I have to confess. Most of the time, I am a pessimist. When it comes to Zoe, aside from her mother, teacher, guider, I'm not sure what I am.

I used to have so many hopes and dreams for her future. I used to hope that she would grow up and be valedictorian, go to school to become a doctor, scientist, lawyer, any one of those amazing careers. I used to dream that she would meet the man of her dreams and have children, and that I would be the proudest mother in the world. Some of these dreams have changed; other have been relaced by fear.

Now my dreams for her consist of her learning to speak, learning her colours, numbers, her ABC's. My dreams for her consist of her attending a "normal" school (whatever the definition of normal is), of making friends, of society becoming more aware of and accepting of her condition. In my dreams, I still see a beautiful little girl, and I hope that she will be successful at whatever it is she decides to become.

But fear constantly haunts these dreams. I fear that she will never develop beyond where she is now. I fear she will never learn the basic ABC's and 1+1=2. I fear that my little girl will always be a 1 year old child stuck in a __-year-old's body. I fear that sending her to school will make things much worse on her. I fear that she will not make very many friends, or that she will be teased. I fear that those around her will look at her from the outside; the small head, the developmental delays, and not for the amazing child she is. I fear that society will not accept her or her condition. I fear that I will be looked at as a bad parent, or as one who caused her condition. It wouldn't be the first time.

But my biggest fear of all, is that I won't be there for her when she needs me the most.

My greastest fear is that she will depend on us all her life, and one day, we won't be there anymore to support her and help her grow. This scares me because if society hasn't accepted her condition, then how will anyone know how to take care of her and teach her, guide her, love her? Who will be the one to hug and hold her when she's upset and frustrated? Who will be the one, who, everyday, sits with her and sings with her, feverishly teaching her nursery rhymes and reading her stories about dogs and kitties, making her smile?

I do not fear losing her first. I fear her losing the only support ystem around her.

1 Comment
 
 
So this week, Zoe has had genetic testing done on chromosome 22. They are looking for 22q13 deletion syndrome, aka Phelan-McDermid Syndrome. Zoe displays many of the behavioural characteristics, such as the pica or ghewing on non-food things, some autistic behaviours, such as not responding to her name or making much eye contact. She also has some of the little known or noticeable symptoms, such as tooth crowding and long eyelashes. The results take 8 weeks, so we should know by mid-February if she has the condition or not.

We also got a phone call Thursday morning from Sick Kids hospital in Toronto, Ontario asking us if we wanted to take a cancellation for an MRI. She wasn't booked in until April 6th, but of course, we jumped on the opportunity. We woke up at 5am, dropped Isaiah off at a friend's for the day (sorry again Stacey!) and arrived at the hospital at 7:50am. They got her ready to go by her scheduled appointment time, 9am, but a few minor setbacks (the anesthesiologist wasn't there yet) delayed her MRI until 11:15am. They put Zoe under and I guess shortly after she went under, she began having trouble breathing and needed to be intubated. The MRI was over by 12:15, and she didn't sleep for very long after the MRI. Although her throat was sore from the intubation, she began eating and drinking, and we were discharged at 2:00pm. I was half an hour late for work, but they are very understanding there, and thankfully, although still in my probationary period, I did not get penalized.

 We will get the results on January 6th, 2010, when we see the pediatrician next. Too see some of the MRI pictures, please visit the page called "Zoe's MRI Scan".

Add Comment
 
 
So, we visited the pediatrician this morning, and Zoe's head circumference increased to 43.5cm!! Given her age, height and weight, however, she is still in the 0.1 percentile. Growth is good though.

On Monday, she will be having cryogenetic testing done looking for 22q13.3 Deletion Syndrome, also known as Phelan-McDermid Syndrome. I will update with the results when we get them.
Add Comment
 
 
So, we're pretty sure Zoe might be ready to start potty training; we just need to figure out how to actually get her to the potty in time. Lately, she has been pulling off her pants and diaper AFTER she has gone pee. It's progress, because now she knows she doesn't like the feeling of being wet; the only problem is getting her to tell us she has to go. This will be difficult because of her speech delays. Our hope is to get her into a more advanced ASL class to help teach her more signs to communicate with us. Perhaps if we can accomplish that, we can get the ball rolling on potty training.

Speaking of potty training...this past week, Zoe decided to have a sensory experience with her own feces and her bedroom walls and door. During naptime, she had a movement, and didn't tell anyone. Instead she decided to finger pain the brown stuff all over her bedroom walls and door. She even decided to taste some ! *gag*

It took us 4 hours to scrub everything clean with bleach. It's been 3 days now, and her bedroom still smells like a dentist's office.

Otherwise, everything is going great with her. Check out her new video on Youtube. The link is under the Pictures page on this website. Our hope is to raise more awareness of her condition.

Good night!
Add Comment