Sunday, December 19, 2010

Thursday, December 16, 2010

She finally holds her cup

Only on the bouncy chair or in someone's arm...but hey its a start...and here is the proof (and by the way, she drank not just 1 but 3 oz holding the cup on her own). Inch by inch we slowly get there..

Sunday, December 12, 2010

Choo Family Newsletter 2010

So every year we do the usual Christmas tradition of sending out holiday cards with a family newsletter. A glimpse and summary of the major events for the year. This year, writing the family newsletter was a bit more of a challenge as I tried to write a balance piece of work that doesn't damper the holiday spirit yet truthfully reflects the year of crazy activity. So this year, I've decided to publish my annual newsletter on this blog instead of sending it out with the holiday card. I figure if you are following this blog, then anything I mention in the newsletter isn't really a shock. However, for my friends and family that aren't following this blog, receiving a christmas card and newsletter from me may draw too many questions. So to all my family, friends and followers of this blog, here is my yearly family newsletter (along with some recent pics):

The Choo Family Newsletter

Dear Family and Friends,

Only when we thought things couldn’t get any busier, it does. This year has been an extraordinary year full of surprises and challenges big and small.

Kayla turned 3 year this year and woke up to her bedroom fully decorated with streamers and balloons. Celebrating the big day with family and friends and a Dora cake, she continues to be our special little Valentine. Lauren celebrated her 1st birthday in August and marked the milestone by taking her first crawl just the week before she turned 1. She blew out her 1st candle on her Very Hungry Catepillar themed cake and wolfed down an entire cupcake.

To celebrate Kate’s dads 60th birthday, the Law family went down to Florida to celebrate the momentus occasion. Sharing a 4 bedroom house, we had a great time at Disney, Seaworld, and just lounging by the pool. Kayla’s favourite Disney ride was the Dumbo ride and Lauren enjoyed watching Shamu at Seaworld. Both kids enjoyed spending time with their cousin and the grandparents, and it was a really great trip to just "get away". 

This year Kayla took her first steps on the ice rink, her first jump on a trampoline and scored her first soccer goal. She continues to have an abundance of energy and has been eager to try new sports and activities. We have been most amazed by her co-ordination and balance on the ice rink. After a few short months, she is independently skating, slowly, but steadily, and can’t wait to play hockey with Daddy this winter. Kayla also loves to dance, bake, do puzzles, do arts and crafts and sing pop songs by Usher and Lady Gaga. In her letter to Santa this year, she asks for a set of tools and a toolbox so she can help Steve fix things and an iphone.

Most notably this year, Lauren had her cleft palate repaired. While recovery felt long, she was a trooper and is now eating away on her solids and sucking away on her sippy cup. As we continue to put together the pieces of the puzzle, Lauren continues to amaze us in her own way. She is one of the most laid back, content and cuddly babies we know. She adoringly loves her sister Kayla and enjoys wrestling (or being wrestled), reading books, listening to music, and cruising around the house. She detests naps, naps and naps. Her favourite foods include yoghurt, berries, baby mum-mums, cheerios, and bread. She is enjoying her Saturday morning music class and looks forward to sledding and playing in the snow with her sister. 

Kate and Steve both started a new job this past September. Kate has returned back to the healthcare sector and Steve is on a new business venture with his Dad.  We look forward next year to seeing the girls grow up and becoming even closer friends. We thank all our friends and family for their continued thoughts, prayers and words of wisdom. You have all helped us along our journey and we hope the ride hasn't been too bumpy. 

Warmest wishes this holiday season,
Choo Family (Stephen, Kate, Kayla & Lauren)

Wednesday, December 1, 2010

Updates, updates, updates

Its been awhile since I've blogged (work has been super busy and 7am meetings mean I am in bed before 10pm)!

So let me give you a quick rundown of what's new with little miss Lauren.

We met with Lauren's surgeon for her 6 week post-op check up last week. The follow-up went well and Lauren will not need any follow-up surgeries. Yay! Her weight - She is in trouble. The little monkey has not gained weight over the past few months and is now plateauing on the growth curve and starting to dip. So we are now on a rampage of squeezing as much food in her as she'll take and turning to high calorie foods and fortifying her milk with table cream...the same menu Kayla was on at this age, but Lauren's weight issue is unfortunately more severe than Kayla's.

Lauren's had a hearing test (with her ear tubes) and she didn't do very well. She is hearing, but she is very inconsistent reacting or turning to sounds and noises. The next step for us, if her hearing continues to be inconsistent, might be hearing-aids. But the audiologist wants to see her again next month before we decide what options we have.

The wait list is over and we finally reached the top of the list for PT and OT. Lauren started seeing an Early Intervention PT and will be seeing her every 2-3 weeks until she is either walking independently or is six years old. The PT has a PhD in PT, is very thorough, prepared and organized, and Lauren seems to be taking to her well. We will also be meeting with Lauren's Early Intervention Occupational Therapist this week Friday for the first time.

And lastly speech....Lauren is starting to make more noises as a first tiny step. I've found a private speech therapist and we'll be going in for an assessment early next week and hopefully we can get Lauren some regular weekly sessions starting December. So with PT, OT and ST, Lauren is one busy little girl. And hopefully, if things work out, she'll be starting pre-school next Fall as well.

Other than that, Lauren is doing well. Still very content, she adores her big sister Kayla and seems to be watching her alot more. She's smiling and laughing alot more now, especially with Kayla, which always brings a smile to my face.

Kayla has picked up skating really well and has just finished her 2nd block of lessons. She is eagerly awaiting to go skating with her Daddy. She continues to love gymnastics and can crop across the high bar with ease. She continues to be witty, super energetic, and just fun loving with everyone she sees.

Christmas is quickly approaching. The tree is up, the stockings are hung..only the presents remain. Oh how I miss shopping for presents on maternity leave...weekday shopping was the best. I am dreading the crowds, the hustle, the packed parking lots and the long line ups. And now, not only do we have gifts for our friends and families, I need to get little somethings for Lauren's therapists and my co-workers. 24 days of shopping left....

Monday, November 15, 2010

Promises to Myself

I promise to myself to stop worrying so much about Lauren.
I promise to myself that I should spend more time with Lauren doing her therapies, even if they are a drag and often feel like we aren't getting anywhere with them.
I promise to myself that I really need to start that 1 year photo book for Lauren (second child syndrome)..she's already 15 months!

Well its been a quiet November so far. Lauren is 5 weeks post op now and is finally starting to eat and drink alot better. She's still on chunky purees and soft foods, but we'll slowly move her onto table food as her eating improves. Physically she is still a bit weak, but getting stronger by the week. Over the past couple of days, she is finally starting to crawl around a bit more and is slowly taking on the stairs again. We saw a speech therapist two weeks ago regarding Lauren's lack of progress in the expressive and receptive speech language area (even with her ear tubes). It wasn't a real big surprise when we were told Lauren is severely delayed in this area. We kind of knew it, but its always a bit sad when its confirmed by a specialist. So we are back to basics in this area and begin ploughing away again.

On the upside, Lauren is now starting to vocalise when she doesn't want something taken away from her. If she's holding onto something she likes, she'll actually protest and cry out when you remove the object away from her hands. An inchstone, but we'll take it! So Lauren is now being bullied every day by us as we take things away from her just to get her to vocalise! Kayla continues to be Lauren's best friend and best therapist and is constantly echoing any sounds or noises Lauren makes (part of Lauren's speech therapy is have her noises or sounds echoed back to her to instigate a conversation). Its awesome....we find it a drag sometimes, copying Lauren's little noises, but Kayla loves doing it and thinks of it as a game. We feel that Lauren is now becoming more aware and attached to her sister as she will now cry if she see Kayla leaving the car to go to school. Its the cutest and sweetest thing.

