The paper was available first thing Sunday morning and we just happened to be at the grocery store just after they opened and that is when the first person approached us to talk about Ali. Since then there have been many phone calls of support for Ali, many offers to help and many people coming up to us and wanting to talk to Ali and ask questions or offer best wishes. Ali loves it! She loves to meet new people and she greets every single person with a huge smile.

Ali is an amazing little girl and we love her for exactly who she is but having a child that is so obviously different can be a very lonely feeling for a parent. You love this child so much and it hurts when people stare or look away from that tiny little toddler that takes up so much of your heart! But this week things are different, people are not turning away from her but instead they’re saying, “Hi Ali!” and they’re stopping to talk to her and instead of wondering what the heck is wrong with her, people are actually asking questions and giving us the opportunity to explain exactly who she is and how great she’s doing.

So I want to thank our dear friends at RE/MAX , one week into “Pennies for Ali” they’ve already made a huge difference and we are very, very grateful.

Ali had a repeat hearing test a few weeks ago and it was determined that her hearing is not a huge concern right now. The test showed some minor problems with hearing but we will repeat in 6 months and decide at that time if we are going to do further testing.

Ali has been working hard on sitting independently and is now getting quite good at it. She can sit for longer periods of time and is now working on pulling her knees up underneath her while on her tummy so that perhaps one day she might crawl.

Ali’s favourite new skill is shaking her head for “no”. To be honest, I’m not sure if she knows what it means but she sure loves to do it! She is officially a toddler because she now says “no” to everything!

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When Ali’s doctor told me the results, he said that he was sorry that she had Costello Syndrome but that he was glad that it wasn’t something worse and although some days it’s easy to forget, we know that yes, it could have been so much worse.

I can’t believe it’s been a year already since we got the official genetic diagnosis!

Ali is doing really well. She can now sit unassisted for quite a while and she rolls all over the place to entertain herself! Tomorrow we have to go to Edmonton to do a hearing test because Ali failed the last one. It seems like there’s always something to look into. Ali also recently had an endoscopy procedure done to check for malignant tumors of the nose, throat and neck. She took it like a champ and the results were normal. We’re going to be doing endoscopy once a year to help to reduce the risk of advanced stage tumors in her ears, nose and throat.  This gives me a bit of piece of mind, just a bit, because the tumors terrify me.

Two weeks ago Ali had her press debut. Our local news paper did a full-page story on Ali and since then we’ve gotten a lot of supportive comments from those in the community that weren’t sure what was going on with Ali until they read the article. I really prefer when people ask questions or say hello rather than staring at my daughter. The staring hurts my heart.  I’ve had a lot of people tell me that I’m an inspiration, that makes me a little uncomfortable. The way I see it, I do what any mother would do. Ali is the inspiration! She’s amazing!

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Ali can now officially sit unassisted for a few minutes!!! We are so proud (and relieved) that she has achieved that milestone. She still prefers to lay down to play but we’re working on that!

Ali has also learned to stand up while holding onto a low coffee table for about a minute. She can’t pull up but once we position her at the table she is happy to stand until her little legs give out on her.

She is getting pretty mobile, she wiggles and rolls all over the place. Once she hits the hardwood, she really travels.  I have to watch that I don’t step on her because she no longer remains exactly where I put her.

We had a meeting with Ali’s feeding team last week and she is now 17lbs 12oz and is 69.9cm in length. She has officially dropped off the bottom of the growth curve for a child of her age but she is still growing and gaining weight at a decent rate.  We know that she’s going to be very small, they key is just to keep her growing.

We are planning to take Ali to Chicago in July to the International Symposium on Costello Syndrome. We are looking forward to meeting with medical professionals and other Costello families from all over the world. The symposium is being run by the Costello Syndrome Family Network. The CSFN is a charity that is near and dear to our hearts.   We are so thankful for this opportunity.