First Day of School and Other Fun Days

Zoe started 3rd grade this year!!!!  Ailsa started Kindergarten!

 Zoe and Ailsa- first day of school.  The girls picked their own colour coordinating outfits.  Zoe thought it was so funny to wake Ailsa up in the morning!  Normally we shushed her to let Ailsa get extra sleep.

Ailsa all ready to go to school.  I can't believe this was my baby!  Ailsa is doing great with the transition although she was a little confused why mommy was crying...

Another Great Day!

An amazing organization called "Million Dollar Smiles" (http://www.milliondollarsmiles.ca/home) gave us a wonderful gift.  Our respite work, Alison put in an application for Zoe to receive a play structure in the backyard.  Zoe qualified and on September 13th, 25 volunteers showed up to build it in our back yard.  Despite the rain, the team worked hard to get it built by the afternoon when Zoe and Ailsa would arrive home to see the surprise.  Rogers was our sponsor- they paid for the build, the play structure, all the food, a mini picnic table and even a special needs swing!  And many of the volunteers were Rogers' employees.  Thank you Rogers!  And thank you everyone from Million Dollar Smiles!

 Zoe was feeling great that day and everyone loved seeing her face light up when she saw the play set.  There were definitely a few tears among the volunteers when Zoe was laughing and smiling on the swing.  They could see how much Zoe was going to enjoy her new backyard.

Ailsa took a little longer to warm up to the large crowd of people in our backyard but she was super excited about her new playhouse with two floors!  Both girls insist on playing in there whenever possible.  I have even had to do chest physio and administer night meds in the playhouse when Zoe is refusing to come inside!  How can I say no?  Enjoy the warm days while we still have them.

Zoe has been having a great month and we have been enjoying the last of the nice weather.  We spend what time we can in the backyard on the play set or eating outside on the deck.  The last few weeks give me hope that Zoe will have a better winter this year.  It is so great to see her smiles and hear her giggles again.  She has even put on a little (very little) bit of weight and has progressed with some of her eating skills- she can now finger feed herself!!!  This gives Zoe a lot of pleasure- she loves being independent   We hope she stays well and continues to develop- we can see how proud she is of herself.  Zoe has even pooped on the potty a few times when she asked to.  Amazing!  Imagine where she could be if she had a good long healthy stretch!

Back to School

 Zoe was very excited the first day back to school!  Zoe has a new teacher this year and so far it seems like it is going to be a great fit.  The teachers are able to include lots of body movement breaks for Zoe as well as lots of physical activity so Zoe is loving school.  Zoe also has a Hopsa sling in her classroom- Zoe loves the Hopsa!  The Hopsa is a body sling (think Jolly Jumper) that is on a track so Zoe can move all over the classroom independently and get right up to things to explore, learn and play.  Zoe loves spinning and jumping in the sling- things she can not do in her walker.  School is also looking at getting Zoe a new walker for school.  The one she had been using for the past few years is just not working well for Zoe.  We brought her Mustang walker in from home and everyone was amazed at how well Zoe is able to walk in it and how upright she keeps her self now.  So hopefully we will be able to figure out a great solution for school so we do not need to send the walker back and forth every week.

Big Girls Keep Getting Bigger!

Ailsa moved in to the bottom bunk in Zoe's room.  We were holding off with the move since Zoe is still very restless in the night.  However, Ailsa decided she it too big to keep sleeping in our walk in closet.  So Ailsa moved in to Zoe's room last week and is loving it.  She is so proud, she keeps telling everyone about it.  Luckily, Ailsa is a very heavy sleeper because Zoe has continued kicking and crying in the night but so far, Ailsa has slept through it all.  So it looks like this might actually work.  We love seeing the girls share a room.

Getting Ready for the Fall

It's that time of year again- time for all sorts of colds, coughs and pneumonia!  Ailsa has a nasty cough right now that I suspect is the enterovirus everyone is talking about.  It is just a cold to kids like Ailsa.  A nasty cold- she has been coughing and mucousy for over a week now.  But it should hopefully just stay a cold.  Zoe actually had enterovirus three years ago and ended up in hospital with pneumonia.  So far she has not caught what Ailsa has so even though the virus this year is a different strain, hopefully having had it before Zoe will be immune.  We shall see.  