Kayla continues to enjoy skating and is learning to skate backwards. She's learning french at school and now knows her colours in french. And she told me today at McDonalds that when she goes out with Daddy to McDonald, she doesn't ask to go pee because he can't take her to the "lady's room", and that the boys washrooms only has potty that hang on the wall, so she has to hold her pee in until she gets home. Gotta love it!

I promise to myself to sit back and enjoy the small moments with my two darlings (oh yeah, and the hubby too)
I promise to myself to do what I can, ask for help when I need it, and realize that all the worrying isn't going to change anything...the cards have been dealt, its how you play the cards...sounds like a familiar post, eh?
I promise to myself that as long as the family is happy and healthy and smiling, I will be ok

Sunday, October 31, 2010

On Top of the Mountain

Shortly after Lauren was born, I started wishing that I could move my entire family to live in a rainforest, or the top of a mountain top, or into a small house in the middle of a rice field, or really anywhere where we could live alone in a our own bubble world, without expectations, judgement or stereotypes from society. Where Lauren could be Lauren, where she could lie around all day if she wanted to. Who cares if she couldn't sit up, who cares if she didn't want to sit up. Who cares if she wanted to lay there all day and just stare into the blue sky and white clouds. Milestones? What milestones? And what would be the rush to achieve them? We would live a carefree life, free of worries of "is she walking? is she talking? is she doing this, is she doing that?" The kids would play outside in the river or maybe they would be making igloos, and I wouldn't care about anything, just as long as they were happy. As long they were happy, as long as we were all happy, that would be all that matters.

Looking to get to this state of desired happiness has proved challenging for me at times. I've tried clearing my mind, focusing on the positives, reading self-help books (even a book entitled "The Happiness Project"...yes there really is a book entitled this and no it didn't help, well it was kind of boring so I stopped reading it), going out, talking with friends, reading blogs, not reading blogs, shopping, shopping and more shopping. Everyone else in the family is already there. Happy, go lucky, positive...those are the words I would use to describe a 3 year old, a 1 year old and Steve. I convinced myself that the only way I could be happy, would be to get away from everything....hence why living on the top of a mountain sounded so appealing. Unfortunately, I wasn't able to convince my darling husband that this was a good plan, so we've stayed put where we are and I've been on a quest for happiness back down here on earth.

This weekend I watched a few children coo and cuddle Lauren like she was the most awesome thing in this world. They didn't know about her medical background nor did they know that she has some undiagnosed vision and hearing issues or that she is delayed. They sat with her, spent time with her, tickled her, held her hands standing and tried walking with her. They talked to her like she understood what they were saying to her, they were in awe when she smiled at them, they were amazed that she could stand holding onto a couch. They asked the innocent question, "can she walk?" I answer "no". And they say "oh, ok" without a thought in their mind and go back to giving her their 100% attention. They touch and remark how tiny her feet are and how adorably cute she is. They tell me they love her, that she's so sweet. They think she is perfect. I felt like we were all on the mountain top.

And it was their interaction with her and my ability to finally "step back" and see the larger picture that hit a spot in my heart. She is perfect. On the mountain top she is perfect, so why can't she perfect down here on earth? Because we are surrounded by doctors and therapists who are treating her because something is "imperfect" about her. She is "imperfect" because the stupid milestone charts and baby books tell me so. She is "imperfect" because I constantly ask "when will she do that" or "why doesn't she do that". She is "imperfect" because of me. Because of my outlook, because of my worries, because of my desire for society's definition of perfection. She is "imperfect" because I keep looking at her in a way that is different when I look at Kayla. And could all of this, this view of Lauren being "imperfect" be at the root for my happiness quest?

There have been so many days that I dream about living on that mountain top. There have been so many days I would just close my eyes and wish that I would wake up the next morning on the top of the mountain, family and happiness hand in hand. But yesterday I realized, while watching those children enjoy Lauren and giving her their unconditional love and attention, that happiness is right here in front of me. I don't need to go to the mountain top to find it. Its right here before my eyes.

So today, I just enjoyed Lauren for who she is. No observations, no mental notes to self, no flashbacks to where she was developmentally a week ago, a month ago, 3 months ago....No stupid therapies. You don't want to crawl, then don't. You don't want to talk, then don't. You don't want to look at me or listen to me, then don't. I just enjoyed her. Played with her, made her smile. And you know what? I felt like I was on the mountain top.

Wednesday, October 20, 2010

1 week post op

Well its been a week since Lauren's palate surgery. She is pretty much back to her normal self meaning no naps, wanting to be held, and curiously moving slowly around the house (with the arm braces). But she refuses to drink any milk!! I don't know if her mouth is still swollen from the surgery or if its teething or a milk strike, but I am going out of my mind figuring out how to get her back onto the bottle. She'll eat the soft foods, but when we bring out the bottle, she shuts her lips tight. The grandparents have now resorted to spoon feeding her milk which takes forever just to get 1-2 oz in her and Steve and I are syringing milk into her mouth nightly while one of us pins her down. She bats at the bottle, shakes her head furiously, spits the milk in our face and puts up a huge fight. By the end of it, she is a ball of sweat and we have milk everywhere. Tonight we finally just gave up and put her down for bed with no milk. She's lost alot of weight since the surgery which is another reason why I'm stressed. She has a big belly, but her arms and legs are so skinny now, it looks awful.

Other than the milk issues, Lauren is doing well. The ear tubes don't seem to have helped with her hearing (or speech), so we'll be going down to the hospital late November to meet with ENT and audiology for some more hearing tests.

On a final note, we learned a few days ago that Lauren will now be seen by a PT that is funded through the government! Yay! We've been on the waitlist for 7 months. I can't imagine where Lauren would be today if we hadn't digged into our own pockets and started with a private therapist when she was 6 months old. Canada's medicare system - universal access and publicly funded, but look what happens...children waiting for months and months for therapies. And what happens to those children whose parents can't afford to pay for private therapies?  Furthermore, even though Lauren will now have a publicly funded PT, we don't know how many therapy sessions she will get and at what frequency and for how long. We'll find out in November when we meet with the new PT for the first time for Lauren's initial assessment.

Thursday, October 14, 2010

Chapter 1: Palate Surgery Done

Lauren had her palate surgery this past Tuesday and was discharged today from the hospital. We ran into some respiratory issues following the surgery, but she's a trooper and took well to some new medication that was prescribed by the respiratory therapist to open up her airways and is now at home. The surgeon said the surgery went well and she had a U-shaped missing palate (as opposed to a V-shaped). He had to make some additional incisions and stitches because of the width of her missing palate, and expects her to be a swollen and sensitive in the mouth for a little while.

She's still a bit tired and groggy from the surgery and medications but otherwise is doing fine. We have been giving her tylenol and morphine at home to help manage the pain. She has been eating soft solids like yoghurt and baby foods the past two days and is slowly sipping her milk. She would rather eat from the spoon than drink from the sippy cup, so we are gently free pouring her milk into her mouth. Below is a picture of Lauren in her arm restraints, which she has to wear 24/7 for 3 weeks to prevent her hands from going in her mouth and pulling or infecting her stitches.

Steve and I are glad that the surgery is done and that finally this chapter of the book is closed. But many more chapters on the Lauren story awaits for all of us ....

