Happy Holidays/ Here's to a New Year!

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

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

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

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

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

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

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

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

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

 Zoe's Holiday Concert

 Christmas morning

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

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

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

Some Posts Easier Than Others

I love writing posts about how great everyone is doing.  I love posting cute pictures of my girls.  But some days just suck and those posts are important too.  They let other parents know they are not alone in having sucky days.  They also allow me to vent/ express what is on my mind.  So here goes...

Some Days Just Suck

We were at the hospital all day (left here 9am, home at 6pm) for two appointments.  Zoe had to see her opthomologist and Ailsa had a nephrology appointment.  The outcome?

-Ailsa's kidney function is a little worse.  Which means the med she is on is not working.  Which means she needs more medication.  Which means they have not figured out how to stop the scarring that is occurring.  Which means she is still going downward and not stable yet.

Which sucks.

-Zoe's eyes are getting drier.  Zoe is followed for her dry eyes- she does not produce tears.  Dry eyes can lead to, well to put it bluntly blindness.  When the cornea is too dry it gets damaged and then stops working.  So keeping Zoe's eyes lubricated is important.  We give her eye drops four times a day including night time drops which are not drops at all but basically like vaseline which if you ever tried to get a little glob of vaseline in to a squirming child's eye you know it is not an easy task!  So what it means is a another minor eye surgery for Zoe.  No big deal.  We know there are much worse things that could happen.  But seriously, can the poor kid just catch a break?  One good thing is that we have a date for her G-tube surgery so they are going to try to coordinate this procedure with that one so it will be one less anaesthetic.

Some Days Do Have a Bit of Light Peaking Through All Those Clouds

Every night Ailsa asks us, "What is your favourite thing from today?"  Tonight I said to her, "I loved seeing how amazing my girls are.  You (Ailsa) did amazing getting your blood test.  You are such a good girl and I am so proud of you.  And watching Zoe dance in her upsee was pretty awesome."  We got Zoe's upsee (a walking device that is awesome! see website for more info:
http://www.fireflyfriends.com/upsee ) last week in the mail and have used it a few times.  Zoe is loving it so far.  Today I could not figure out what she was trying to do until she signed, "Ailsa."  Ailsa was randomly dancing in the hall of the hospital (because that is what one does when one is three years old).  I realised Zoe was trying to dance too.  So we stood there stomping our feet and giggling.

That did not suck.

That was awesome.

MRI and Ophthalmology Results

Zoe on the Upswing

First, I wanted to post that Zoe seems to finally be on an upswing from this latest illness. After three weeks of fever and cough (she is still coughing some but definitely getting better) and a few days of NG tube feedings, Zoe does seem to be feeling a lot better. She did a half day at school yesterday as was so excited to be there. Gavin tells me that Zoe was like a celebrity when he brought her in. All the kids crowded around and wanted to talk and play with Zoe. She of course just ate it up and was smiling and laughing up a storm. I dropped her off this morning for a full day so hopefully she makes it through the day. If not, they will page me and I can pick her up early. The daycare is a five minute walk from my work, so it is very easy to get to her fast.

This past illness Zoe showed a lot more signs of being uncomfortable and in pain than she has in the past. It was really hard seeing her so unhappy for so long. She is usually so easy going. I think the high fever is what made her so miserable. I don't blame her- I would be way more grumpy than she was!

Gavin says that Zoe only weighed 18 pounds (she was almost up to 20 pounds before this latest illness) at her appointment the other day. We are hoping most of that will come back quickly. She has her three year check up soon and we are hoping to see her at that 20 pound mark! We don't stress about Zoe's weight like we used to. We know that she is growing and healthy and will be as big as she is. We know she gets enough to eat (when she isn't sick and we have to resort to tube feedings to keep her hydrated). So the weight thing has become a joke between us. Last appointment Zoe was 19.9 pounds and we were like "Come on Zoe- only .1 to go!"