Apparently "baby" woke up with congested lungs this morning and a round of chest physio did not clear her out so she had to get "the mask."  The other "patient" Zoe is getting her tube feeding on Ailsa's bed while Ailsa tends to the sick baby.  At one point Ailsa asked for medicine and I handed her an empty prescription bottle and she said, "Z-O-E.  Mom, this medicine is for Zoe.  You can't play with REAL medicine!"  In my defence, the med bottle was empty!  

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.

Last Days of Summer and School!!!!

Family Camp

After seven weeks of ongoing fevers, dealing with the PICC line, and monitoring Zoe constantly- Zoe finally started to feel better. Despite fevers, we decided to go to family camp at an Easter Seals camp. We had a great time and Zoe's fevers finally started to go away. The whole week was full of activities and there were tons of people willing to lend a hand. The girls had a great time and we plan to return another year.

Zoe rode in a canoe for the first time!

We were never sure how to get Zoe into a canoe but they had these bean bags at camp that worked great. Zoe and Gavin canoed over to the beach while Ailsa and I drove there. We played in the sand for a bit, visited with other families, and then we all had lunch there. After lunch, Zoe and Genevieve canoed back to camp while Gavin drove with Ailsa.

First Week of School!!!!

Zoe started at Sunny View school and is loving it! The teachers have a great way with communicating with us and we are all getting used to each other and the school routine. Zoe comes home excited and smiling every day.

Zoe signing Ailsa on the first day of school. The only complaint Zoe has had about school so far is that she misses Ailsa and wants her to be her school friend.

Zoe's first bus ride! Zoe gets picked up around 8am every morning and dropped off around 4pm. So far she has been coping well with the long bus ride. It helps that she is in love with her bus driver!

Why Can't Ailsa go to School?

It has been difficult for Zoe to understand (or perhaps she understands but wants a different answer) why Ailsa can not go to school with her. A few days before school started, I put Ailsa in the exersaucer for the first time. Zoe became very excited and was rapidly signing about Ailsa. It took me a while to figure it out but finally I figured out what Zoe was saying:

"Ailsa standing, Ailsa walking, Ailsa Zoe school friend."
Translation: "Ailsa is now standing which means Ailsa can use a walker which means Ailsa can go to school with me and be my school friend!" Zoe told me I was correct with the translation by smiling, laughing and repeating her signs over and over and over again over the next few days. When she gets home from school she still runs over to Ailsa to touch her hands and face and laugh with her. Hmmm, have you noticed I haven't posted anything about her missing Gavin or me?

Mom's a Canuck!

After living here for five years and having permanent residency, I finally had a chance to take my citizenship test in June. It was actually the day before Zoe got really sick and I kind of forgot about it with everything that happened after. In late August I got a notice to appear to take my citizenship oath on September 9th. We decided Zoe would have a better day at school (they are not big fans of small children vocalizing, playing loud toys, and throwing those loud toys off of their trays during the ceremony). Gavin and Ailsa went with me and Ailsa was very well behaved- she slept through most of the ceremony and then was invited to sing the national anthem at the front of the room. I noticed they were picking all the cute people/kids for the photo op. So who knows, perhaps Ailsa and Gavin will appear in some Canadian Citizenship pamphlet or webpage somewhere. Which is kind of funny since neither of them was there getting their citizenship!

Look at those good looking Canadians!

Getting Better

Zoe has been feeling better, getting stronger, eating better, sleeping better, etc in the last couple of weeks. We went away last week to a cottage that someone has donated the use of to Sick Kids families. It was beautiful and so fun to get away. Zoe did such an amazing job walking at the Petroglyphs park- she walked 400 meters! We had an appointment with her complex care team today and we are all hoping for a healthy and happy winter.

Just One More Picture

I can't resist posting this one because it just cracks me up....

Zoe: "Mom, if you take one more picture I'm going to . . .

