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.

Morning Commute/Conversations with My Zoe

It is amazing how much Zoe is able to communicate with only a few signs. At this point, she only uses about 20 signs consistently. She will mimic other signs if we show them to her, but she only usually uses her familiar 20 spontaneously without us signing first.

Some commutes can be challenging. Physically- carrying Zoe, plus backpack, plus pushing/carrying walker on and off of subway trains can be wearing on my back. Emotionally- listening to people's ignorant comments used to really upset me but now I just ignore them. They think I am being rude when I don't respond but honestly how do I respond politely to comments like "You should wrap his head in a towel so his neck doesn't get damaged" (yesterday's gem of wisdom from random woman on the train- what?! how do I respond to that one!). I try to stick to "if I don't have anything nice to say, better keep my mouth shut!" I want to teach Zoe how to deal with unwanted/ignorant advice since as a person with disabilities she will be getting plenty of that in her lifetime. So I try to remain composed and ignore people. Most of the time I succeed. And some commutes are made much easier by my driving Zoe to school. School is downtown, a five minute walk from the hospital both Gavin and I work at. We tried to find care closer to home so we wouldn't have to commute with Zoe but finding care like she is currently getting was impossible. They are amazing at her school- but I won't go on about that now.

This morning's commute (on subway because Gavin needs the car for grocery shopping and it was physically "easy" since I only had Zoe and one heavy backpack) was really nice. Some commutes, like today, I really enjoy sitting with Zoe and getting a chance to talk with her. After gulping down an entire cup of milk (a big accomplishment if you know Zoe and the fact that she will drink 1-6 ounces on an average day) Zoe was chatting away.

First, she needed me to know that she was all done snuggling with me.

"Mommy" "All Done"

Yes, Zoe I can see you want to be all done sitting on mommy but we are on the train so we have to stay here until we get to our station.

"Mommy" "Zoe wants" "All Done"

Yup kiddo, got your message the first time. But we are on the train and can't get off yet.

"Mommy" "Zoe wants" "All Done" pause "Walk"

Zoe, we don't have your walker on the train so you can't walk right now. Would you like to sit on your own?

"Mommy" "All Done"

This is a good example of how Zoe only signs a few words but can mean different things depending on the situation, her gestures, and her facial expression. As she signs "mommy" and "all done" this time she has a big smile on her face and his arching her back so she can slide off my lap meaning "Yes, I want to see on my own. I am all done sitting on mommy."

We then proceeded to have our usual conversation since Zoe was now sitting next to a sleeping boy:

"Mommy" "Boy" "Sleeping"

Yes Zoe, that boy is sleeping.

"Boy" "Kiss"

No Zoe, we don't kiss strangers on the train.

"Mommy" "Boy" "Sleeping" pause....big smile "Kiss"

Should I be worried- is she implying that it would be ok to kiss this random guy since he is sleeping and may not notice! Instead she reaches out and gently strokes his arm. She looks back at me with a look of triumph and with no signs I can tell she is thinking "Haha, I touched him and you didn't stop me!"

On the second train we stand since we only go a few stops. Zoe begins flinging herself backward while signing "walk."

Yes, I get it, you want to walk and not be stuck on mommy. Your walker is at school, you can walk when we get there.

And as soon as we enter the classroom Zoe has a big grin and is signing walk. I pause to say good morning to Alison (her teacher) and Zoe frantically signs "walk" while swinging her legs back and forth. Ok, kid I get it already!

And of course there was the usual heart felt goodbye flung in my direction as an afterthought as she races through the classroom door:

"Mommy" "All done"

Love you too sweetie. Now wipe those tears from your eyes. I know how hard it is for you to be at school and away from mommy.

She was too busy running after her classmates to appreciate my sarcastic comments but at least I usually get a chuckle from the teachers.

"Daddy's a girl"

I recently shaved my beard for the first time in five years (I think I'll grow it back) and Zoe's reaction was quite funny. Zoe really touching loves faces and particularily men with short beards (like mine). She loves them so much that all her male preschool teachers have stopped shaving on days when she is going to be in, making for a very scruffy daycare staff. Anyway, the first time Zoe saw me after I shaved my beard she felt my face and then signed "Daddy" and "girl" over and over again while laughing her head off. So I guess it's very funny that Daddy is a girl!

