Rett Syndrome

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 …

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 …

Oh this little lady. This last month has been a doozy. It has been a long one. And to be honest, this particular event was something I didn’t even want to think about. We were first approached about getting a G-tube for Lydia last spring. And I did NOT want it. I hated the idea …

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 …

Three Month Lydia Update: It has now been three months since Lydia’s diagnosis and it feels so much longer. If I were to give one word to update on where we are at three months in, it would be OVERWHELM. I am so overwhelmed ALL. THE. TIME. Calm Before the Storm The first two months …

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 …

This has been quite a year. Last March, a week before the world shut down to COVID, was the first time we expressed concern about our sweet little girl to our pediatrician. Since then, there has been a DEPTH of emotions. We have been stretched {sometimes it felt to our breaking point}. But this week, …