It has taken me so long to post a follow up blog post, mostly because during Sophea’s surgery we kept everyone updated through a Facebook group and I didn’t want to repeat the information. However, it is probably best if I begin with that, it is important for other CMD (Congenital Muscular Dystrophy) and more… Continue reading Sophea’s Kyphoscoliosis Surgery and Follow-up
Category: hypotonia
Reality of a Diagnosis
I’ve been struggling with how to begin this blog post for a couple months now. So I thought I’d try something a little different. To open, I asked Sophea if there was anything she wanted to include in our blog and my social butterfly was excited to participate: “I feel very overwhelmed with all of… Continue reading Reality of a Diagnosis
Sophea’s Orthopedic Appointment
December 7th 2017. Shriner’s Hospital for Children. Sophea’s spine appointment for kyphosis, scoliosis, and lordosis. We have waited months for this appointment. We knew what was coming. We anticipated, agonized even, and then tried our best to put it out of our minds to forget what was ahead- what we were sure the doctors would… Continue reading Sophea’s Orthopedic Appointment
Sophea’s diagnosis
Part 2 (You can read part 1 by clicking on this sentence.) This summer we hosted our 16 year old friend from France; I will refer to her as “A”. It is always an exciting time for our family when we host. We generally, go all over the upper East Coast, exploring a little bit… Continue reading Sophea’s diagnosis
Spinning Plates
Part 1 Have you ever felt like your life at any moment in time was a balancing act? Do you know those acts with the spinning plates? The ones they spin on fingers, heads, and sticks? A couple weeks ago, I felt like this was my life. Where each obstacle that was coming our way… Continue reading Spinning Plates
From the beginning; Birth Stories
FROM THE BEGINNING: So we have had a few appointments and health updates recently. But before I blog about them, I think I will start from the beginning, giving a little more background about my girls. January 22, 2005. Our second child was born. A beautiful girl. She entered this world right on her due… Continue reading From the beginning; Birth Stories
MRI with Sedation:
April 25th 2017 – Adylaede’s MRI with sedation. We scheduled it at Hershey Hospital, only 3 weeks after we received the abnormal results of her EEG. (Which you may read about by clicking HERE.) Since the MRI had to be done using sedative medication, she was instructed not to eat before the test. Her MRI… Continue reading MRI with Sedation:
