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 …
Lydia’s 2nd Birthday
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. …
New Base Line
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 …
First Day of Nursery
Lydia turned nursery-age during the shut down of COVID and it wasn’t high on my list of things to think about. But when they announced earlier this month that we would begin going back to church for the whole two hours, I realized that it was something we needed to discuss. Mark and I agreed …
Rett Syndrome
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, …
Power Pack
Just two days after Lydia’s EEG, we went down for a different appointment at Primary’s. We went back to the beginning (this was the first clinic Lydia had an appointment with) and had an appointment at the HEFT Clinic. We met with the same gastroenterologist, speech language pathologist, and dietitian. The reason for this appointment …
72 Hour EEG
About a month ago, Lydia went in for her first EEG. The results showed that it was abnormal. Lydia didn’t show a seizure but it showed a “seizure tendency”. We were given a couple options and decided that we wanted to do further testing to see if we could figure out IF there was a …
Stander
The day after Lydia’s ABR, she had a BIG physical therapy appointment. On top of all of Lydia’s doctor’s appointments, she is still receiving physical therapy, feeding therapy, language therapy, and they are talking about starting occupational therapy 😳. It’s A LOT. There’s no other way to put it. But we love Lydia’s therapists and …