More sign language news- Zoe has come up with a sign for Alison, one of her main teachers at preschool. She signs "girl" and then smiles- she will frequently talk about her at night after school or when we tell her she is going to school the next day. Alison is thrilled- though Anthony (her other main teacher) is a bit jealous and is working very hard with Zoe to say "boy" for Anthony. We tell him to be patient- the male signs on the top half of the face are harder for Zoe to say then the female signs on the bottom half of the face. Even though this is true I'm not sure it makes him feel better. Oh well, he's at least got the scruffy beard going for him!

Colours and Behaviours

Zoe Knows Her Colours!

For the past few months, we began to notice that Zoe knows some of her colours. It started with just red and orange and she sometimes recognized yellow. I figured they were teaching colours at pre-school and didn't think much about it.

Then, a couple of weeks ago I tested Zoe. I noticed right away that it is best to test Zoe with two of the same objects. Otherwise, she just picks the object she likes instead of pointing out the colour I am asking her about. Our friend Patrick had given her an ice cream game for her birthday that has ice cream scoops of different colours.

And so I tested her. First red, then orange, yellow, green, blue....wow Zoe you know a lot of colours! Then brown, black, white, purple and I ran out of similar coloured objects to test her with. At one point we tried to get tricky with her and put two objects down that were not the colour we were asking for and Zoe got mad and slammed her hand down as if she was saying, "Don't try to trick me!" We also tried three objects at one time but noticed that Zoe got very disorganized and was not able to concentrate on three choices at once.

Zoe enjoys playing this colour game now and will even sometimes point out the colour that I am asking about and then take the other toy for herself to play with. As if she is saying, "Here you go mom, you said you wanted the red one. I am going to take this other one to play with."

I was curious so I asked school about it. I thought they were sitting the kids down and saying, "This is red. We are going to paint with red. Can you find the red truck? etc" but it turns out that they are just talking about colours as they are doing other things. So Zoe (like the other kids) is just picking up the colours from conversations and play. Which is great because that tells us something about Zoe's learning style. After we learned this, the teachers have been testing Zoe too and they agree- Zoe can correctly identify all of her basic colours.

What Else is Going on in That Head of Hers?

Then it got me thinking- what else is Zoe thinking about that we have no clue. And so we started finger spelling. So far the only two words Zoe consistently correctly identifies is "dog" and "Allison" (her teacher from school). I think it is hilarious that she recognizes dog but can't spell her own name!

Zoe has also been trying to identify adults when talking about her teachers at school. For example, she used to sign "mom" for her female teacher but now signs "girl." The other day when she was walking around the hospital, I noticed that when she passed a man she immediately signed "daddy" as if she was saying "He's like daddy." So we are working on "boy" but that takes more fine motor coordination than "girl."

If you ever see me on the subway with Zoe then you may think I am just crazy. The conversation goes something like this:

Zoe signs "daddy" while looking at a man.

I respond, "Yes, that is a boy like daddy."

Zoe signs "kiss."

I respond, "No, we don't kiss strangers" at which point the man begins to look uncomfortable and is thinking "what a nutter, that kid isn't saying anything."

If the person is eating Zoe will sign "Zoe eat."

To which I have to respond, "No Zoe, that is not your food." Again, the stranger looks at me like I am nuts.

What people don't understand is that I can't just ignore Zoe's questions and requests. First of all, she would get really frustrated. And secondly, she is persistent. She will just sit there repeatedly signing "kiss, kiss, kiss, kiss" until I tell her "No you may not kiss that stranger who happens to be a boy like daddy!"

Zoe Able to Control Herself

The other thing we have been working on is helping Zoe identify how she is feeling and to help her appropriately express those feelings. And Zoe has done amazing with controlling herself. For example: Zoe will sometimes pull our hair or pinch our faces when she is very excited to see us. So we will say, "Be gentle Zoe" while taking her hand and gently touching our faces with her hand. Now, we can say "Zoe, what are your hands doing?" And Zoe (usually) will immediately stop being rough.

Another example is the other night Zoe was angry at me for making her go to bed. She kept signing "angry/grumpy" and "mom." (Yup, she likes to let me know that I am the one she is mad at- gee thanks kid!) When I started to put her in her bed, she leaned forward with her mouth open to bite my shoulder. I said, "Zoe, what are you doing with your mouth? Can you make a good choice here?" She immediately leaned her face away from me and again signed "angry" while making a sad face. I thanked her for telling me how she was feeling by using her words instead of biting me.