Monday, October 11, 2010

Palate Surgery Tomorrow

I can't believe its already Thanksgiving. Lauren's surgery is tomorrow at 11am. 14 months ago, Lauren came into this world with a surprise for all of us. Sporting a cleft palate (complete absence of hard and soft palate) at birth, the little pea has taken everyone she knows for an emotional ride over the past year. 1 in 600 are the odds of having a cleft palate baby. Seems like small odds now that the number has lingered on us for awhile. From learning to drink her milk without the ability to suck and to eat solids without a rooftop in her mouth, these are some of the challenges she faced and has overcome.

The surgery will take about 3 hours and she'll be in the hospital for a few days for recovery. Following this, she'll have to wear arm restraints for 3 weeks, 24 hours a day, to prevent her hands from going in her mouth. Its going to be a LONG 3 weeks for us. Following the surgery, 6 weeks post operation, she'll return to the hospital for some follow-ups appointments.

I'm excited about the surgery tomorrow and I believe that everything should go smoothly. While we still have a long road ahead of us, I hope the palate repair and ear tubes will shed some light on her hearing issues and give us a better sense of direction to head in. But no matter what happens, Lauren will continue to grow and develop as best she can, guided by her family, friends and therapists.

I give thanks this Thanksgiving for having wonderful, supportive and loving family and friends. Its been hard on us,  but I know that its also hard for those around us as well. Not knowing what to say, how much to say, how much to ask, how much not to ask. Its a difficult situation to be in, for all of us, but I think we are fortunate to have an amazing support system to share openly Lauren's smiles and tears. I also give thanks for being blessed with a wonderful husband who loves Lauren unconditionally and is an optimistic and relaxed individual. Steve sees Lauren as perfect the way she is and really grounds and levels me out. And finally, I give thanks for two beautiful daughters who have given me a life I would have never imagined. I learn from them every day, big things and small things, the good and the bad. They have shaped me, softened me, and have made me a better person. And I give thanks to them.

Thursday, September 30, 2010

The Good and The Bad and The Ugly

Let me first announce the good. Lauren eyes are fine. Over the summer, she completed two more eye tests and has seen 2 more optometrists who say her eyes are functionally fine and that she is seeing. We asked about CVI (based on the results of her first eye test which pointed to delayed cortical response time), and they said for now they don't see the impairment. Her vision has improved over the past 6 months, so the optometrist thinks that her vision was probably just late to mature. So that is definitely a relief...I was so scared. At one point I even watched videos on youtube of kids with CVI and how they lived...I know, I'm a nut. She'll go for another eye follow-up in Feb of next year.

Lauren is getting stronger every day. As part of her physio, we have been working on getting her to crawl up the stairs in our house. We started this exercise even before she could crawl and it was like pulling teeth. We would put Lauren on the first step and she didn't know what to do. She wouldn't even put her hand on the next step above her, let alone pull her leg up onto the next step. And we would use cheerios to coax her to move even just an inch. It would take her forever just to get herself up a few steps and most of the time, we were pulling on her pants or arms to help her up. And now, a few months later, she's doing the stairs all by herself. Slowly, but surely, she'll make it all the way up to the top, even without a spotter behind her. Yes, it takes three of us to help Lauren climb the stairs. You've got me and Kayla in front of her at the top, cheering and encouraging her, and you have Steve behind her, her safety net in case she falls back. A family team effort that has paid off.

So along with the stair climbing, Lauren has been working on her crawling. The physio says she has weak arm/shoulder strength which is why her crawling is so slow...although its a lot more fluid and faster than a few months ago. The physio said the only way she'll get faster and stronger is for her to keep practicing her crawl. And so the little caterpillar inches around and continues to dusts our floors clean.

While her gross motor skills have improved, speech is still not moving along. That's the bad part. No babbling (except when she is crying) and the only person she seems to have a conversation with is with her 5 month old cousin! Her attentiveness is still not very good but hopefully it'll get a little better with ear tubes. After the surgery, which has been confirmed for Oct 12th, we plan on getting Lauren a regular speech therapist to see her. Hopefully this will help her or maybe she'll naturally hit a spurt soon with her speech, just like she did with her gross motor.  Either way, I'll keep my fingers crossed. Fine motor, slow as well, and no major progress to report. Both these areas, according to her chromosomal abnormality, are expected areas for delayed development. I just wish I knew how "delay" is quantified and all the therapists and doctors keep saying is only time will tell.

And now the ugly, she is still refusing to nap, still. Its been a month now, and nap time is still non existent. I don't know how a 1 year old can go all day without a nap. The good part is that at least she goes to sleep at night without a fuss and she is sleeping a bit longer at night. But still, all day without a nap drives me crazy.... I need a nap for goodness sake!

Thursday, September 16, 2010

Two Awesome Things

So I'm reading a book called The Book of Awesome. It shares life's little awesome moments such as getting the entire row of seats on an airplane to yourself or filling up an ice cube tray and making it back to the freezer without spilling any of the water. The author writes about all the thousands little things that make you happy and makes you realize that if you enjoy the simple moments in your life, you will be happier. So it got me into thinking of what awesome things make up my day. Off the start, two immediate things come to mind:

1.Picking Kayla up from school and being greeted with a huge welcome of “Mommmmmyyyy I missed you”...My favorite part of the day is picking Kayla up from school. I walk into the school, and from the classroom door, quietly say “Kayla”. Kayla, with her super sharp ears, hears me, turns, and quickly runs to me, from across the classroom, with open arms, shouting “Mommmmmmyyyyy, I miss you”. She grits her teeth and lips as she give me the biggest hug possible. And all the other kids in the classroom are watching us. But the best part is, Kayla doesn’t care. She doesn’t care they are all staring and wondering. She doesn’t care that she has diverted everyone’s attention from their activity. She just knows that I am here to pick her up, and she misses me. Awesome.

2. Opening up the door to Lauren's room first thing in the morning and being greeted with a huge smile....My other favourite part of the day is going into Lauren's room when she first wakes up in the morning. She is always standing in her crib (another awesome thing), just eyeing the door, waiting for it to open. And when I open the door, I get the biggest smile ever. A smile of recognition, a smile of please take me out, a smile of I want my milk. A grinning 8 tooth smile, accompanied by a stream of drool. Steve and I always fight over who gets to open the door. Sometimes when we fight over who gets to open the door, and it ends up being a physical race. The feeling you get is like opening the door to a prize on a game show. And although we know what's behind the door, everytime we open it, we are always in awe. Awesome.

Wednesday, September 15, 2010

Choo Family Pictures - Part 1

Here are some updated family pictures, courtesy of Diana's Photography


Surgery Date

So we have a potential surgery date: Tuesday October 12th! The hospital is going to confirm with us later this week, but this was the message we got on our answering machine when we came home today. I can't believe we finally have a date, we've been waiting so long for this. We are excited to get her palate fixed, but I'm sure as the date gets closer, we'll be nervous, anxious and scared. During the palate surgery, Lauren will also be getting ear tubes put in.

We'll keep everyone posted.

Wednesday, September 8, 2010

Lauren's Song

So I first heard this song in the car, and when I listened to the lyrics, I knew it was Lauren's song.

Just The Way You Are - by Bruno Mars

Tuesday, September 7, 2010

1 Twig and 1 Pig

I can't believe it's already September. The summer just flew right by. Kayla started her new pre-school today without any issues. The whole family saw her off and we expected her to shed a tear, or say "don't go"....but NOPE, she just walked right into her classroom, turned around, and said "bye", and was off playing with the other kids. We were left standing at the door, sad but yet so proud that she is so independent and her own little person. At least when I picked her up, I got a huge hug and a million smiles and tight squeezes! And guess how her lunch went? Horrible. Today was the first time that I packed her a lunch (I previously always purchase the school meal plan, but the meal plan wasn't available this week). I packed Kayla a slice of leftover pizza, 5 baby carrot sticks, 6-8 small cubes of watermelon, and a drinking box. And what did my 25lb 3 year old eat for lunch? 2 carrot sicks, all the watermelon and that was it. Yup. She eats like a twiggy model....

