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!"

Happy Family Day at the Doctor's Office

So it's Family Day here in Canada and naturally we spent the day doing what we do a lot as a family- going to the doctor with Zoe! Zoe has a gastro infection and is getting dehydrated so we had to take her in. When the doctor weighed her, we discovered that she lost over a pound in the last three days. The doctor advised us to start syringe force feeding her and if she does not take in 24 ounces in the next 24 hours, we have to take her back tomorrow to discuss IV or NG tube hydration.

Arrrgghhhhhhh!

We just got the weight back on that she lost with the pneumonia! She is having a very tough winter. We are so sick and tired of worrying about weight loss and force feeding. Zoe, as always looks good though. Through all of this she is playing and mostly happy. The skin on her feet is beginning to wrinkle and turn dusky from lack of blood flow but if you looked at her, you would have no idea this is a kid who has lost 5% of her body weight and is dehydrated. She is amazing and so resilient. That is what we keep reminding ourselves. If we can just get through this winter perhaps the spring/summer season will be easier for her.

An Update on Equipment
We haven't had time to write with Zoe being sick but I wanted to give an update on the equipment. First, our friend Erin (whose daughter also has 1P36) gave us a seating system/special needs stroller. We are not sure if Zoe will need this but we took it to try it out. The place that has loaned us Zoe's corner chair for the last year needs to take the chair back. So we are going to see if the seating system is a good replacement for the chair. If not, we will look into purchasing a corner chair. Zoe has really gained in fine motor skills from having the support of the chair and we don't want to lose those gains.

Second, the pony walker and stander are scheduled to be dropped off tomorrow (if we are able to be here instead of the doctor's office) so we can check them out for the next week or so. If they work for Zoe, we will order them. It takes 6-8 weeks to get the government approval so they will pay 75%. Then we are hoping our personal insurance will cover the other 25%. We are frustrated that it will take several months to get the equipment that Zoe would benefit from now. But I guess that is the way the system works. We are supposed to think ahead by six months but how are we supposed to know what Zoe will need in six months? At this point I can barely think six hours ahead, let alone months!

The Importance of Hope

While speaking with my friend Michael about coping with having a permanently disabled child (he has an adult daughter with Down Syndrome who is fairly high functioning but still needs a lot of support), he mentioned the importance of parents having hope and dreams for their children. He spoke of the grief process parents go through that have disabled (I hate this word by the way- perhaps I should use "exceptional" like a magazine I read uses) children. When you are pregnant, you have all of these hopes and dreams of what being a parent will be like and what that child will be like. When you have an exceptional child, you grieve the loss of those dreams. It has been a process for me that I am happy to say I am starting to cope better with. I feel as though there was such a loss but then such a gain. A loss of what I had hoped for but such a gain of recognizing how wonderful Zoe is. I can see how amazing and wonderful she is and I can celebrate every little milestone. If I had a typical kid, I probably would not have noticed all that is involved in every little step. Typical children develop so quickly. You blink and they are running around. Our kids (1P36 kids that is) develop at a much slower pace. And yet, I feel as if I blinked and Zoe is almost two. She is rolling around, signing, using her hands, smiling, etc. I can remember the difficult early days when we weren't sure if Zoe would even be able to smile, laugh, or feel happy. And now look at her- her toothy grin makes me laugh every time. And so it is a loss but such a gain so that I am now able to appreciate the gains and let go of the loss.

But my friend pointed out something I had not thought about. Even though I celebrate every milestone and I support Zoe in her next step, I do not allow myself to dream or hope for her. I do not put a time on when I think she should achieve the next step (which I think is a good thing since she will get there in her own time). So how do I balance being realistic in my expectations and being a mom and just dreaming a little for her? I know in my heart she will sit up, stand, and walk some day. Is this dreaming or just expecting what potential I see to develop? Many people focus on the fact that Zoe is non-verbal and try to reassure me that she will speak some day. I am so happy that Zoe can sign. To me this is amazing. It breaks my heart that she can not yet sign as much as she would like. I can see the frustration when she is trying to tell me something but does not yet have the words. (This of course being a normal experience of all parents with their toddlers but I guess a little more heartbreaking to think she may never be able to tell me these things). But I see some of the older kids (ok, just one of the older kids) who is getting fluent in sign. Whitney reads, finger spells, knows more words than her parents. She is amazing. And so I guess I hope for that too. That some day Zoe will be able to better express herself in sign. I do not dare hope for verbal language to come along. Why? I guess a few reasons- first and most importantly, Zoe may never speak verbally and I do not want to waste my time hoping for something she can not achieve and have her feel like a failure. Second, I think our society focuses on judging a person's cognitive capabilities based on their verbal communication skills. We assume if someone can not speak verbally they must be dumb. And so I do not want to play into that. If Zoe can some day speak verbally, great. If not, that is ok too. Yes, I must admit I sometimes dream of the day she will speak "mama" but seeing her sign "mama" is just as amazing. To know that she knows who I am and can ask for me is just amazing. It is more than I would have hoped for this time last year.