As her mom, it gives me great hope that Zoe is aware of her behaviour and that she can control it. Zoe will even follow directions (like go into your room to get ready for bed) when she obviously does not want to. I think that is pretty impressive for a three year old!

Zoe's Prescription for Happiness

I was having a conversation with Zoe about how I have not been feeling well lately. Working in the field that I do I know how much kids pick up on when we think they are clueless about what is going on. As if that was not enough to prompt me to make sure that Zoe knows what is happening, her teacher asked me how I was feeling when I dropped Zoe off yesterday at preschool. I had stayed home from work last Friday and Gavin took Zoe to school so I figured that is why she was asking. But she elaborated and said that Zoe had seemed worried about me and was signing "mommy" and "hurt" at times. And so I had this conversation with Zoe today:

Genevieve: "Mommy hasn't been feeling very well but she is seeing doctors so they can help mommy feel better. Hopefully mommy will feel better soon. But you don't need to worry about mommy."

Zoe signs "kisses"

"Oh, are you going to give mommy kisses to help her feel better?"

Zoe smiles.

"That's a good idea. Kisses would help mommy feel better. What else do you think will make mommy feel better?"

Zoe signs "milk"

"Milk? You think milk and kisses will make mommy feel better?"

Zoe smiles and signs "play"

"Oh and playing will make mommy feel better too. Kisses, milk, and playing. Anything else?"

Zoe signs "sleep"

Laughing I say, "Yeah you are right, sleep would help too. So is that what mommy should do, get lots of kisses, milk, playing, and sleep?"

Zoe smiles and signs "mommy" "happy"

"Yes, you are right Zoe. I think those things would make mommy happy."

So there you have it- Zoe's prescription for happiness:
kisses, milk, playing, and sleep

Sounds good to me!

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!"

Denny's = Eat

Zoe is Brilliant

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

The Other Sign that My Child is a Genius

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

And the Sign that my Child is Amazing

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

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

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

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

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.

Disappointing Doctor's Visit Today

Zoe cracking herself up in hospital. I love that smile!

Feeding Issues

We went back to the pediatrician today for her to listen to Zoe's lungs and assess the feeding issues. When we were discharged last Thursday, we went home with the NG feeding tube in place. Zoe pulled it out on Saturday so we decided to see how she would feed without the tube. Saturday and Sunday she did not eat as much as she usually does, but she did well enough to stay hydrated and keep her diapers wet. Today Zoe actually did awesome with feeding. So I am hoping that she will continue to eat lots and make up for the weight she lost. At the doctor's today, Zoe weighed 7.9kg (which is still .4 under what she weighed two weeks ago). Since Zoe is eating well today, we will continue without the tube and see how she does.

Lungs Sounding Worse

The biggest issue that the doctor was concerned about is that Zoe's lungs actually sound worse than they did last week. They sound "more wet, wheezy, and crackly." I can actually hear a bit of a wheeze/whistle when Zoe breathes. The doctor wants us to return to her office on Thursday so she can have another listen. In the mean time she is going to look into inhalers for Zoe. The issue with the inhalers is that they will speed up her heart rate since they are a steroid and the doctor is not sure if this will be too much for her heart. So if Zoe does need to start inhalers we may need to go back into the hospital to be monitored while the medication is started.

As you can imagine this was very frustrating. I was hoping to hear that Zoe was improving and we could take a break from so many doctor visits. Our doctor is usually very positive so it worries me to see her so concerned. The good news is that Zoe is doing well at the moment and is not in respiratory distress. We will just have to keep hoping that she will be able to get over this by herself without further medical intervention.

One last kicker- needing a special needs car seat

As if this wasn't a down enough visit, I asked about car seats and got an answer I was not expecting. For now, Zoe has been in the rear facing infant car seat that can accommodate a child up to 22 pounds. Zoe is not even 18 pounds so she still fits it. However, Zoe is getting so tall now that her head is starting to reach the top of the seat. I asked if we should start looking at getting a front facing car seat but the doctor is concerned that Zoe does not have the muscle tone to be front facing. In an accident, Zoe would not be able to protect herself during impact. So now we have to look into getting a rear facing seat that can accommodate a longer child. She recommended checking convertible car seats and see if she can fit into one of those. If not, we will have to look into and order a special needs car seat. We know a couple of 1P36 kids who use these. I was just disappointed to hear that Zoe is not ready yet to just move into the next step car seat. Oh well, some day right?