Ailsa: "Don't do it sister! She only tortures us with so many pictures because we are so cute and she loves us so much!"

School News

Zoe's School for the Fall

We've now completed the process for enrolling Zoe in school for the fall. It is hard to believe she will be starting full time Kindergarten this year! After finding out that the Integrated Therapy Program (at Bloorview, the local pediatric rehab hospital) would not accept her, we were feeling very anxious about Zoe's placement. But we are quite excited about the school Zoe will go to.

The process here is that we have to officially enroll Zoe in the local school, they have to recognize that they can not meet Zoe's needs, and then we have to have an IRPC meeting (Identification, Placement, and Review Committee). At this meeting they identify Zoe as having "exceptionalities" and therefore qualifying for special needs assistance/programing. The hilarious thing is after the meeting Zoe came out having a "physical disability" on the paperwork and that was it. Since we know that speech delay and communication disorder are other diagnoses we found it very interesting that they only focused on the physical. I guess they have their reasons because certain schools accept certain disability labels. So we had to just sit back, sign the paper, and hope they had a good school in mind. After waiting a few months, we finally heard back from them and they recommended the school that we actually wanted as our first choice. We were worried they would try to send Zoe somewhere with less support and we would have to fight with them but in the end it all worked out nicely. Wow- imagine that for a change!

To Include or Not Include

Ideally, both Gavin and I feel strongly about Zoe attending an inclusive setting but still getting all the support she would need. Unfortunately, we know there is simply not enough money in the public system to give Zoe everything she needs without sending her to a special program. Our attitude is, as long as Zoe is getting what she needs- that is what is important. And Gavin pointed out that being with the children with different levels of needs is an inclusive setting since Zoe will learn from some of her peers and be a role model for others.

It is such a huge relief for us to know that Zoe will be getting what support she needs in order to thrive and learn. We know Zoe is capable of so much and it was great to have a meeting with staff who agreed!

Sunny View Public School

We went to check the school out earlier this week and are so excited about everything we saw. It literally had everything I could dream of wanting in a school for Zoe. They have such a great staff ratio-classes are usually 5-6 students with one teacher and two aides. Equipment lined the hallways, including "non-essential" equipment like adapted bikes and trikes! They have two swimming pools (the smaller one is a warm pool for students who can not be in the cooler pool), a regular gym, a physio gym, an art room, a "Snoozelen" sensory room, a fully accessible outdoor play area and a great atrium where the kids all meet up in the mornings and afternoons. The atrium has tables with adapted switch toys (Zoe loved this), a fully accessible tree house, and a fish pond! If you want to see pictures of the school, you can check out their website and go under the special places and programmes area:

http://www.tdsb.on.ca/SchoolWeb/_site/viewitem.asp?siteid=10217&pageid=11994&menuid=13576

Zoe Gets In Line

My favourite part of the whole day was watching Zoe explore the school in her walker. Everywhere was completely accessible. At one point a line of children walked/rolled by and Zoe saw a gap in the line, so she just got in line behind a couple of kids in walkers. The teachers all thought she was adorable and said, "Come on Zoe, you can come to my classroom." Well, that is all the encouragement Zoe needed, she walked right into the classroom with the rest of the kids! Looking around we could see that some of the kids are ahead of where Zoe is at, some where she is, and some behind which is perfect. We want Zoe to be at a place where she can learn from her peers as well as act as a role model. While her preschool has been amazing with her, it has become clear recently that Zoe is "the disabled" student and the school is not really sure the next steps for helping Zoe grow and develop. So it is perfect timing for her to start in her new school for the fall.

Zoe's New Best Friend

There was a little girl who was quite taken with Zoe and we saw her a few times throughout the day. At one point she asked me if I had a baby in my belly and when I said, "Yes" she asked if it was a boy or girl? I said we didn't know yet. She said she thought it was a girl baby because that is what she wanted when her mom recently had her baby brother. I said, "We will find out soon when the baby comes out" and she quickly replied, "When Zoe goes to school here in September and we are best friends, she can tell me if the baby is a boy or girl."

Well, good to know Zoe already has a friend lined up!