We had an amazing opportunity a couple weeks ago to meet several other girls and their families that have Rett Syndrome. When I was first invited to this, I was really unsure about whether or not I wanted to go. I know that might sound strange but hear me out. Before this, we had never …
Our family was about one week back to activities and school things when we were HIT with a brutal cold and fever! It was so not fun. It was so bad even Mark got it – which is saying something because that man has an immune system of STEEL! But it was just a wicked …
Happy 3rd Birthday to this sweet little girl! Lydia has grown SO MUCH this last year! I’ve been looking back at her second birthday and it just takes me back. Lydia is the bravest person I know. She is strong. She is resilient. She is kind. She is silly. She is absolute goodness to her …
This last month Lydia got her first wheelchair! And she LOVES it! Several people had warned me that this was going to be a really emotional experience, but it really wasn’t – or at least, it was only in a really positive way! Once we got her all in, I was so happy for her! …
Last November, Lydia had a sleep study done – you can read about that HERE. After the sleep study they recommended she get put on oxygen. This was a hard blow for us. We also scheduled an appointment with an ear, nose, and throat doctor as well as with pulmonology. Oxygen Welp, it hasn’t been …
This sweet, sweet girl. I wish everyone could have a Lydia in their life. My feelings for our little one are so tender. This last year has been anything but easy for her. As I have reflected on this last year for her my heart has hurt. She has undergone surgery, is connected to a …
I have mentioned it many times before, but sleep is a struggle for Lydia. It always has been. And things have definitely been difficult lately with that. We started using melatonin in September and there was hardly any change. Lydia would fall asleep more easily, but other than that, it was the same routine. Usually …
This month marks six months since Lydia was diagnosed with Rett Syndrome, and honestly, it might as well have been six years. This has been the fastest six months and yet, I honestly can’t hardly remember life before. So much has changed that sometimes life feels foreign to me still. I have been thinking about …