Summary of Hospital Visit

I am not going to detail everything here but basically we ended up in hospital because the first med did not get rid of her fever and the second med gave her horrible diarrhea with blood in it. Also, she started having a lot of pain with her NG tube feedings. The third med she was started on in hospital ended up giving her a terrible rash and she ended up thrashing about for over ten hours and that was with benedryl on board. Zoe tolerated the fourth med so we were released to continue the med and tube feedings at home. We are glad it was a short visit but it was not an easy one. Zoe had a lot of pain because of the diarrhea, rash, and possibly chest pain with the pneumonia. It was really hard to see her in so much pain and to have her sign "mom" or "dad" and look at us like we should fix it. But she is feeling much better now. She has big smiles and is very playful again. So hopefully we will figure out this whole lung thing and she will keep improving.

Improving Communication Skills

Throughout all of this, I have been very impressed by Zoe's communication skills. Her signing has gotten to the point where she was able to tell us that her stomach hurt her when she had the diarrhea. Also, yesterday she was signing that she wanted the tube put back in her nose because she was tired of eating with her mouth. It was great to see her figure out what the tube is for and that it is easier than eating with her mouth. However, we do not want to go down the permanent tube route so we are pushing her with her feeds again. It is really great to see that language comprehension and expression coming together for her.

Zoe temporarily on tube feedings again

Zoe looking a little shocked after getting the tube in. Even with a tube shoved in her nose she is gorgeous!

Showing off her arm boards that we taped in place so she can not pull the tube out when she is in her crib. Check out that double chin and those teeth!

Zoe at seven weeks just before we got rid of the feeding tube. I wish I could say getting rid of the tube solved all of her feeding issues, but as we have already talked about numerous times Zoe continues to have difficulty with oral feeding. We are just so happy that she is able to eat and drink enough to sustain herself when she is not sick.

Thank you to everyone for their thoughts, comments, and phone calls right now. We truly appreciate the support.

Update on Zoe:

We went back to the pediatrician's office yesterday (Friday) to see if the antibiotics were working. The good news is that the antibiotics do seem to be working. Zoe's fever is down and the doctor said that her lungs sounded better than they did on Monday. So, the issue now is that Zoe is still refusing to eat and drink and is getting dehydrated. She also lost a little over a pound in the last week. A pound for most of us would be no big deal, but if you only weigh 18 pounds, a pound is not a good thing to lose.

The doctor gave us two options. One was to force feed Zoe with a syringe. We did not think this was ideal for a few reasons. First, Zoe already has eating aversions and we already push her constantly with the eating. We were afraid to make this worse by force feeding her. Secondly, it takes us about 20 minutes to get half an ounce in Zoe with a syringe (we have tried this before). Obviously this is not enough fluids and therefore she would still be dehydrated. And thirdly, we were concerned that Zoe would start having negative associations with syringes. Zoe takes her heart med by syringe three times a day and at this point she is very cooperative with taking it. If we start force feeding her with syringes though, she may resist us giving her the med in the future.

The second option was to return to the emergency room and have them attempt IV access again. I asked if it would be possible to rehydrate her through an NG (nasal gastric tube that goes from her nose into her stomach) rather than an IV. The doctor said this would be a good option but we would still have to go to the hospital to get the tube placed. At that point I asked about a third option. Since we had two NG tubes left over from when Zoe was on tube feedings as an infant, I asked if we could insert the NG in the doctor's office and then take Zoe home. The doctor was concerned that we would not remember how to run the tube feedings. I explained that we were more than comfortable with tube feedings (both Gavin and I work in the hospital and see tube feedings all the time, Zoe was on tube feedings for seven weeks, and Gavin himself used to be on NG tube feedings). Also, if we did end up in hospital I was concerned that Zoe would not get as much rest, would be more resistant to eating, and might catch some other illness floating around. The doctor said she would have to talk to her colleagues and then would let me know.

