Anyways, now that’ I’ve told you all about me, let’s talk about Ali. She’s doing AWESOME!

She is managing to stay very healthy this winter. She has learned to walk with the assistance of a pediatric walker and is loving the independence. She loves to walk up behind me and hug my legs and look up at me from down by my knees and say, “mmmmmmmmmmmmmmmama”. She melts my heart! She has taken to scooting around a bit on her bum rather than rolling and yesterday she scooted up to me while I was sitting in a chair and she pulled up on my pants! I know it’s hard to believe and I wouldn’t have believed it myself if I hadn’t seen it. Jason even got to see the big event (so I have a witness). We went to the pediatrician last week and he was amazed with our girl.  I’m so grateful for that. I’m so happy that she is doing so well. I have huge hopes for her! She is truly an incredible person and I am honoured to be her mmmmmmmmmmmmmmmama!

Wednesday, December 21st is Ali’s birthday! It’s been two years since that cold snowy night when Ali was born and it’s been two years since we almost lost her to a drug overdose, soon it will be two years since we found out that she has Costello Syndrome.

We have a new normal now, a normal that often doesn’t feel normal at all but for us it is. Ali has come so far in two years, way further than we expected. A lot of children with Costello Syndrome don’t make it to their second birthday, it’s hard to imagine a world without Ali but there were days when that was a real possibility and now she’s a happy, loving little girl with so much to give to the world! I want to shout it from the roof tops that my baby is two, she’s a big girl now! She made it!

The past two years have been years of extremes. I’ve gone from being so worried about test results that the world has started to spin and fade away from me to being so overjoyed by one of Ali’s incredible firsts that all I could do was cry. I know that the worries will remain, I still worry every single day that something may take her from us but I also look forward to the firsts that will come, to the look in her eyes when I grab her from her crib in the morning and to the way it feels when she wraps her arms around me and squeals with delight when I pick her up.

Happy Birthday to the strongest little girl I know. I don’t know what we did to deserve her but she couldn’t be more special to us!

Ali has been working very hard on learning all her developmental skills. She now scoops food out of a bowl and is able to bring it to her lips for a little taste. She still doesn’t swallow anything I don’t think but she certainly has demonstrated that she has the motor skills to feed herself when the time comes! Ali is working very hard at learning to walk. She can walk quite nicely while holding on to Mommy’s or Daddy’s hands and she really enjoys practicing! She will never crawl, she’s much closer to walking than crawling so we can skip that step. We are fairly sure that she could stand unassisted for a few seconds (while wearing her ankle foot orthotics) but she is quite nervous about trying and as soon as we let go she reaches for whatever she can grab. She could probably stand all afternoon while holding onto something (like the coffee table). Ali has also gained an appreciation for colouring. She will quite happily sit in her high chair and “doodle” with Madi for a few minutes, although she also attempts to eat her markers.

Ali has recently been assessed by the CNIB again and they thought that there was dramatic improvement in her vision. She responded properly to simple commands, made good eye contact, showed off her fine motor skills and throughly charmed to therapists. I think her finest moment was when they showed her pictures of other children in simple poses (like hands on top of their heads) and Ali imitated them! I almost couldn’t believe my eyes!!!!! The vision therapists said that Ali is using her vision to its fullest extent and that she’s doing great!

We’ve also had cardiology follow up recently. Ali’s heart condition appears to be stable.

Ali went to her pediatrician last week. I didn’t really have any concerns so he played with Ali and her favourite doll for a few minutes and then he looked at me and said, “My God, is she ever high functioning!” I think with that comment he made my year! This is the same doctor who led us to believe that she’d probably be fairly low functioning so to hear him say that was amazing! I am so proud of my little girl and of how well she’s doing!

Today Ali learned a new game. I decided to play hide and seek with her. I would run and hide around a corner and yell, “Hey Ali, come find me”. Then I would hear the tell tale sounds of Ali running in her walker and soon she would be parked right in front of me screaming with delight! Madi joined in and the three of us played hide and seek for well over half an hour. It is so important to appreciate the little things in life and having Ali participate in a family game of hide and seek was awesome!

Ali will be admitted to the hospital on the morning of December 12th for a sedation MRI. We need to check the structure of her brain to make sure that there is no crowding (Chiari 1 malformation) or hydrocephalus. This procedure will require either a 1 or 2 night hospital stay because of her risk factors when undergoing sedation. Please keep her in your thoughts! We also have an ultrasound coming up on December 20th to screen for cancer. Please keep ME in your thoughts for that because I’m a little paranoid these days! 🙂

I think there was a day, not too long ago that I would have been able to shake that off but I can’t do it now. I guess that means that I’m not the person I used to be which is fine, I already knew that. I spend so much time trying to concentrate on the positive with Ali, and I think for the most part I do a pretty good job of it. Obviously I spend a lot of time worrying about her health, I can’t find any positives when I’m worrying about cancer and heart failure. But when people ask how she’s doing I always list off all the good things and all her successes. It’s not really in my nature to say anything else. I don’t need to be fighting back tears in the grocery store while I tell someone how much I struggle. That lady left me crying in the grocery store parking lot with my children simply because she didn’t bother to think before she spoke. I know a lot of people would say, “Who cares? You don’t even know her so let it go.” but it’s not that easy. I can’t even explain to you why it’s so difficult for me to let those words go because I don’t know. All I know is that I have a beautiful, trusting, happy baby that may very well be judged her entire life by what she can’t do and by what she’s not and I don’t want that for her. People need to look at all that she is and all that she has to give! I don’t have any other way to explain it.  I’m glad she’s too young to understand what that lady said but what happens when she’s not anymore? How do I protect her from that? She’s been through so much and she has so many challenges and yet people still feel like it’s okay to judge her and us. We walk in shoes that most people wouldn’t want and the hardest shoes of all belong to Ali. She’s very, very different but different isn’t ugly and I hope that she can  grow up knowing how beautiful she is inside and out. It’s those features that make her so obviously different that remind me every day of what an amazing little person she is. I’m just going to tell her every day how beautiful she is and hope that she always believes it.