And so Michael, here is a little dream for Zoe. Right now I am sick- home with fever and flu on Friday and still feverish today. So many things on my to do list that I just want to scream or go back to bed. But I put all of that aside and instead use my mental energies to think about our recent OT visit. The OT mentioned getting a pony walker for Zoe. I told myself, "Don't get your hopes up. Don't even look into it. Zoe is probably too small to fit one. Zoe probably can't coordinate her movements enough to use one." But I put all of that aside and I dare to dream and hope that we do get a pony walker. We looked it up on the internet and Zoe is just big enough now for the smallest size. We may have to put her boots on so she can reach the seat, but she should just fit. And in terms of coordination, perhaps she won't be able to use it. But can't a mother dream a little? Here is a blog that has some great pictures of a child (not a child with 1P36) in a pony walker (I don't think this mom would mind me linking to her blog- she is an amazing mom by the way with two beautiful daughters. She has some great posts on grief, acceptance, other people's comments, etc). I will also link to the video of her child running in the walker. This child was two when she got her walker, but she was higher functioning in her fine motor development, coordination, and expressive capabilities. Also, when the video was taken I believe she had the walker for four or five months. So I know this is not what Zoe will look like. But still, I do dream of her cruising around our house (now I am really glad we thought ahead and got a one floor bungalow with lots of wood flooring) and maybe some day chasing her classmates or her cousins.

http://micropreemietwins.blogspot.com/2007/01/pony-walker.html http://micropreemietwins.blogspot.com/2007/06/who-are-you-calling-poor-baby.html#comments
http://www.adaptivemall.com/ponysize0.html

The OT will be back on Tuesday to let us know what she has found out. She is hoping to get one on loan for us since they are expensive and we are not sure if Zoe will be able to use one or not. One issue is that Zoe arches her back (which is why she can not use a bumbo chair that many of the other 1P kids use). It looks like the trunk support should come up high enough to keep her from arching back too far. Also there is a possibility of getting a head rest if need be. The other issue is that she scrunches her feet up instead of keeping them on the floor. But she is doing this less and less now and she enjoys standing. She actually signs "more" during therapy when we are doing the standing. Sometimes she cries since it is so much work to stand but then immediately signs "more" after she has a rest. So I think she would really enjoy standing and getting around. We'll see.

.

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.

That pesky pneumonia that just won't go away!

Lungs sounding better but still not clear.
We went back to the doctor's today for a lung and weight check. The doctor stated that Zoe's lungs are "a little better." I asked if Zoe still had pneumonia and she said, "definitely but the right lung is nice and clear now." So I guess that is something. I will be very happy once I hear that both lungs are clear, but at least she is improving slowly. As long as nothing changes, we don't have to go back to see her for one whole month! That will be the longest we have gone without seeing a doctor since September. So we will keep our fingers crossed, continue doing the respiratory therapy, and hope that we have a nice quiet holiday at home.

Weight Gain!
Zoe gained 180 grams (about 6 ounces) whoohooo! Her appetite has definitely increased and she is back to eating table food that is cut up in small pieces. We still give her pureed food at times when her mouth gets tired. We are really happy that she is not having the choking and coughing she has been having for the last few months with table food. It is great to continue forward with our eating goals. One of the reasons we go to this doctor even though she is now 45-60mins away since we moved is that she is great at seeing the whole picture with Zoe. She has always been supportive about us giving Zoe as normal a childhood as possible. Eating has taken a lot of work for all of us, but we feel strongly that oral eating is the best mode of eating for Zoe. I have to admit that the tube feedings Zoe was on a few weeks ago really made me realize how much easier that path would be for all of us. It was so easy to get the calories into Zoe. But the gtube comes with many problems. Some kids do need tube feedings, but we feel confident that Zoe does not need one at this time.

Fun News- Getting ready for Christmas.
Zoe chopped down her very first Christmas tree this past Saturday. Since she still has a nasty cough, we picked the first tree we saw, gave Zoe a quick turn at sawing, plopped her in a snow bank, and chopped it down as quickly as possible.
I am really glad we did not plan to travel this Christmas since we would have had to cancel our plans. We really look forward to grandma coming after Christmas to spend some time with us. I think she will be very surprised at how much Zoe has changed since she saw her in July. Her communication and social skills have really picked up recently.