Lauren, on the other hand, is eating pretty like a little piggy these days, but sleeping awfully. She has decided that 6:30am is the new wakeup time, and that 10pm is the new bedtime. With only 8 hours of sleep, she still fights all her naps, and on some days, won't even take one. Hopefully this is a phase, that won't last too long cause I am  getting tired. Her days are now at Grandma's house filled with lots of attention and love. Steve has been taking her to her therapies, thankfully he has a flexible work schedule, and often the grandparents will tag along to get some ideas of things they can do with her at home. Progress continues in most areas, but of course is slow. She is now consistently babbling MAMAMA, but only if she is whining or upset. When she is content or happy, she says nothing. Strange I know. So the pea remains quite quiet, even in the presence of her super loud sister Kayla. But she SMILES. Oh how I LOVE THAT SMILE. I don't care that she's not walking, talking or tick tocking...that smile lights up my day every day.

Friday, September 3, 2010

Our Littlest Hero

Just wanted to share a peek at some professional pics we got taken of Lauren. A huge thanks to Diana's Photography. Diana was wonderful to work with and I would recommend her services to all families. She volunteered her photography services as part of the Littlest Hero Project. I should have more pictures to share in the upcoming weeks.

The link to the Littlest Hero Project is posted on the sidebar of this blog. After I read through all the stories of the children that have participated in the Littlest Hero Project, I realize how blessed we are, and how we should never take anything for granted. Although I often feel that Lauren has her challenges, I realize in reading the stories on this website, that Lauren is actually fortunate in a lot of ways. Everyone has their own set of hurdles and there are a lot of kids who have even larger and bigger challenges to overcome. Its eye opening to read these stories and it shows you how resilient and strong kids can be. And because of their shining strength, they become our littlest heroes - kids we admire, because despite their obstacles, they do the best they can and often achieve things we never imagine. 

I remember once watching Dr. Phil and he was lecturing to an overweight man about his weight. And he said to the man, "you've got legs, why don't you exercise by running, climbing stairs, walking etc?". The man said he was too lazy. And Dr. Phil said something to the likes of, "There are kids out there who are born with no legs, or who lost their legs, or who are unable to use their legs and they would give their right arm to have legs, to be able to walk, run and climb. So you have no excuse not to use your legs and you owe it to them, to use what you have to its fullest potential. You have blessings you probably aren't aware of and you are fortunate in ways you probably never thought of."

This episode of Dr. Phil has stuck in my mind for years. His words were just so powerful and so meaningful. You never think of you legs in that way...and how there are people who don't have legs. And how everything that you have from your fingers to your toes is really a blessing. You take for granted that everyone is born with 10 fingers and 10 toes, but there are always the exceptions, and there will always be people who will never be able to feel water running through their hands or the sand inbetween their toes. Lauren is my Lauren. I am thankful for her 10 little fingers and her 10 little toes. 

Count your blessings, all the big ones, and the little ones too.

Thursday, August 26, 2010

Almost end of summer

Where has the time gone?

We went for Lauren's 1 year checkup and she weighed in at 15lb 10...she is even smaller than Kayla at 1 year!! I really didn't think that was possible. Kayla was 16lb 4 at 1 year. But, for those of you who know Kayla, you will probably recall how we had to distract her with toys, a song and a dance at every meal just to get her to eat. With Lauren, we just let her eat what she wants to eat...and as it turns out, she doesn't want to eat much. We are now doing a similar diet that we did with Kayla: adding table cream to her milk, avacado, almond butter, and overall just trying to give her more high calorie foods. Here we go again. Food is such a struggle with these two girls! I have pretty much given up on Kayla. I weighed her the other day and she has gained 1 lb in 6 months! Guess she'll be wearing the same clothes next summer as this summer...for the record, Kayla is still wearing a few pair of shorts this summer that are size 12 months and she is 3.5 years old. Lauren is still in her 3-6 month onsies and she is 1 years old. My two peanuts :)

I can't believe summer is almost over. Kayla just finished her week of skating lessons.  Steve got her a pair of boys hockey skates (he refused to have her in white skates!), and by the end of the week, she was moving on the ice independently and was getting up to standing from sitting on her own. Kayla is now enjoying her last days of summer before she goes full time to preschool in September. She loves having sleepovers at Grandma's place (because they let her watch tv before bed), and she is singing along to pop songs like OMG by Usher.

Lauren is doing well. She is smiling alot these days and LOVES to play with herself in the mirror. She gets very excited when she sees herself and will interact with herself. She makes faces at herself and bangs on the mirror. It the cutiest thing! For the first time, I couldn't care less about fingerprints! Lauren is becoming more mobile and is now crawling more steadily and with more confidence around the house. She is also now cutting her 8th tooth and has become the worst sleeper in the house. She cries every night for 30 min to 1.5 hours. She stands in her crib, eyeing the door, with tears streaming down her cheeks and cries and cries and cries. There have been nights where Steve, Kayla and I have fallen asleep with Lauren still crying. No rescue from mommy.

The vision consultant continues to study Lauren but mentioned at her last visit that of the 40 kids on her case load, Lauren is the most baffling. Still a mystery that little girl. We went for another eye test this past week and should hear back in about a months time on the results. We'll keep everyone posted on this. Still no palate surgery date either. PT and OT are going well. Our PT said she wished more of her clients were as strong as Lauren...we thought that was such a nice compliment. And of course counted our blessing on this one. 

Works for me starts next week. I'm excited but nervous. I hope I can keep feels like forever since I've worked, especially in a corporate environment. Lauren is going to be spending her days at Grandma(s) house. I think it will be a nice change of scenery for her. Kayla will be in school full time with ice skating lessons on Mondays after school and ballet on Saturdays. Lauren will be doing music classes on Saturdays. Steve - hockey (i'm rolling my eyes as I write the words). Me - i promise to floss, that's about all I can commit to....All in all its going to be a busy Fall for all of us.

On a last note, I do want to genuinely thank all our family and friends for your support over the past year. I think Lauren has brought alot of us closer together and has truly showed us what is really important in life. Its family and close friends that really count in the end. You are the ones that listen to us in time of sorrow, you are the ones that give us a shoulder to cry on, you are the ones that shed a tear of joy when we share a proud moment of Lauren's progress with you, you are the ones that embrace Lauren as your own, you are the ones that are cheering for her on the sidelines. Lauren has made alot of gains over the past 6 months and we wanted to really thank everyone for helping her to get to where she is at. Every gesture you do, whether its a simple wave and smile at her, a fun game of peek-a-boo, helping her to walk, or giving her first taste of ice cream, it means alot to us and we just wanted to take the time to say thank you. So thank you again.

Friday, August 13, 2010

Pulls To A Stand

Lauren greeted us standing up in her crib for the first time two nights ago. We were in complete shock. She was crying and crying at night and finally we decided to go into her room to check up on her, and there she was, just standing there, holding onto the crib rail for dear life, with streams of tears going down her face. Yay! Another small achievement to celebrate! Now that she has learned how to pull herself upto a stand in her crib, she can't seem to figure out how to get down on her own..which means we were in her room 5 times last night, putting her down to a laying position from standing.