Sleeping Issues

Unfortunately, Zoe is having some major sleeping issues these past few months. Initially we thought it was because we had a guest staying in the house (Gavin's dad was here for several weeks). But Zoe has continued waking up, screaming in the night. Of course she woke up a lot when she was sick due to her fever going high and her feeling miserable. We are still hoping that since she is feeling better, she will start sleeping better. I wonder if she is having night terrors or sleep disturbances. This is quite common in children with neurological differences and most of the other 1p parents say their children have sleep issues. It can become a real issue when the child is older and able to climb out of bed. For now, even when Zoe wakes screaming at least we know she is safe in her bed and hasn't fallen out.

MRI and Ophthalmology Results

My excuse for posting is to give an update on our most recent appointments.

MRI- met with Neurosurgery on Wednesday. Zoe's syrinx from her T8 to L2 is still there, it has not changed. She does now have another collection of fluid in her cervical vertebrae. We were hoping to be told the syrinx has shrunk or stayed the same. So, not so happy to hear there is more fluid. But we were reassured that as long as Zoe is not showing any symptoms, surgery should not be necessary. He checked Zoe's reflexes (which she usually does not have a typical response to but never has) and her muscle tone in her arms and legs. His concern is the the new collection of fluid could affect her arm/hand control. Due to Zoe's weak muscle tone it would be hard to tell which is muscle and which is due to a syrinx. Despite this, the doctor was very impressed with Zoe's strength. And he kept commenting on how amazed he was at Zoe in her walker. He did not even recognize her initially. We, of course, are quite proud of how mobile Zoe has gotten so we purposely brought the walker in for him to see. We also know it is important for him to see if her leg function is being impaired at all.

Ophthalmology- saw the doctor 1 1/2 weeks post tear duct plug insertion. He says that Zoe's eyes look less dry already and is happy with how it looks. He is not sure of his long term plan for Zoe if these plugs fall out (which they frequently do). But I guess we just have to go with what is working for now. He even reduced the eye gel from four times a day to just once! Zoe does well with getting the gel in her eyes, but once less thing to remember three other times in a day is a nice break for all of us.

MRI and Tear Duct Plugs

MRI

Zoe has been due to get another MRI since October 2008 to check on the status of the syrinx in her spine. In the fall of 2008 we met with anesthesia to discuss the difficulty people have with getting an IV into Zoe. During her MRI at six months of age, they were unsuccessful (after more than 20 tries) to get an IV into Zoe and therefore proceeded without IV access. This has a lot of risks to it. So in October 2008, they decided to hold off until fall 2009. We were set to bring her in for her MRI last November, but since she had H1N1 in early November, they did not feel comfortable giving her full anaesthesia. So again, it was put on hold.

On Wednesday this week we got a call that they booked Zoe for Friday morning. Zoe was healthy (as healthy as Zoe gets which means occasional fevers but her lungs sound clear) so we were able to go ahead with the test yesterday.

They were able to get an IV in on the third try. They seemed unhappy about this (Zoe was given anaesthetic air first so she was asleep and I guess they are used to having more success with IVs when the child is sleeping) but we were very happy they got it at all.

Minor Eye Surgery

When we found out the test was booked for Friday, we started a flurry of emails and phone calls to coordinate with Zoe's opthalmologist. Zoe does not produce tears and despite us putting in tear gel four times a day, her cornea are becoming dangerously dry. When the cornea become too dry, there can be permanent damage and blindness. Obviously, not a good thing. The original plan was to put tear duct plugs in the bottom two tear ducts. That was six months ago. Yesterday, the ophthalmologist mentioned that he would prefer to do all four tear ducts since Zoe's eyes have gotten more dry.

We were very happy that they were able to coordinate both procedures. This meant that Zoe would not have to return to the hospital to get another full anaesthetic. We had to really push for this, but we were very happy that they listened in the end and were willing to do what is best for Zoe.

Recovery

If I haven't said this before, Zoe is amazing. She was groggy and a little grumpy yesterday but did great with recovery. I think she was having some bad dreams because she was whimpering in her sleep and wouldn't settle down until one of us held her. But she ate and drank great. And last night she slept most of the night.

