How do you express in words your appreciation for support and encouragement from complete strangers who became your family almost overnight? How do you say thank you for lifting me from darkness and defeat when all I wanted to do was give up? How do you tell someone you feel overwhelmed with warmth and love when yesterday, you didn't know them at all, and had your child not diagnosed with disabilities, you probably never would have?

For when Zoe was first diagnosed, thank you for calming my fears and reassuring me that Zoe was going to be okay.

For those times when I thought I was finished grievingthe future I had dreamed for her, thank you for showing me that Zoe still has a future, and a very bright one.

For the times I felt so overwhelmed with being a special needs parent and just wanted to run away, thank you for reminding me of the joy and the rewards of having a special child. Every parent believes their child is special, but we special needs parents have the SPECIAL children.

For the times your children have been sick, and for the times your angels grew wings, thank you for allowing me to pray for and with you, share your tears and grieve with you.

For the times I've felt weak with fear and defeat, thank you for being my strength until my strength came back.

I feel as if this is not enough. I can say thank you over and over again, but words cannot express my gratitude for my micro family and for all the little Micro Miracles and Angels I have gotten to know and love. Thank you, beautiful miracles, for humbling me and teaching me the beauty this world and God has to offer. I will never be able to express from the very depths how honoured I am to know you and love you and call you my family.

Thank you, thank you, thank you for everything you have done for us. We love you all.

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The Anniversary 06/25/2010
 
An anniversary. What is it? A joyous occasion? A time to celebrate? Candles, cake and ice cream and presents? Or is it something else.

Today, June 25, 2010, marked the one year anniversary of our world changing right before our eyes. It marked the one year anniversary of being told that we were officially special needs parents. It was one year ago today that Zoe was diagnosed with microcephaly.

I remember the day all too well. We had anticipated June 25, 2009 for months. Our turn for Zoe's assessment had finally come up after a three month wait list. Autism. We knew it. We had no doubt in out minds that Zoe was a high functioning autistic child. We just needed a doctor to confirm it.

She approached me with a pair of sunglasses and held them up to me. She expressed no words as six-month-old Isaiah mouthed a toy car. I put the sunglasses on and she smiled that gorgeous smile. She reached for the glasses back and put them on her face upside down. Finding her doll, she cradled it like she was its mommy, then threw a tantrum when she reached for a book and we gave her the wrong one. No words were spoken by her.

"So, she has autism, right?"
"Actually, no, she doesn't. She's too social and does make eye contact, there is no possible way she is autistic." This is where I breathed a momentary sigh of relief thinking that okay, she was just a little behind but she's perfectly healthy. Then the pediatrician pulled out her file and began going through all his notes from birth. He then took her and put her up on the bed and tested her reflexes. She loved to play with the telephone. He did a physical, and finally, measured her head circumference. Then he measured mine, then my husband's, and finally, our son's. He was apparently trying to rule out hereditary as a possible cause. My husband and I sat in silence as her looked through his notes again and began plotting measurements on a growth chart. Our hearts sank with the news.

"Well, she does not have autism, but she's microcephalic."
"I'm sorry, she's what?"
"Zoe has microcephaly. It means small head. Her brain isn't growing properly causing a small head. She's going to need bloodwork and an MRI to look for a cause, so let me get those requisitions in right away."
"Wait, what does this all mean for her? Is this common, is it normal, what does it mean for her prognosis?"
"I don't know, and we won't know until all the tests have been completed."

He went on to explain to us that Zoe was born with a normal head circumference in the 25th percentile, but growth began to slow at 8 weeks old, and by 5 months old, she was officially microcephalic, finally under the 1st percentile. Her head circumference measured 43cm while her brother, who was 20 months younger, measured 43.5cm.

So that was it. We were hit with a ton of bricks, just like that. We walked in parents of a child who was speech delayed and walked out disappointed, deflated, saddened, scared, confused parents of a special needs child.

