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Life

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, …

Life

Easter

“Life will challenge you. Difficulties will come. Heartbreaks will strike. So, wherever you are going, make your way to Jesus Christ first. Remember that His suffering and Resurrection make possible our victory over difficulty and death. Make your covenants with Him and keep them as you journey on.” Elder Jeffrey R. Holland Easter was so …

Life

Spring

I normally love winter – but I have to admit, I am really ready for SPRING! It has been so nice to see and feel the changing of the seasons. I am feeling an inward “rebirth” right now – as cheesy, as that may sound. I’ve been in and out of some dark places this …

Life

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 …

Life

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 …

Life

ENT

When Lydia was getting her ABR last month, the team that was sedating her was concerned that she might have a floppy airway (there is a technical term but I can never remember it!). They highly encouraged me to get Lydia seen by an ENT. Our case manager got right on it and we got …