When the doctor returned to the room, she said she felt Zoe being at home with the NG would be the best plan. We made a plan for if we run into trouble over the weekend. We have a walk in clinic we can go to and there is also the emergency room. I had brought the NG tubes with me in anticipation of what the doctor would say, so the nurse came in to insert the tube. The funny thing was the nurse hasn't done an NG in a long time so I had to show her how to measure, insert, and tape the tube. Zoe, as always, did so well. She was not happy about having the tube inserted and I wish I could have provided her more comfort instead of guiding the nurse in her job. It was actually good to see Zoe put up such a fight. She immediately pulled part of it out as soon as her hands were free. After I reinserted that part of the tube and retaped it, Zoe kept trying to blow it out her nose. Eventually, I got her settled and calm on my shoulder and she started giving me a sad look while signing "mom" and then touching her nose. It is like she was saying, "Mom, there is something in my nose. Fix it!"

So, after fighting so hard to avoid tube feedings, I found myself advocating for them. It was kind of weird. But I am really relieved that she has the tube in. Since it is temporary it does not carry the emotional stress that we had when Zoe was on tube feedings before. We KNOW that Zoe will be able to eat and drink again once she is feeling better. Zoe started having diarrhea today so it is a relief to know that we are able to keep her hydrated. She did start asking for food today but was not able to eat more than a few bites. She is still only drinking about an ounce of milk at a sitting. After eating for half an hour and not getting much down we decided to give her some milk through the NG. Zoe got upset when I took her out of her highchair and kept signing "eat." I explained to her that I didn't want her to waste all her energy eating and a half hour is plenty of time. It was great to see her feeling hunger. And her temperature is back to normal today. Both good signs.

Our plan is to mimic her normal eating times and amounts. We will give her half an hour to eat what she can and then we will top her up with extra pediasure mixed with milk in her tube. We have to put milk in the pediasure because we notice that straight pediasure gives her a lot of reflux. It is nice to be at home where we can control it and give her what we know she would typically eat and drink. At the hospital they would want her on a schedule and we would rather let her try eating on her own first. Hopefully this way we can avoid going to the hospital.
Our respite worker, Riann, has been helping us out through this. It has made such a difference to have some help. Gavin was unable to be at the doctor's on Friday so it was great to have someone there to help me. Also, Riann came over Friday morning so I could sleep in until 9 before getting up to go to the doctor's. It was great to be somewhat rested before dealing with the doctor visit. It is amazing how much more rational (and how much less of a b$%ch) I am when I get a little sleep!

Update on Other Doctor Appointments

As Gavin pointed out about my last post, I did not mention any updates about her ortho or other recent appointments.

Here are some updates:

Neurosurgery- We are holding off on getting an MRI until next year due to IV access. Because Zoe is such a hard stick, they may need to do a central line in order to give her the anesthesia. Last year, when Zoe had her MRI of her spine and brain, they were unable to get an IV in despite trying over 20 times. Zoe ended up looking like a pin cushion and they ended up doing the MRI without IV access which does pose some danger. So they decided it was not worth the risk of a central line to get the MRI this year since Zoe still has no symptoms of any spinal problems. The MRI last year did show a large syrinx (collection of fluid in the spinal column) so that is why we are keeping an eye on it. Zoe may need surgery in the future to drain the spine and put in a shunt.

Orthopaedics- Zoe's hips and feet are now considered "normal" from a bone perspective. Although Zoe is still tight in both the hips and feet, the doctor says she will not need surgery. So, we will keep doing the stretches and Zoe may need some braces for walking later in life. We will just have to wait and see.

Cardiology- Zoe's heart is still functioning at the same impaired level as last April. So we will continue with the heart med and see them again in six months. Good news is that it is not getting any worse. We wish it would get better but hey, we can't have everything!

ENT- Zoe continues to have very small ear canals but the doctor does not feel it is affecting her hearing. It is still difficult to fully assess Zoe's hearing so we return every few months to give the hearing test a try. So far we know for sure that there is a slight high frequency hearing loss of the right side. So that is not too bad. She is borderline for a hearing aide in that ear but since hearing aides cause a lot of feedback, it might be better for her to just get used to not hearing as well out of that one side. Since the loss it mild, it should not affect her acquisition of understanding and using language.