Researching microcephaly on the internet didn't help me. It only scared me even more, but then I found the support groups and gained a whole new family who felt the same grief, disappointment, and finally, joy and pride of being parents of a microcephalic child. The internet also inspired me to create this website so that other families dealing with similar situations, whether speech delays or microcephaly, know that what it says elsewhere is not true of every case, and my little Zozo is living proof! As of today, one year later, her head circumference is 43.75cm, putting her between -4 to -5 standard deviations below normal. Isaiah's head circumference is around 46 47cm.

Going back to the support groups...They've helped each other, and me through those difficult and scary times, and I couldn't ask for a better family who knows exactly what I'm going through, and should Zoe ever end up going through what their children do, I am so thankful I have a family to turn to.

THANK YOU THANK YOU THANK YOU for all your support! Words can never express how much I love all of you and am proud to call you my family!







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Hello, Hello! If you're a frequent follower f Zoe's, you probably noticed a few more pictures, a new home page picture and new updates on the home page.

It's been pretty busy around here, with school and whatnot. I've been studying a lot so getting on here with updates is difficult. But I have a moment now.

Although I no longer participate in Zoe's speech therapy sessions due to scheduling, she is apparently doing very well. According to the updates I receive, she has moved up to the next level. She is still travelling to find her picture, and she has been working with two pictures, one desireable object and one undesireable object. According to her dad, she is about to start two pictures of desireable objects. In Occupational therapy, which I do attend, she has mostly been playing with things that help with her fine-motor skills while incorporating the PECS program. She has a board of 5 pictures of games and activities, and she chooses which activity she'd like to do first (usually Mr. Potato Head or Shaving Cream), and spends about 5-10 minutes playing with the object before cleaning up and choosing another activity.

Her speech is coming along. She is still severely delayed, but she "talks"more and more each day and strings multiple words together more and more often.

Other than that, we have just a few short weeks before we see her geneticist again and get the results of her microarray testing. Look for those updates on or around July 2

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I haven't been able to get on here lately due to some scheduling changes and being very busy. I start school next Wednesday but I promise to try and keep everyone updated. Let's jump right to the chase.

We have had a recent change of events. Back in February, we received the diagnosis of 22q13.3 Deletion Syndrome for Zoe. On April 7th, we saw her pediatrician who told us the test result was negative. I told him we were told positive, and so he gave me the report. It turns out the lab at the hospital accidentally tested her for the wrong chromosome deletion. They tested her for DiGeorge Syndrome, 22q11, instead of Phelan-McDermid Syndrome, 22q13. That same afternoon we sent Zoe for another blood test. Yesterday, just three weeks later, our pediatrician's office called to say the 22q13 test was negative, it was normal. Baffled, was I, because the lab had told us with the original test that the FISH test would take 8 weeks to complete. This test took only 3. So I called the lab and they told me that, yes, it should have taken 8 weeks, and there is a possibility they did just a simple blood test. Currently, Zoe's file and testing is now sitting with both the Genetics Director and the Hospital Director searching for answers as to why there is this confusion.

So now we do not know for sure if Zoe has the deletion or not, and we are not going to poke her anymore. We decided we're just going to wait to see our geneticist in July and get the results from the microarray test instead.

On another note, Zoe has been starting to have what we think are absence seizures. She will be playing happily and blank out, staring at the ceiling. It takes a few seconds to get her out, and she will not respond to us yelling her name. When she does snap out of it, the entire upper body twitches and her shoulders and head shake as if she's shivering. While we know this could be nothing, we'd still like to have a test done to find out why and if anything is happening. Her pediatrician says he will not send her to a pediatric neurologist until her genetic testing is completed. We have since contacted her geneticist asking for a referral.

Other than that Zoe is doing very well with speech therapy. We are well into our PECS program. We attempted to implement the program into the home which did not go over so well, due to the unfamiliar environment. Instead, we are continuing weekly sessions at the Centre, and working on travelling. She's still a little confused with travelling and requires hand prompts, but she is doing very well and is very enthusiastic about the program.

