Lissencephaly Awareness

11/18/2022

Mackenzie's weekly report, they absolutely love having her there. I guess they will call us with her next admission date.

11/17/2022

Mackenzie had a busy day at pratten yesterday, she stood in the standing frame for 10 min in the morning and another 20 min in the afternoon. She still doesn't like her tummy time but they were able to get her to do it for 3 min with an iPad in front of her lol. Her child life specialist said there is an app she really likes where you tap the screen and it opens the barn door to let the animals out and I guess Mackenzie caught on to that really quickly. She had a good lunch as well. Keep rocking it big girl, the sky is the limit!!

11/15/2022

Mackenzie had a really great day again today, Dan the physiotherapist said she was able to stand in the standing frame for 12 min which is really good for her first time. She had Mac n cheese for lunch and really liked it almost ate the whole bowl they said. She had a 30 min nap today. Found out today that Mackenzie has elevated triglycerides and low HDL, not exactly sure what it means but the pratten Dr is going to pull up the report and let me know tomorrow what it means.

11/14/2022

Mackenzies first day of pratten went well she wore her afos for 2 hours and did really well in the floor seat they had her in. There was a switch that was connected to a light tower and she wasn't sure at first and realized when she hit it it would light up. For lunch she had potatoes, veggies and beans, she wasn't sure of the texture because she is use to smoother purees but did really good. Dan made some adjustments on her stroller so she fits in it better. They said overall she is a very happy girl except she doesn't like tummy time which we already knew lol. They had pics fpr us to take home too!!

11/14/2022

This beautiful lady starts at pratten one complex care tomorrow. I know it will be good for her but this mamma is having a hard time because I have only met these people once. I have been waiting a long time for this intensive therapy but now that it's here I'm nervous.

10/14/2022

Mackenzies new billie shoes came in. Not only are they super cute but the top unzips all the way making it easy to put them on with her braces. They also gave her a pair of AFO socks to go with them.

10/03/2022

Had our tour with pratten today which went really well!! they all loved mackenzie and can't wait to start working with her, she starts on Nov 14thand I think it will be great they will be doing intensive therapy. Also visited Dr. Danby today and her hip xray came back great and she increased her acid reflux meds. She has a bit of granulation tissue and yeast around her gtube site so she put silver nitrate on it today and a new prescription cream. Mackenzies head is still small and she weighs 35 lbs. She is 2ft 11 she has had a growth spurt lol.

09/28/2022

I guess I'm suppose to hold Mackenzie her whole life!! The government doesn't pay for her to have a supportive seat for her to sit in on her own and neither does my husband's private insurance. Definitely not fair to Mackenzie.

09/19/2022

Just wanted to share that we raised $1267.30 for RMHC. Thanks again to everyone that was able to make it out to support our little Mackenzie and her rare condition.

09/15/2022

Tried out this standing frame today and Mackenzie seemed to like it. It will be ordered and we should see it in 2 or 3 months.

09/09/2022

09/08/2022

We had a really good turnout for our first lissencephaly awareness day!! Thanks to all that were able to make it out and honor our little Mackenzie. Thank you to all that helped make this day happen, George Finch, Aaron Neeb Jennifer Hatch, Laura from BIA all the local businesses and of course the wonderful people in our community. Until next year❤️❤️

09/08/2022

RIP Queen Elizabeth such a sad day 💓

09/08/2022

Lissencephaly Awareness has arrived!! We will see you all today at 3pm at Macnaughton Park, can't make it to the walk that's okay there is a BBQ at the parkette by BMO starting at 4pm. Remember to show off those Lissencephaly colors (purple or blue)

09/07/2022

Can't wait to see everyone tomorrow!! I would like to thank everyone that has supported us and made this day possible....
Municipality of South Huron
Mike Hansen- independent
Paula- Foodland
Melissa Wilde Beimers - Wilde Roots Salon
Laura- Exeter BIA
Rob Reid- Exeter McDonald's
Jennifer Hatch
Patty Masnica
Tri StarTaekwondo Exeter - Andre Ducharme
George Finch for helping me get this started, this day wouldn't have been possible without all of you.

09/06/2022

Mackenzie got her new legs today!! Who else but cocomelon❤️❤️

09/06/2022