Zoe is so tolerant of not feeling well. At one point when we were making dinner, Zoe made a noise so I went to help her with her toy. She squawked at me, pointed at a small puddle of puke on her toy, and looked up at me as if to say, "Mom, get that puke off my toy." I wiped up the puke and Zoe went back to smiling and playing with her toy.

I tell you, she really is amazing.

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!"

Zoe is a menace- photographic proof!

Hey all,


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






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


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


GGZ

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.

First Official Ontario 1P36 Get Together

Sequoya (5 years old) and Zoe (17 months)

We organized the first official Ontario 1P36 get together this past Saturday at Rock Point Provincial Park. We had one family show up from Buffalo, New York (Sequoya is 5 years old with two older sisters and one younger sister). So, as it turns out, we were the only Ontario family who could go. The park was a little out of the way but it was a nice setting. It was wheelchair assessable and had lots of open space for kids to run around (and Sequoya loves to run around). It was great meeting a new family and it made us decide that we would like to organize a couple of get togethers a year in different places so that if people are unable to come to one, they can come to another one. As always, it was good to see where a 5 yo with 1P36 is at. It gives us hope in some ways and hits us with a dose of reality in other ways. It reminds us how much work we are going to need to do with Zoe in the future (as if we aren't working with her now!) We can tell that Sequoya's parents have put a lot of time, energy, and love into raising her. It was great to see how steady she was on her feet and to hear her say "more."
Zoe's first camping trip
After the BBQ abruptly ended with the rain, we went to our campsite to pitch our tent and put Zoe inside for a much needed nap. Zoe did great with the camping but we did notice she napped a bit more. It turned out to be a great afternoon for us because Zoe napped and we sat around talking and reading our books (imagine that!) We did wake Zoe to feed her since we didn't want her waking up at 4am hungry. Zoe was a little confused about eating in the dark and gave the trees a curious look in the morning like "Hey trees, why are you still in my house?" We are planning a five day trip next week with our friend Amanda and we are really looking forward to that. Camping seems to be a great holiday idea for Zoe. She may need to nap because of all the stimulation but then we can just hang out and not feel antsy since we aren't trying to fit in any sightseeing. We do have the hiking backpack so we can go for walks when Zoe is up to it. Zoe does get over stimulated when outside and does some arching and crying, but she seemed to calm down easily in the tent.
Zoe biting her fingers
One thing we hoped never to have to deal with is now happening. It is very common for 1P36 kids to bite their hands, fingers, and wrists. The kids don't seem to notice the pain involved and are looking for that oral stimulation (some of the kids also bite to show their frustration). Zoe came home with a deep bite mark from daycare on Friday and has continued biting at that finger. She now has another deep bite on another finger. It breaks my heart to see those little fingers bleeding. Zoe does seem aware of the pain however, so this gives me hope. When she bit herself and was bleeding at the BBQ, she suddenly started arching, crying, and looked at me. So we just tell her, "That is you doing that Zoe. That is your finger. You have to be gentle with your fingers." We are also encouraging her to bite other things like her chewy bear. The only problem with that is Zoe does not have the coordination to hold something to her mouth to bite it. So we have to sit with her and hold the toy for her to bite it. And as you all know, we can't sit there holding her chew toy all day when we are trying to do therapy, go to doctor's appointments, feed her, etc (not to mention clean the house, shower, cook meals).
Opthomology Appointment
We had some good news at the opthomologist last week. He said that he can definitely see improvement with Zoe's vision since she started wearing the glasses in April. We have noticed that Zoe makes better eye contact and will track a little better but it was very encouraging to hear the doctor say he saw improvement. We will continue with the vision therapy and glasses and return to opthomology in six months to try the VEP (visual evoked potential) again. Zoe did not respond well to the VEP last time because it involves a lot of flashing lights and she kept closing her eyes and arching. She also kept pulling the electrodes off of her head. Hopefully she will be able to cooperate in six months. Either way, we will see the doctor again at that time. It is encouraging to hear that Zoe is progressing.