Zoe has also started Occupational Therapy to address her sensory delays and issues. We haven't started on anything specific, except trying to get her to do more structured activities also implemnting the PECS programs (we let her choose the activity through her PECS boards),

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March 25, 2010...It was 3 years ago today that I gave birth to this beautiful little girl, Zoe, and beautiful she is. My little 6lbs 6oz 18.5in long baby girl born at 5:25pm is 3 years old today.

And as a special birthday present, our local newspaper featured a story on her and her disabilities. They also linked to this website, so if you're visiting from reading our article, thank you very much for your support. For those who have been dying to read the article, please see the Inspiration page.

See you next Tuesday!
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I apologize for the lack of an update. We switched internet companies and it took us longer than expected to get our internet working.

We have a lot of good news. Zoe has started the PECS program in her speech therapy and she's doing really well. She's picked up on it very quickly and is very eager once she realizes how we are requesting for her to communicate with us. We still have not implmented the program at home, and will not for some time. We probably will not implment it until she actually understands the concept consistently.

She also started Occupational Therapy this past week. There are a lot of sensory issues that need to be worked on, and so we are going to focus on those. We learned that when Zoe is hurting the cat, she is not doing so intentionally. This is not a behaviour, but a deep desire, a need, to feel something. This also explains why she bangs her head against the floor. She can't feel anything, and so she needs something to be able to feel, and pain and pressure are the only ways she knows. We are going to learn a new program to try and help her learn new ways to feel something. Her Occupational Therapist is coming up with a program this week for her.

We also found another family in the same city with Zoe's deletion. Apparently the chances of two children in the same city having this chromosome deletion is less than one in a million. The funny thing is, my husband went to high school with the mother. Talk about a small world.  Zoe and the young girl in this family have a same karyotype. This little girl is two years older than Zoe, and very sweet, but displays many of the same behaviours as Zoe. Her mother and I met at an indoor playground in town and had a nice chat for a few hours while our children played. It was very relieving and relaxing to be able to connect with someone who knows what you're going through, and can give you advice on it. It;s so hard trying to explain to people why Zoe is the way she is, and it was very comforting to not have to for once, because this person already knew it all. I hope we can get together again sometime.

More updates to come again soon. Keep watching

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Zoe had speech therapy yesterday. It's been going very well, except that we cannot get her to string words together, as we had hoped. She will string "It's a" and "There he/she/I is/am", which is great, except her speech therapist says this doesn't count, as it's a whole phrase. However, she says it is great that Zoe is using it in the correct context.

Given her recent 22q13.3 deletion syndrome diagnosis, we will be starting a brand new direction next Tuesday. We will be starting an Augmentative and Alternate Communication system called Picture Exchange Communication System or PECS. The general idea is there is a phrase at the top of the board "I WANT" for example. Below it are multiple pictures. If Zoe, for example, had a few games that had balls in it, and she approached us saying "Mommy/Daddy, ball", we wouldn't know what she wanted, and risk a tantrum if we give her the wrong ball game. With PECS, she can approach us with her board that says "I WANT" along the top, and point to a picture of the ball game that she wants. This way, we know what she wants, don't risk a tantrum, and she has an alternate way of communicating with us until she becomes more verbal.

We're both very excited about this new approach, and really look forward to starting it. Her speech therapist says she has talked to a few clinicians who have used this program with kids with 22q13 and say they had a lot of success with it. Well will definitely keep everyone posted about her progress with this system.

Her speech therapist, and the Children's Centre social worker have both recommended we start Zoe in a daycare setting, two mornings a week, to try and start integrating her into school and start to teach her some more structure. While her father and I were very iffy on this, given that both of her conditions are rare, and even we are still learning how to help her, we have decided that this may not be such a bad idea/ We are looking at entering her into the daycare at the same location as her playgroup. This way, I can drop her off in the daycare, take her brother to playgroup, and pick her up on my way out. If anything were to happen, I would be in the same building. If she needed some form of extra attention, or if the daycare providers had any questions or concerns, I'd be right around the corner. So, we are going to start thiese processes next week.

