July has been one action packed month! I mean seriously, action packed! It was like a movie with Matt Damon and lots of guns and fast cars…. Or it was like me running all over from hot humid AZ doing a billion different things all the way to Northern Colorado doing a bazillion things. Very …
I may be dramatic. May be. I don’t know. I have heard it all my life, Kim you are so dramatic. I remember my mom mocking my sick stomach walk to my aunt when I was little. I remember falling for a laugh. I remember thinking I would surly die when I had strep throat. …
Lily suffers from CDKL5 disorder. No new news to all our friends and family, but it is June and this was our first time acknowledging June as CDKL5 Awareness month.CDKL5 disorder sucks. Really really sucks. Takes away everything you every thought of your child’s future. It takes hopes and dreams and reconstructs them into something …
I always want to sing like Annie “In NYC…. ” I hope you all do the same after reading the title. Oh I love Annie!So I have been back from NYC for a week now and wow I am back to a very busy life. I can’t believe I was able to skip out of …
Spoiler Alert! Cherie Dell comment #22 you are the winner!!!! But you didn’t leave me your email so can you please email me at knothdurft at gmail and get me your info and I will love to get you that necklace! 🙂 Thank you everyone!!! Let’s do it again real soon!
In honor of Rare Disease Day for NORD, celebrating their 30th Anniversary this year next month, I would like to get some awareness out about the rare disease that has turned our family upside down.For my family and friends who often read this blog already knows LilyAnna Blu suffers from CDKL5. CDKL5 is a gene that …
Unfortunately I heard what I knew I would hear.Lily went from 23 degrees to 45.We are going to brace her with a softer brace with pretty lax rules when she is home so she can roll around on the floor still.Got rx to go back to wheelchair clinic, I called to schedule, but gal was …
I am so excited to share “Living with CDKL5” from the AdaptiveMall site!Click here for Lily’s storyA few months back I saw the whole “living with” series on the site and emailed them to ask how we can take part and they sent me a questionnaire and asked for some pictures and I was thrilled …
Ever wonder what your 9 year old daughter is thinking? Has she ever gone away for a weekend leaving you longing to hear her voice again? Have you ever wondered what really made her smile? Ever think back about when she was an infant, the way she made eye contact with you while you fed …
Calm Amongst the Chaos 