Zoe's Emergency Room Visit

After nine weeks of Zoe having a runny nose, coughing, not sleeping well, and seeing the pediatrician biweekly to check on her lungs, Zoe started running a high fever Sunday night. By Monday morning, Zoe was refusing to eat and insisted on being held constantly (not like Zoe at all). Her temperature was about 39.5 (that's 103.1 for the Americans reading the blog) and did not go down much with the advil and tylenol. So, back to the pediatrician's we went. The doctor guessed that Zoe either had a sinus infection or pneumonia. Her lungs were no longer clear sounding. She prescribed antibiotics and told us to follow up with her if she still had a fever in 48 hours. On Wednesday, Zoe still had a fever, still refused to eat, and was not acting like herself. It got a little complicated since we were at the hospital seeing orthopaedics and we did not want to have to go to the pediatrician's and then return to the hospital for a chest xray. So, we called the pediatrician and got them to fax through a requisition for the x-ray. That got a bit muddled because the secretary was too busy hanging stockings in the waiting room to bother checking the fax machine but luckily the orthopaedic doctor just added a chest x-ray to the requisition he made for her hip xray. In the end the pediatrician told us to go the emergency room where we found out that Zoe does have pneumonia in her left lower lobe. The best course of action would be IV antibiotics since Zoe was not responding to oral meds. However, Zoe is an extremely hard stick and they could not get in an IV. Rather than try a bunch of times and have the IV blow in the next day, they decided to give her IM (intra muscular) antibiotics, prescribe strong oral meds, and have us go back to the pediatrician's on Friday to have her lungs listened to again. They were able to get a blood culture so if the infection does not respond to the drugs they will know exactly what is growing in her lungs and the best meds to fight it.
Gavin took off of work today and I will take off tomorrow. We were relieved that her fever seemed to be going away but by this afternoon she was running a fever again. We do not want to go back to the hospital for IV meds since this would mean Zoe would require a central line in order to get the meds since she is such a hard stick. Since we know other 1P36 kids who have constant lung infections we are holding our breath and hoping that this is not the start of a bunch of infections. The doctor in the emergency room brought up the fact that the pneumonia could be partly caused by or made worse by Zoe's choking on her food. Zoe could be aspirating her food into her lungs. Since Zoe has never had pneumonia before, this is unlikely. However, if Zoe continues to get infections then we will look into this.
It is heart breaking hearing Zoe cough and I can't stand forcing the meds into her mouth. She has gotten very clever and has figured out how to throw up right after you give the med so we have figured out ways to distract her.
Going through all of this has made me appreciate a few things in my life. Number one is how amazing Zoe truly is. She must be in so much pain right now but she is still such a trooper. She was upset with the IV and blood draw attempts but she did so well with it all. On the way home (we ended up having to take the subway and bus home at midnight and we laughed since it was in middle of a snowstorm- I am not sure the doctors would approve of it but we had no choice since we did not have her car seat at the hospital to take a taxi home) Zoe just played quietly and fell asleep. She really is such an easygoing child. We worry that doctors overlook her pain since she does seem to have such a high pain threshold. But since we know her so well, we can advocate for her when know she is not herself.
One of the other things it made me appreciate was Zoe's communication skills. This was the first time that Zoe was in distress and could sign what she wanted/needed. She kept signing "mommy more" or "daddy more" when she wanted us to just snuggle her. She also signs a very firm "no" and "all done" when we try to feed her right now. It is so much easier now that she can tell us what she wants. We can see how much less frustrated she gets since she can communicate her needs.
Another thing I appreciated last night (and always appreciate) is the great partnership I have with Gavin. He and I were always on the same page. We advocate for Zoe in the same way and we both feel comfortable and confident in questioning the doctors. Having children puts a strain on any relationship. Having a child with special needs puts even more strain because you are more sleep deprived, worried about different things, and for us there is a huge loss in income since we are unable to work full time. On average, it takes about 20 hours a week to coordinate Zoe's appointments and take her to the doctors. That does not include the extra time it takes to feed her or do her therapy. And that does not include when she is sick and it takes much longer. 20 hours is a part time job! No wonder we hardly ever have time to spend alone as a couple! Even though Gavin and I are exhausted right now and very worried about Zoe, we are always still on the same page. I just can't imagine if I didn't have someone by my side going through all of this.
Anyway, I have to take Zoe back to the doctor tomorrow and hopefully all is well. As soon as this cough clears, I look forward to getting some sleep. It is incredibly hard to sleep when your child is struggling to breathe. Since Zoe does not have the muscle tone of a typical 21 month old, she is not able to have productive coughs which makes it harder for her to clear her throat and initiate breathing after a coughing fit.
I hope she gets her appetite back soon. Last time she was measured she had gained 6 ounces in the past three months. Not bad since she has been sick for the past two months. More importantly, we have to be sure she is staying hydrated.

