Hello friends and family! I’m sorry we have been slacking on the blog lately. Things have been busy busy, but going so great at the Heasley house, which is why I feel like we haven’t posted in a while! It’s easy to write when things aren’t going well, but when they are going well we just keep on livin life!

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Hattie has been growing like a weed! We have her 9-month appointment at the end of the month, but I’m guessing she is around 14 pounds now! She is getting stronger every day, and making huge improvements during physical therapy. She grabbed a toy the other day, and her therapist Beth and I looked at each other and squealed with excitement. I like to think that we are taking the longer more beautiful route of life with Hattie. We get to soak in every tiny thing she does, and celebrate every “inch-stone” that she hits. She also lifted her head up during tummy time! It was only for a couple of seconds, but it was such a huge step for her... SHE IS GETTING SO STRONG! Beth recommended that we begin Occupational Therapy once a week as well, so we just started that last week. So now Hattie sees Miss Beth for PT every Tuesday, and Miss Kelly for OT every Wednesday. PT has been focusing on gross motor skills and overall muscle tone through things like sitting up, lifting her head up, eventually walking, etc. With OT, Miss Kelly will hone in on the finer motor skills such as grabbing things, using her fingers, talking, and learning to feed herself. We are also looking to get her into Music Therapy soon, because Hattie girl loves her some music!

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Rare disease day is in February 28th!! This day is near and dear to our hearts because there are only about 55 reported kiddos with Hattie’s chromosomal deletion of 1q43q44. “The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives. The campaign targets primarily the general public and also seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases. Building awareness of rare diseases is so important because 1 in 20 people will live with a rare disease at some point in their life. Despite this, there is no cure for the majority of rare diseases and many go undiagnosed.”

If anyone would like to participate, and help us spread awareness, here are the details! David and I will be painting our faces, and posting a picture on social media. Don’t have face paint? Use lipstick or makeup! OR just post a picture with one of the hashtags!

https://www.rarediseaseday.org/

#RareDiseaseDay #ShowYourRare #MyRare #1q43q44

And if you want… use the hashtag #HattieBlake so we can see all of your posts J.

Thank you so much for supporting us, and following Hattie’s journey! We love you all!

Abby & David