Will update again soon!
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The results are in. The FISH test that Zoe had done in December produced a positive result for a chromosome deletion. Zoe has been diagnosed with Phelan-McDermid Syndrome.

I expected the diagnosis, but hoped I was wrong. I can honestly say that as much as I love her and know the diagnosis doesn't change who she is, I am saddened by it. It's another incurableable condition that we can add to a possibly long-list-to-come of disorders she may be diagnosed with. But now that our suspicions have been confirmed, we have told her speech therapist, who has informed her occupational therapist-to-be and we are going to rework her therapy and gear it to help her with issues that are presenting because of PMS.

She's doing wonderfully today. Funny story. We were eating breakfast this morning, Multi-Grain Cheerios, and her brother began to stand up in his high chair. So I said "Oh no!", to which Isaiah responds "Oh Mo!" I looked at him with my "Don't you dare" eyes, and said "On your bum, Isaiah". And from behind me, a little finger points out towards her brother and shakes in a scold, as she says "Uh bum baby!" (On your bum, baby!). It was the cutest thing. She's like a little mommy to him. I'm so proud of my little girl!
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Well, the results are, there are no results. Not because the tests didn't show anything, but because the tests performed haven't come back yet.

It went pretty well today. They put a urine bag on Zoe, just in case the doctor wanted to order more tests, which it turned out, he did. Mostly, it was a just a medical and family history for Zoe and our families.

We also got some insight into Zoe's MRI results and why they are pointing towards a metabolic condition. The best way to explain it is that the brain is filled with grey matter and white matter. The grey matter, surrounding the brain, sends signals to the white matter, which signals to the spine and the rest of the body what to do. Please keep in mind, this is our understanding and the way the doctor explained it to us. I apologize if I'm at all mistaken in our interpretation. Anyway, there is a slight disruption between the grey matter and the white matter in the brain, so not all the signals are getting to where they need to go. Because of this disruption, it is most likely a metabolic condition causing the disruption, in turn, causing the microcephaly.

We were there for a good 4 1/2 hours. The doctor discussed with us that he'd like to order more bloodwork and tests. We were hoping to avoid that, but when he said he'd be doing a microarray, which I believe is testing for a whole whack of chromosome deletions and/or metabolic disorders, we decided to go for it. We allowed them Open Consent, which means that if any of the tests reveal an abnormality and they need further information, they'll be keeping some of Zoe's DNA to use for testing, rather than having us come back and poking her again. It also means that if they decide to do research on metabolic conditions or chromosome deletions in the future, they'll use a smaple of her DNA as an anonymous donor for the research. Anything to find a treatment or cure.

So, 7 tubes and 1 syringe of blood and 1 urine sample later, we are back home waiting for our followup appointment in July. They also tested me for PKU, although it's unlikely. They just want to rule it out to be on the safe side. If the tests reveal anything abnormal, then we'll be getting in beforehand.

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It's Saturday January 30th, 2010 around 10:30pm. In a little over 36 hours, we will be sitting in Clinic 9 at Sick Kids Hospital in Toronto, Ontario awaiting the start of Zoe's metabolic testing. If you refer back to her MRI report on Zoe's MRI Scan page, her MRI suggested an underlying metabolic condition. That is what has led us to this day.

We have no idea what we're in for, no idea what we're up against, no idea what to expect, no idea what they're going to do to this little girl. All we know is that she'll be tested, and tested again, and probably tested some more until we find out a cause, or find out that we cannot find a cause.

I hate putting her through this all. After last Monday night while recovering from the flu, having to hold the poor girl down while the nurses extracted 8 tubes and 3 syringes of blood, and spent 4 hours forcing her to drink fluid, just to get enough urine for 3 urine samples, I'm very much leaning towards ending these tests on her if this round of testing doesn't reveal anything to us. She's just a little girl, she's 3 years old. I don't want her to grow up thinking that hospitals are her life. I know she's going to live a hard life as it is, but I want it to be as normal as possible.

Keep her in your thoughts and prayers, please. We will update again when we come home.
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