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.

Can I get some more attitude with that sign?

I was trying to get some pictures of Zoe doing some signs so I decided to start with "all done." Here is a picture of Zoe saying "all done" with a whole lot of attitude (in her defence this was probably the 20th picture I had taken trying to get her saying a clear "all done"). I think she was saying she was all done with our photo session because she refused to do any more signs for the camera after "all done." Perhaps I will start with a different sign next time. Her all done is definitely nice and clear in this photo. And anyone who speaks sign language will know that the facial expressive part of the word is just as important as the sign itself!

Signing mommy, daddy and Zoe

We have had some great gains in the communication department in the last few days. Zoe imitated signing "mommy" about a month ago and has done it occasionally since. Two days ago she did "Daddy" for the first time, and just yesterday she looked right at me, put her hand to her head and signed "Daddy" very deliberately. Needless to say I was thrilled. Genevieve has told Zoe that all she ever needs do is that sign and I will do anything for her, and I think she might just be right. And then tonight, about 20 minutes ago, she did the sign we have made for Zoe (it is basically the sign for "mine", repeated twice- or that's how we do it anyway. She does it however she can) repeatedly as we were getting her ready for bed. We got some video of it- of course when we took out the camera she stopped doing it as clearly but it is there.

That brings Zoe's total number of signs to seven. In the order learned they are- milk, eat, all done, mommy, more, daddy and Zoe. Mommy, daddy and Zoe she only imitates so far- the others she will initiate herself, though sometimes not at the right times. We also think she can say no by shaking her head.

Exciting stuff!

OT Update

Standing
We had some exciting news from Zoe's OT, Judy yesterday. Judy does both OT and PT with Zoe once a week. Gavin and I do an intensive therapy routine with Zoe five days a week and her teachers at daycare do a light therapy routine when she is there two days a week. We started a standing exercise (we do some Medic exercises with Zoe for those who are familiar with Physio) last month and Zoe has already picked it up (amazing for Zoe to pick up on a new skill in a month!) Zoe has been doing really great at the standing exercise and I was very excited to show Judy how well things are going (Judy had been away for the last two weeks). Judy was so surprised at how quickly Zoe has picked up this exercise and I could see the excitement on Judy's face. Judy started talking out loud about what the next steps are and said in an excited voice, "You know what this means right?" I didn't really understand where she was going with it, so I just said "Sure" and laughed. Judy said, "This means that Zoe can weight bear. This means that Zoe has the bone, joint, and muscle strength to weight bear. Which means that Zoe will walk some day. It is going to take a lot of work and time, but Zoe will walk." I don't think I really let this sink in until today. I guess Gavin and I have always assumed Zoe will walk. When we bought our house we planned for worst case scenario and went with a one floor bungalow just in case Zoe needs a wheelchair or walker. But we have always been hopeful that Zoe will walk independently one day even if she needs a walker or wheelchair initially. So, now that I have had time to think about it- Judy's statement is quite exciting. It is great to hear that Zoe will walk some day. We know it is a long way off for Zoe and will take a lot of work, but it is very encouraging to hear that she will walk. And it is also encouraging to hear that all of the work we are doing with Zoe is paying off. It is exhausting doing constant therapy with Zoe and sometimes frustrating as we see other kids are able to achieve skills without the intense therapy. Zoe is one of those kids though that needs constant intervention. So, it is nice to know that what we are doing is benefiting Zoe and that it will pay off in the long run.
Belly Pivot
The other exciting thing that Zoe is doing is she is starting to move on her belly when doing tummy time. She kind of spins in a circle at this point (a very slow circle) but it is great to see she is moving for toys. She can roll onto her left and right sides from her back but still can not quite get all the way onto her belly. So, we use a wedge to give her some help with gravity and she is able to roll all the way over. This way she gets the feeling of rolling and it will create that mind/body memory which helps her seek that stimulation as she builds muscle strength.
Goals
So, what's next? Now that Zoe understands how to stand (with a lot of support and balance from us holding her), we will work on building her endurance. Currently, she can hold the stand for about 10 seconds. We will work on slowly increasing that time and her endurance. We will also continue to work on all the other skills (rolling, sitting, banging, clapping, eating, sign language, etc).
Sign Language
Another interesting observation Judy made is that she feels Zoe's language development is being held back by her fine motor skills. It is becoming obvious that Zoe understands a lot more signs than she is able to sign. Her speech therapist is coming in two weeks to start work with a "button" that Zoe can hit and it will speak a phrase. We will continue with the sign language while exploring technology to help Zoe express herself. Zoe loves when we sign with her and do hand over hand signing (she smiles and laughs) so at least that is one of the therapies she can enjoy.
I will try to get Gavin to record and post some video of Zoe standing. We are so proud of her!

