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.

No comments:

Post a Comment

Related Posts Plugin for WordPress, Blogger...