Because of Lauren's recent achievements in the gross motor category over the past few months, she is actually improving and catching up for her age! When she was 6 months old, she wasn't rolling, reaching and was barely sitting. She could do tummy time for only 5-10 seconds at any given moment. She was marked as below 5th percentile for gross motor skills and was diagnosed with low muscle tone by her doctors and we started PT. Now at 12 months, she has moved upto between 10-25th percentile for gross motor! We are so happy that she is getting stronger and stronger. She still has alot of work to do on her core muscle area, but we hope with the motivation of food and the constant wrestling with Kayla, Lauren will continue to build her strength and grow.

Wednesday, August 11, 2010

My Hungry Caterpillar turns 1

Lauren turned 1 years old this past Saturday! We had a backyard celebration with family filled with balloons, streamers, good food and cake! I made Lauren a cupcake cake (will post pic soon once I find my camera) of the Very Hungry Caterpillar. Not sure where the idea came from, I just saw it when I was surfing the internet, but when I did come across it, it was perfect. Lauren is a hungry little caterpillar (she loves to eat, but she just seems to have a hard time putting on weight), who inches around (literally). One day, when she is ready, she will come out of her cocoon and I know she will blossom into a beautiful butterfly that everyone will marvel at and admire. Lauren had a good day on her birthday. She loved eating her cupcake, icing and all. And she was surround by family and loved ones, what more could she ask for? Her sister Kayla helped her to blow out her candle and open her presents. Lauren was full of smiles for everyone on her birthday. She had a good day. And so did we.

Friday, August 6, 2010

Lauren is turning 1 and my hair is getting grey with worry

Lauren is turning 1 this Saturday. Its hard to believe that a whole year has gone by. Honestly, I think its been the longest year of my life. A year filled with dr. appointments, therapies, questions and very little answers. 

Lauren continues to develop but remains a big puzzle. One of my biggest worries continues to be her vision. Her vision issue(s) still remain "unsolved". I'm not expecting a solution, but at least an answer would be nice. We went to see the optho, who looked at her eyes and said functionally they are fine (yay), but is she interpreting what she is seeing we don't know. So he ordered yet another test and said the last test we had doesn't really tell us much. So here we go again, with more tests and more waits. Lauren "sees", as evident by her reaching for what she wants, but there are just so many inconsistencies. The more I read about CVI, I am sure she has some form of it. We asked the optho about CVI, who wouldn't comment on this diagnosis until more tests were conducted. I am frustrated about the lack of answers and the more I "observe" Lauren, the more baffled, scared, and helpless I feel. I just don't understand her.

And I guess it doesn't help that she is behind in meeting her milestones, so its hard to tell if she is just behind or this is the furthest she will get or if its something else altogether. Or maybe this is the way it is suppose to be based on her genetic makeup.

So my days continue to be filled with worries. I go to sleep worrying about Lauren and wake up worrying about Lauren. She is the first and last thing on my mind, every single day. When I think of Kayla, I smile and cry with joy because she makes me so happy. She really does. I wish that I could feel this way about Lauren, but with so many unknowns it scares and worries me. I wonder if the days of worrying will ever cease. I don't really every worry about Kayla anymore. I am confident about her, that she will be everything I dreamed of her to be. Lauren...again, I really just don't know. I hate feeling this way, and that I look at the two girls so differently and have very different aspirations for them. I want one to be "ok" and the other to be prime minister. 

So many nights, I wish that things had turned out differently. When I see other siblings, playing together, talking together, laughing together, smiling together, I wish that this will be Kayla and Lauren. It just seems so far away right now. Kayla loves Lauren unconditionally, and treats Lauren no different. I'm not sure why I have such a hard time doing this myself. Maybe I need the mind of a 3.5 year old. A simple, uncluttered, mind who just accepts Lauren for who she is. Kayla is fantastic with Lauren. She plays (its more like wrestling) with her, feeds her, helps her. The best part is, she always remembers her sister in everything she does. She always remembers to say bye to Lauren and to give her a kiss when she is leaving the house, when she does something, she always says "I have to get one for Lauren too" and she always asks "where is Lauren?" when she doesn't see Lauren. She is really the most considerate, thoughtful and sweetest person I know...and she's only 3. I'm really glad that Lauren has Kayla in her life. And I'm really glad that both Steve and I have Kayla in our life. I don't know where'd we be without our Kayla. 

So that's whats been on mind for the past couple of days. 

Birthdays are suppose to be fun, a time to celebrate, a time for smiles and laughs. But at the same time, they make you think of the past, the present and the future. 

Thanks for reading and listening, I feel a bit better now. Now on to make Lauren's birthday cake for the big day...

Thursday, July 29, 2010


Lauren is crawling...OMG! We went to for her OT session on Tuesday, and the therapist said she thought Lauren would be crawling soon. I was in disbelief, and told her I didn't think she was there yet, and probably would give her 6 weeks. The OT said she thought it would happen over the next few days...we were both like "yeah right". And sure enough, that night, Steve came up to me and told me Lauren crawled. I asked if he was kidding, he answered no. I asked how far? Usually she'll just do 2 steps and then collapse. He told me about 5-6 feet. And sure enough, Lauren is now crawling. Motivated to crawl only by food, but hey she is crawling!! Just a week shy of her first birthday and she is finally mobile!!

Lauren's crawling is significant to us on many levels. First, it shows that with early intervention therapy, commitment in practicing the exercises, and with ALOT of PATIENCE and love, she will get there. Was it the therapy, or would she have gotten here anyways? I believe the physio helped tremendously and can be attributed to her success in crawling. Secondly, the reason why I'm always freaking out about things is the stupid genetics literature we received said that their study of babies did not achieve crawling until at least 18 months and that it ranged from 18 months - 3 years (with some babies never crawling). I know ppl always say the literature is worse case scenario, but if you think about it, its somebody's worse case and whose to say it may not be mine? Thirdly, we are super happy she is crawling because this will help her to build her upper body strength, overall body co-ordination and will hopefully balance out her left and right side (she seems to have a preference and more strength on her left side). 

So what's next for Lauren? Hopefully i'll be able to report before 6 months time, that she is walking. Again, it seems right now we are a long ways off (she is very imbalanced), but we will just take it one day at a time. 

So my next step is start working with Lauren in the area of communication, language and socialization. I'm going to talk to her doctor about this, but she is really far behind in this area, and progress has been non-existent to date. Overall she is a very quiet and content little girl. She babbled for a week, then stops, then picks it up again a few months later. Odd I know. Right now, she is not babbling. She was babbling earlier this month, but has stopped. We will figure it out. Again, one day at a time.

Tuesday, July 27, 2010

A video

No its not a video of Lauren, but a video about a dog. Get some tissues, its a tear-jerker. It serves as a reminder to me that Lauren will show us the way to what she is capable of doing and where she will go. She will continue to surprise us in her own way and will do amazing things in her life that we've never dreamed about or imagined she could do.

Wednesday, July 21, 2010

Moving forward for Cheerios

I have made the discovery tonight that Lauren is motivated by her cheerios. When I put them at a small distance, she is taking the plunge from sitting onto her belly, and then attempting to move FORWARD to get them, which is huge, since she would only before go backwards on her tummy before. She isn't crawling, just kind of slithering forward on her belly (sort of) - and to be quite honest, she only moved a few inches forward. Its a painful sight, because she is trying so hard to get the cheerios but is frustrated with her own lack of strength to get herself moving where she wants to go. She isn't very co-ordinated, but at least she is moving in the right direction and it finally looks like I have found something to motivate her to MOVE. I had tried every single toy and object in my house and she would just stare at them and reach, and if she couldn't reach for them from her sitting position, she would just simply give up. I think it will still be awhile, as I can see she still needs to work on building her tone and strength in her core and upper body, but hopefully this is the start to her getting mobile! 

