shelby (almost 3 1/2 yo) and Matthew (2yo). We went to Matthew's house for a delicious dinner last Saturday. Being with other families who know exactly what we are going through is so helpful. This was the first time we saw Matthew out of hospital, so it was great to see him in his own home and looking so well. Shelby has been very sick recently, so it was also great to see her looking healthy. I had to fix the red eye, so unfortunately you can not see Shelby's beautiful blue eyes. It is amazing how much Zoe and Shelby look alike! We got Zoe's high pigtail idea from Shelby's mom- it works well for our kids that still rub their heads back and forth so that regular pigtails quickly fall out.

Zoe also likes eating (most of the time). At her 18month check up this past week, we found out that Zoe has gained another 20 oz these past six weeks. Zoe's current weight is 8.1kg or 17lbs 13oz! Way to go Zoe!

Zoe loves her ball that she got from her cousin Lucy last Christmas. When Zoe first got this corner chair, the ball was one of the first toys she played with in the chair. Daddy was so happy that Zoe could finally play ball at 11months old that he got a little misty eyed (daddy is such a suck). Zoe especially loves it when the ball whacks her in the face (crazy girl!)


Another thing that Zoe really loves is vestibular stimulation. Any time Zoe can be bounced, thrown in the air, patted very firmly, or swung she is happy. We use the hammock to give Zoe some stimulation time. Initially, Zoe was unsure of the hammock and would cry, but now she really loves it. Vestibular stimulation is supposed to be good for her cognitive and neuromuscular development. Zoe thinks, "Who cares, it just feels good!"

More stuff Zoe likes

Turtle

This is Zoe's turtle. It was a Christmas present from Grandma. It is small enough Zoe can pick it up with both hands. It also has a friction motion mechanism that moves him and occasionally makes nice popping sounds, in addition to the rattling of the beads in his shell.

Orange Slinky

We bought this off Sharon, Zoe's visual intravention specialist. She had a stash of them she was carrying around in her trunk. Needless to say, a slinky's a wonderful toy. We love it!



Tim Horton's bag (and other assorted trash)

We were out at the mall one day buying something, and we stopped at Tim Horton's for some provisions. We tossed the donuts in their nice crinkley bags next to Zoe in her stroller while we got settled. Turns out she loves the bags (the donuts she can take or leave). She smushed them and hugged them and laughed and laughed and laughed. She just loves playing with the bags. She also likes plastic fruit containers, boxes, plastic bags, chip bags- all sorts of fun.