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 …
Lydia takes on Denver! This week Mark, Lydia, and I were able to go to Colorado so Lydia could attend the Rett Clinic at the Children’s Hospital Colorado. Very quickly after receiving Lydia’s diagnosis and scrambling to find everything we could about it, we discovered that there are several Rett Clinics throughout the country. This …
This sweet little angel is two years old! Time is just flying by and I cannot believe that it has been two years with the sweetest little one. Lydia fills our world with so much pure joy. Her spirit is so strong. I will never cease to be amazed by her. She gives us perspective. …
It has been a month since Lydia was diagnosed with Rett Syndrome and I’ve been having some thoughts that I want to write down. When Lydia received her diagnosis, the thoughts that I shared were completely honest. I felt so much peace about everything. And I am so grateful for that. I don’t know if …