My peanut's hearing and vision

An update on Lauren's hearing: We went took her for another hearing test at the hospital this week. She has a moderate hearing loss in both ears due to fluid build-up. It is a temporary loss, thank god. She will need get ear tubes put in when she goes for her palate surgery (which we still don't have a date yet), and then the hospital will do another hearing test after that. So all in all good news, and we hope with the ear tubes this will help with her speech.

The vision remains a puzzle. We had another visit this week from the vision consultant who is still puzzled with her vision. Lauren does see, as she is grabbing and attending to toys and objects of all colours, textures and sizes. She doesn't show any of the classic CVI symptoms, so right now, there isn't any vision exercises we can work on. So why did we get a test result of delayed cortical visual response time? What does this mean? Functionally, she seems right now to be ok. Her attention span isn't the best, but because she is behind in meeting her milestones, the vision consultant noted her attention span is developmentally appropriate for where she is at. She still has some issues with looking at people and her surroundings, but I guess we are just at a wait and see point. We have an appointment with the optho next week, so we look forward to hopefully getting some answers.

Other than that, not much is new with Lauren. She had her weight check with the doctor and she is about 15 and 1/2 pounds...little peanut. We'll see if she can beat her big sister Kayla at the 1 year mark (Kayla weighed 16lb 4 at 1 year). She is maneuvering around on her bottom 360 degrees, but still won't really go and take the plunge towards crawling. Once she knows a toys is out of her reach, she just pushes herself back into sitting from her tummy. Smart little cookie.

Steve's brother is getting married this weekend, so we are busy getting the house ready for some family who will be staying with us. Kayla is going to be a flower girl and she is excited about getting her hair done up and wearing a beautiful white puffy dress like a princess. I am trying to keep her free of bruises on her face this week - it actually is quite a challenge because she constantly runs around and bumps her head and face into everything! Kayla continues to enjoy her mini chef classes at the community centre and is just a delight to be around. She surprised me the other day by changing herself out of her pajamas and into her own clothes all by herself. She is becoming so independent and I am so proud of her. She is full of energy and is really excited about the wedding and seeing her Vancouver cousins! I look forward to the wedding...and having a drink (or two or three or four or five).

And a little update on myself, I got a new job! I decided to get back into healthcare, so I'll be working at a Toronto hospital as a project manager. So no more Lug...I will miss the people (and the perks of discounted bags), but I look forward to making a difference and improving the quality of patient's lives. I'm a little nervous about going back to work, and how all of Lauren's therapies are going to get co-ordinated, but I'm sure we'll figure something out...

Thursday, July 15, 2010

My new sorority sisters

After much contemplation, and on advice from my doctor (who probably thinks I'm a basket case), I met up with a small group of moms of special needs kids tonight. I have been on and off about the whole thing of meeting "others" - do I really want to know what its going to be like when Lauren is 4 or 5 years old? what if their kids are doing great and mine isn't? what if nobody understands? what if .... well no more what ifs. 3 hours later, I leave Timmy's with a list of therapists, daycares and other contact info for services for special kids. Who knew there were tax write-offs for therapies? And who knew there are people called respite workers who specialize in caring for children with delays? It was great gabbing with a bunch of ladies who "get it" because they are "in it"and live it every single day. We talk about the frustrations with the wait lists for everything, different learning techniques, our husbands (the good and the bad), and of course, our children. They have kids that didn't walk till 2, who are just learning to talk in 3 word sentences at 5, who are on gluten-free diets, who bite and hit their moms out of frustration or aggression. They understand immediately my worries, my fears, my tears. While all of their kids were older than Lauren (most were around the 4 year mark), I immediately recognized that everyone's situation is different, that every family is different, that every child is different and that everyone has a different way of dealing with "it". It was really nice to meet a lovely bunch of ladies and hear their stories. Its nice to know that we are not alone and that there are other families out there who have unique situations like ours.

A poem for my new sorority sisters ....this is us!

By Maureen K. Higgins

Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores. I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters.

"Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.

We were initiated in neurologist' s offices and NICU units, in obstetrician' s offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.

All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.

We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world.

We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and psychiatry.

We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if that means walking away from it.

We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us on line.

We have tolerated inane suggestions and home remedies from well-meaning strangers.

We have tolerated mothers of children without special needs complaining about chicken pox and ear infections.

We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.

We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours.

We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.

We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it.

We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.

But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.

But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars."

Monday, July 12, 2010

To accept or not accept?

My chromosomes may be different
But my feelings the same
I laugh and I cry
And I take pride in my gains
I was sent here among you
...To teach you to love
As God in the heavens
Looks down from above
To Him I'm no different
His love knows no bounds
It's those here among you
In cities and towns
That judge me by standards
That man has imparted
But this family I've chosen
Will help me get started
For I'm one of the children
So special and few
That came here to learn
The same lessons as you
That love is acceptance
It must come from the heart
We all have the same purpose
Though not the same start
The Lord gave me life
To live and embrace
And I'll do it as you do
But at my own pace

I found this poem on an internet board of moms with special needs kids. "That love is acceptance, It must come from the heart"....I try, I really do try, to accept what has come, what is coming, and what may come. Its been almost a year, and you'd think that after 11 months, I would have accepted everything for what it is, but unfortunately (and maybe humanly), I still have days where I find it very difficult to accept Lauren for who she is. I just want her to be better, in every single way possible. But I know that there are some things I won't be able to change. I think as long as I keep wanting this, it makes acceptance very difficult. I believe I will get day. 

Thursday, July 8, 2010

PT, OT, Vision, and a monkey jumping on the couch

So here's how things went this week for Lauren:

Lauren's physio therapist said we need to work on getting Lauren's core muscles (abdominal area) and lower trunk stronger and she needs to gain a better sense of balance. The next step for Lauren is crawling at this point, but her weak core muscles always cause her to collapse when she is on her hands and knees. I think it will be awhile before she gains this strength. I remember when she first sat. It took a few months for her to gain alot of strength to sit well independently. At first when she sat, she could only face forward. She couldn't even turn or rotate her trunk to look at anything on the side, otherwise if she did, she would topple over.It is only over the past few months that she is sitting more comfortably with balance and can confidently reach for things to the side without falling over.

We also saw her occupational therapist this week who pretty much had the same observations. Crawling is the next logical step. Also we should work on getting Lauren to pull up on furniture. Again, a strength and balance issue of the upper body. Crap, I feel like we are training her for the olympics..what comes so easily for most kids, she has to work so hard to just get there.Its frustrating and tests my patience every day...but I guess as long as she gets there in the end, who cares how long it takes her to crawl, walk, run? As long as she gets there....i'll keep my fingers crossed.

The worst part about therapies is they always send you home with "homework". Exercises to do when at home. And every time we have a PT or OT appointment, they always ask how the exercises are going.....kind of like when the dentist ask if you've been flossing. You debate for a minute whether to tell the truth, that you floss "kind of", some days not at all, and that the night before you go for the appointment you make sure you brush and floss like there is no tomorrow. Well its the same with the exercises. We always have the intention of "flossing" every day, maybe even twice a day, but some days we get lazy, and some days we think "what's the big deal if we skip a day", and some days are just so busy, we just don't have time. And then when the dentist announces you have a cavity and proceeds to pry your mouth open with clamps, you think "crap I should've flossed". After seeing my dentist and the PT and OT this week, my summer resolution to myself: I will floss and Lauren will do her exercises at least once per day. I don't know how many times I've made that promise to myself to floss every day, but now that its tied to Lauren, I think she will keep me to it.