Our PA trip/ Joe's wedding and Zoe's weight gain

Zoe with Uncle Joe and Aunt Kristen

Visiting with Friends and Family
We are still recovering from our big PA trip. We had a great time visiting with friends and family. We have now learned that travelling with Zoe takes a lot longer than it would with a typical child and we have to pace ourselves. We were not able to see everyone we wanted, but decided to shorten the list of people and really spend time with the people on the list. We had a great time showing Zoe off to old co-workers at the Children's Hospital of Philadelphia, visiting with Aine and Ailish (twins that I used to take care of), and hanging out with various friends and relatives. Zoe, as always, just went with the flow and did such a great job staying calm with so many new people to meet. She did a lot of arching, but we figure that she was overstimulated most of the time. Zoe also did not eat very well but drank a lot on the trip. Since it was so hot in Philly (we forgot how hot it can get!) we figured all the drinking was a good thing. And apparently she was getting enough calories.
The Big Weigh In
We went to the doctor yesterday to check Zoe's weight (previously, she had not gained more than 3 ounces since last November) and had a great surprise- Zoe gained over a pound this last month! I was so excited when I saw those numbers that tears immediately came to my eyes. Gavin and I have been so stressed out with Zoe weaning herself and not eating very well. We kept worrying that she would lose weight. But Zoe has shown us, yet again, that she knows exactly what she needs. Zoe's head has also grown a little. We could see how relieved the doctor was to see Zoe finally putting on some weight and head cm. Dr Taylor is an amazing doctor and really gives Zoe a chance to do things on her own first. Even though we have moved and her office is an hour away, it is worth making the trip every month because we know that the doctor is making choices with all of Zoe's development and social situation in mind. Now that Zoe has totally weaned herself and is taking pediasure and cow's milk, we have decided to stop pumping. I say we even though it is me pumping because we have made this decision as a family. At this point, I am pumping for about an hour total a day and getting less than 5 ounces total. It just is not worth the effort and time for such a small amount of milk. The doctor agreed with this plan. I am a little nervous that taking away the breastmilk will affect Zoe's growth and immunities, but we feel that it is time. Zoe has shown us that she does not want to breastfeed anymore so we are following her lead.
Zoe Signed Mommy
Zoe is really picking up sign language now. Zoe is consistently using milk and eat when she is hungry or wants a drink. She is inconsistent, but trying with all done. Also, for the first time ever- Zoe imitated mommy on Sunday night. We were very excited to see this. I kept thinking "My little girl has finally said mommy!"
Getting back into a routine
When I was doing Zoe's PT yesterday, I noticed that the arching is less since we got home. Also, Zoe's sitting skills are really progressing and she will sit for about 20 seconds before falling over. She is still very tired from the trip and is sleeping a lot. Since Zoe has vision, speech, and OT/PT coming this afternoon, I am letting her sleep the day away until they get here.
More people coming to visit this week
Gavin's mom flies in tomorrow, my brother Tom, his wife, and their four kids drive up tomorrow, and Gavin's aunt Patsy is visiting from Bangkok on Saturday. So we are going to have a full house and we know Zoe is going to be over stimulated again. We will get back into a routine once everything settles down. For now, its more important that Zoe get her sleep so she can keep on eating and packing on those pounds!