Communication Update

Zoe signing "more"
Zoe is signing her fourth sign!!!! Zoe has used the sign "more" a few times now. Like her other signs, it is subtle so we have to watch closely.
Speech Therapy update
I had posted previously that speech services were pending. Zoe has now started services. Zoe was evaluated a month or so ago and we were told things that were no surprise- Zoe is not showing preverbal skills. They were very positive and had a nice manner with Zoe. They praised Gavin and I for all of the things we are already doing with her (reading her books, using one word to describe things, encouraging eye contact, etc).
We saw the speech therapist again yesterday and she was surprised at how much Zoe's eye contact has changed in just the past month. Also, she was happy to hear about Zoe using signs. She gave us some recommendations (most of the things we are already doing). Two new things we are going to try with Zoe is making her request help. We have been working on this for some time with Zoe, but in a differnt way. If Zoe is reaching for a toy and starting to get frustrated, I will say to Zoe, "Zoe, look at mommy and tell her what you need." Now, Zoe will look at me which I take to me "Help me!" Also, we will give Zoe a choice between two toys and we make Zoe make eye contact with us instead of just reaching for the toy she wants.
One thing the speech therapist pointed out that I had not noticed is that Zoe does not ask for help without us prompting her. It is good that she is asking for food and milk now, but she never reaches up to indicate that she wants to be picked up and she does not ask for help. So, we are going to work on requesting with songs first and then move to toys. So far, Zoe is doing pretty well. We had already worked on her requesting the next song by making eye contact. Now, we want her to make eye contact and sign "more." It is a bonus if she is actually vocalizing too.
The other thing we will work on is using a push button that can be programed with one phrase or word at a time. For now, we will stick with the help theme and teach Zoe to use it when she needs help with a toy. We are using her chair seat for now because that is the only time she will have enough coordination to use the button properly. The therapist said it will take a very long time to train Zoe to use the button and not to get discouraged. The point of using the button is to teach Zoe to request help and also later we can add more buttons or move on to picture boards. Augmentative communication tools here we come!

Zoe Standing Video

Zoe standing, with a little help from Genevieve. This is her favourite new exercise- she actually likes this one and doesn't yell at us (too much) while she is doing it. Sometimes she will reach up and touch our faces, particularily Gavin's- she likes the roughness of his beard. She is all about beards, actually; she loves touching faces in general and particularily anyone with facial hair. The music is, of course, Bob Marley and the Wailer's "Get Up, Stand Up."

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!

Therapies, Specialties, and Developmental Milestones

At some point we may go back and explain what has happened with Zoe for the past fifteen months, but for now, we are focusing on where Zoe is now. As we already said, one thing we found incredibly helpful as parents was other people's blogs that showed their child with 1P36 thriving and developing. So, for other parents out there, I just wanted to take a minute to say where Zoe is currently.
Zoe sees OT/PT and vision therapies on a weekly basis. Zoe sees an early intervention specialist on a monthly basis. Zoe was assessed for speech therapy and services are pending. We are fortunate enough to live in Canada where these services are free for us and are provided in our home.
In terms of medical specialists, Zoe is still followed by cardiology, nutrition, neurosurgery, orthopaedics, opthomology, audiology, ENT, and continues to have monthly weigh ins at her pediatricians office. Zoe was followed by genetics and haematology but has been discharged from those services.
We are very proud of Zoe's development and take every opportunity to brag about it. We also hope this list is helpful for parents looking for when to expect their 1P36 child to meet certain milestones. Here is a list of some of the milestones that Zoe has met:
7 weeks old- successfully breastfeeding so NG feeding tube was removed
5 months old- first responsive smiles
6 months old- started cereals and other solid foods
8 months old- consistent at batting and grabbing toys
8 months old- started using a sippy cup with the valve removed. Zoe has never been able to suck strong enough to get the milk out of a bottle (we tried every nipple out there but none worked for Zoe). So, at this point Zoe still breastfeeds and uses a cup.
9 months old- started to bear some weight on legs but mostly continues to keep legs crossed and pulled up into lap
9 months old- first coo and vocalizations (is still a very quiet baby)
10 months old- instant and consistent grabbing of toys
10 months old- reacted with fear to high pitched and loud noises
11 months old- paid attention to books when being read to
11 months old- shows interest in drinking out of mom or dad's cup
12 months old- able to bring sippy cup to her mouth consistently by self but not able to tip cup back for drinking
13 months old- able to play peek-a-boo
14 months old- consistently rolling from tummy to back
15 months old- first tooth
15 months old- able to manipulate two different objects with both hands at a time rather than playing at mid-line
15 months old- smiles at camera when we take a picture (inconsistent)
15 months old- insists on eating food off of mom or dads plate. Zoe still takes a very long time to chew so we continue to mash her food.
15 months old- rolls from back to left side
15 months old- will roll/wiggle body toward a toy that she wants
15 months old- will imitate "milk" and "all done" with hands consistently, will occasionally imitate "eat"
It is important to note for people working with or parents of 1P36 children that all of these milestones took many months of practice. Our children need a lot of repetition and practice before they are able to reach a milestone (example: we rolled Zoe for a year before she finally was able to do it on her own)
There are many skills now that we are practicing but Zoe is not yet able to do on her own.
Zoe is a very easy going and smiley child now. She laughs a lot and really enjoys being bounced or thrown in the air. Zoe continues to be on the small size- at fifteen months she weighs 15 pounds, 4 ounces and is 27.5 inches long. Zoe's head has not grown as much as her body since birth and is 15.75 inches in circumference. It is very common for 1P36 children to have small heads.