The vision therapist was pleasantly surprised by Lauren when we saw her.She primarily observed Lauren playing with different toys that she brought and remarked that Lauren was seeing better than what she had expected (from the paper result). She says that Lauren does not exhibit all the common characteristics of CVI from what she observed (e.g. most kids with CVI would not be able to pick up a cheerio off a white background and Lauren is able to do this and Lauren does look at an object and grab it, whereas some kids with CVI will look at an object and then turn their head away from the object and then grab the object). Lauren does like to gaze at shiny objects, reflective surfaces, and especially at lights and fans and we find she has difficulties looking at people, faces and observing her surroundings and environment. The vision therapist will continue to do her observations/assessment every 2 weeks for the rest of the summer so we will keep everyone posted.

I took Lauren this week to a playgroup called Wiggles and Giggles. Thankfully there were only 2 other babies there, a 5 month old and a 9 month old. Lauren really enjoyed it. What a difference from a few months ago. I almost cried when Lauren started reaching up in the air to try and touch the bubbles from the bubble machine...she would have never done this a few months ago.I know its hard to believe, but a three months ago, she would have just sat there or lied on the floor and just stared blankly at the bubbles (and I would be wondering whether she notices them or not) and her hands would have been at her side just resting. Finally she is showing more interest!

So as you can see, its been a busy week and in between all this, we've been trying to keep Kayla busy. She was so bored, she even went with me to the dentist and hair dresser...anything to get out of the house I guess. Kayla, our monkey girl, took a huge fall yesterday off the back of our couch (because she was jumping up and down on it) and landed on her face against the kitchen floor. There was so much blood streaming out of her mouth, I honestly thought she had knocked a tooth out. Thankfully, it was just a deep cut on her lip. And what did she do today? She jumped off the back of the couch again...when will they learn?

Sunday, July 4, 2010

My weekend with the girls alone

Well I survived the weekend with the two girls alone. Steve was off in Montreal for his brother's stag leaving me behind with the two kiddies. Things went pretty well. Friday I took the girls to High Park and met up with a friend of mine and her two kids. I managed to survive 4 hours trekking throughout the park without a double stroller (thankfully Kayla is so small that she was able to squeeze into my friend's Chariot stroller (who says a double stroller can't hold 3 kids?!)). The kids had a great time: we went to the petting zoo, they played in the castle and splashed in the splash pad. Kayla soaked all her clothes at the splash pad and so she sat in the car buck naked with only a towel around her all the way home. What a little monkey! Saturday, Kayla had soccer and then we were at another friend's house for some more water fun in the backyard. Sunday, Kayla went swimming in the morning at a local pool, we made pancakes, eggs and bacon for breakfast with family, and then we watched Toy Story at home with a big bowl of popcorn. Now it is Sunday night and both girls have been sleeping since 8:45pm. I tired them out! Phew. The weekend is over.

It was nice to spend time with just the girls this weekend. Kayla is quite a character, her personality is really coming through, she makes me laugh all the time. She is an awesome big sister to Lauren and to her cousin Bree. She fed Lauren solids twice on the weekend (which allowed me to wash the dishes and get things cleaned up) - although she jabbed the spoon so far into Lauren's mouth that she almost gagged and threw up. She is picking out books for bedtime (2 story books for Lauren and 2 for herself), and she managed to squeeze toothpaste onto her toothbrush herself and brush her teeth herself without too much of a mess. This weekend Lauren had real chicken for the first time which she loved (she's only had baby food chicken before), she sat in a high chair for the first time (which I am super excited about, because the many times I tried before, she always seemed to slouch alot so I opted to put her in a booster seat instead), and she seems to enjoy sitting in the splash pool. Its funny, I spent a lot of time this weekend with a few kids who are very close in age to Lauren. I am surprised at myself, but I did not feel jealous or unhappy or resentful. I actually felt really happy, proud and appreciative of all the big (and small) things her little friends have accomplished, although Lauren seems like miles away from some of their achievements. Perhaps its a sign that I have comes to terms that I am in Holland. Although I do always think about Italy.

So what's up for this week? We have physiotherapy and a visit from the vision consultant this week. I am eager to see how both appointments go. I am also taking Lauren to a Wiggles and Giggles class for 4-12 month olds. I am a bit nervous obviously. I know she is behind and although I am not suppose to compare, sometimes you just can't help it. I hope I will be ok. I want to take her because I think she needs some outside stimulation. Being trapped all day in the house with me doing exercises and watching Kayla isn't that fun. I actually took Lauren to this same class when she was 6-7 months old, and I remember watching all the other babies of all ages reaching for things while mine did nothing with her arms, not even showing interest in lifting them up....I remember how scared I was and how envious I was of all the other babies. Now, at least I can go back and show that Lauren can reach too...a little late, but she reaches for what she wants!

Tuesday, June 29, 2010

Welcome to Holland


by Emily Perl Kingsley

When you're going to have a baby, it's like planning a fabulous vacation trip -- to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland

Monday, June 28, 2010

Its how you play the cards

So we got an unofficial diagnosis of cortical visual impairment (CVI) or sometimes known as cerebral visual impairment. After learning about what CVI is and its characteristics, I realized that Lauren did fit many of the classic symptoms. CVI is a neurological vision impairment and is something that can't be fixed with glasses or surgery. Of course, I am sad again. I feel bad for baby Lauren, to not be able to see properly and to not hear properly, the world must be such a confusing place for her. I would be so scared. I can't imagine how she must feel or what she is feeling. To have two of your senses impaired in some way, it must be hard to make sense of everything around you. I wouldn't know what to do but just eat my bib...which is what she does!

So what to do now? Well, we are going to start working with a vision consultant who is going to evaluate Lauren's vision from a functional perspective and then we'll have to start "training the brain". The good news is that her vision should improve with time. How much it will improve, we don't know. But simple things like perhaps showing her objects against a solid dark background instead of a busy background can help her "see" better and process the information easier.

Why did this happen? We have no idea. We have no family history of any of this. Why us? We have no idea. I guess why not us? And maybe it makes no difference. The cards have already been dealt at this point. Now its about how we play the cards. We are getting Lauren all the help we can. We'll just have to wait and see....

Friday, June 25, 2010

A perfect beginning to summer

Lauren sat up on her own! It happened on Father's Day. I put her on her tummy and went to wash the dishes, then when I came back she was sitting up. I was in disbelief! I kept asking Steve if he was sure he didn't touch her and he kept insisting he didn't. Then the next day, my dad found her sitting up in the playpen after a nap. And finally today, she did it again, this time right in front of our own eyes, with Kim, Caralen and Keith as witnesses too. We were all so happy. We made her do it 10 more times, just to make sure it wasn't a fluke. You should have seen us all cheering and clapping for was very memorable.

On a different note, Kayla has announced this week that she no longer needs the potty training seat to go pee, she wants to sit herself up on the real toilet seat by herself. She is getting to be such a big girl! Kayla's last day of school was today. And then its 60 days of summer at home...I hope I can survive. I've signed her up for a variety of activities to keep her busy including soccer, mini chefs, skating and arts&crafts. Of course she'll also be engaged in household activities such as laundry sorting, weeding, watering the flowers, dusting with the swifter duster and making lunch!

An update on Lauren - We are scheduled to see the eye specialist in late November and the hearing specialist later this summer. I can't believe the waits are so long. Even when we see them, who knows if this will only mean more tests and more waits. Lengthy wait times, the results of a public medicare system. But what other choice do we have? Buffalo?...So in light of all that has happened, and the odds of everything that has happened, we decided to buy some lotto max tickets for tonight's draw of $50 million..maybe, just maybe, we'll hit the odds on a winning ticket. And then maybe we will be heading to Buffalo...

A funny remark by Kayla this week - I went into her room to wake her up for breakfast. When I walked in, she said "mommy you scared me" (because I had quickly opened the door and she was startled)..."you are like a ghost". Ha ha. Love it!

Wishing you all a wonderful weekend. And happy 60th birthday Choo mom!

Thursday, June 17, 2010

An early shout out: Happy Father's Day

To the #1 Daddy of Kayla and Lauren: Kayla and Lauren are very lucky to have a fun loving, silly dad like you. Without you, there life would be full of drills, commands, and not so fun stuff with their police-like mom. Kayla running to the door everytime you come home from work, Lauren smiling and drooling at you adoringly from afar and near, both girls snuggling in bed with you on a Saturday morning, these are the pictures I have of you with our girls. You've taught Kayla how to ride her tricycle, how to make silly faces, how to topsoil the lawn. Lauren always looks forward to spending time with you every night from bath, to bottle, to book, to bed. While we watch both girls grow up, they will amaze us in their own way I am sure. Continue to be strong, optimistic, fun loving, and nurturing, the girls need it and so do I. Happy Father's lets see how long before you read this on this blog.

Sunday, June 13, 2010

Finally the purple elephant in the room is out

So after reading my blog on Lauren, you are probably wondering what you can do to help.

JUST ENJOY HER. Please don't treat her any differently than you would with any other child. We want Lauren grow with confidence and high self esteem that she can do anything she sets her mind to achieve.

A good friend of mine the other day told me a story of a disfigured child who didn't know she was disfigured. Growing up, her family and friends treated her all the same, as if she looked perfect. When she grew up, only when she went to school did she get approached with the question "why do you look like that?" She would answer confidently, "look like what, this is the way I just am". Another good friend gave me the advice of "when you go back to work and look back at Lauren's 1st year, what will you remember? Will it be the countless appointments, the tears, the disappointments, the sadness?" I answered YES. "Then you are not enjoying her" She then remarked that she will always remember Lauren's as being super smiley. I guess what she said really hit me. So I try not to stress and enjoy the things all moms should enjoy such as the first day she found her toes and they made it to her mouth, the first time she reached for something with her hands, the first time she ate solids.

So just enjoy her. Play with her. Smile with her. Interact with her. Please don't test her. Please don't "observe" her or "study" her. I know its hard not to as we all try and understand her needs, but let's leave that up to the experts to do, although I do catch myself watching her at times too and wondering. I can show you some simple exercises or positions that you can do to aid her muscle strength while you are playing with her (as you can see, I squeeze in physio wherever and whenever we can!).

Some of you have know tidbits, some of you have known for awhile, some of you are finding about all this right now. Don't be afraid to ask us questions. We'll be happy to chat. Its actually good for us to talk to people, it helps clear the air and gets things off our chest. You know me, I like to be open and honest. The past 10 months has been a roller coaster of emotions, but I think we are now at the point of finally being able to speak aloud and acknowledge the purple elephant in the room. There were so many times we wanted to say something, but unable to cope with the information ourselves, you can imagine how difficult it is to share the news with family and friends. We didn't want disappointment, judgement, or grief. Of course I wish things had worked out differently, and wonder countless nights what went wrong. But the truth is, this is the way it is, there is no point crying over spilt milk. It is what it is. So let's just move on and help her, enjoy her and grow with her.

Saturday, June 12, 2010


So where to start about our second addition? She was born in August 2009 in Markham, Ontario. Labour was pretty easy, about 15 minutes and out she popped. We were told immediately after she was born that she had a cleft palate. We were shocked. Neither of us even really knew what a cleft palate was. Immediately the nurses showed us how to feed her with a special bottle called the Haberman, where you pretty much squeeze the milk into her mouth (because she can't suck the nipple on her own very well). We both picked up how to use the new bottle fairly quickly and went home with our new bundle of joy. 2 days later after insufficient weight gain, Lauren was admitted to the hospital where she was diagnosed with Pierre Robin Sequence (PRS). Her cleft palate was a complete hard and soft palate absence. She had some minor respiratory problems (which were quickly addressed through positioning her in a certain way when she was sleeping in her bed) and was noted to have a small chin.

We met with the plastic surgeon and the cleft feeding team at Sick Kids Hospital in Toronto. They informed us that Lauren's PRS case was quite mild and that likely she'd be scheduled for palate repair when she was 12-14 months old. It seemed so far away at the time.

A few months down the road, we were referred to the genetics department at Sick Kids to see if they could uncover a reason for Lauren's cleft palate. After doing some genetic testing, they discovered that Lauren had a difference in her chromosome make-up. This was likely the cause for her cleft. But because of this chromosome difference, we could possibly expect some developmental delays.

Fast forward to today. Lauren has come along way. Although she has been achieving her milestones a bit later than normal, she is getting there... just on her own time! We are so proud of her. We have a physiotherapist and occupational therapist helping her weekly, and we'll soon be adding a speech therapist to the team as well. She is on her own developmental curve and will continue to develop at her own pace. It is frustrating, yes. Especially when you have a type A mom like myself who wants everything done her way (meaning on time, with little patience for delay or assistance). Well boy has this changed me. Lauren has taught me the virtue of patience. I am now a better mom because of Lauren.

We recently found out that another reason for Lauren's delays is that she is not seeing and hearing very well. We had noticed something was not "right" with her early on, but could never pinpoint exactly what it was. After months of waiting for referral for testing by specialists, and months of waiting for an appointment date, and then followed by months of waiting for the results and we finally received the results a few days ago from our pediatrician. Hopefully soon (if there isn't another long wait), we will be meeting with Opthamology and ENT to better understand her visual and hearing impairment and the treatment/therapy options available.

So how do we deal with all this? I won't lie. It's completely over whelming. This is a completely new world to us. Now I have added words like Early Intervention and Special Needs to my dictionary. It is frightening, yes. And yes we are scared of what the future holds for her. But we do know that she has a very loving family of parents, sister, grandparents, uncles, aunties and cousins who are all going to help her out along the way. Help her to achieve what she is destined to achieve. She is loved unconditionally by everyone around her and has blessed our family in so many countless ways. We enjoy her each day and live our lives day by day. We have learned not to needlessly worry about the future as who knows what the future holds for anyone?

With her 4 little teeth and faucet like drool, Lauren is a very happy baby. The only time she gets mad is when we are doing her exercises (she protests and it's the cutiest thing!). She loves playing with Kayla (especially pulling on her hair) and Kayla loves to entertain and feed her. Lauren recently moved to the sippy cup in preparation for her surgery (we still don't have a date) and recently we were told that we need to start trying to fatten her up (like giving her table cream in her milk) because she is on the small size...I'm not too worried as Kayla was only 16lbs at 1 year, and Lauren is currently about 14 and a half pounds at 10 months....we have tiny girls... it's in the genes!!

Thank you for listening.

Welcome To My Blog

I've thought about doing this for awhile now. As we all get busier and busier this seems like an ideal way to keep everyone posted on how our family is doing. I'm a pretty blunt writer, a tell it as it is person, so most of what I write will be to the point. If you ever want to chat about anything I share, we are only a phone call or email away. Thank you for following my blog.
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