During pregnancy I barely felt her move. But scans always showed a healthy baby. At 3 months she was diagnosed with Plagiocephaly (flat head) while in hospital for a respiratory virus. So we were referees to to a neurosurgeon, who said it would correct itself and she was dismissed until 10 months when I emailed photos back to the neurosurgeon of how bad her head had gotten. They called us in for an urgent appointment the next day and she was diagnosed with brachycephaly (her head protruded severely on one side from laying on it all the time) and had to start helmet therapy. Other than that I was worried as she was not rolling or sitting like my first child had, so I’d been taking her to different general practitioners and 3 Physios, but everyone told me she was just lazy and overweight. The hard thing was, no one was linking the flat head to her inability to move. I felt like I was going crazy in this period. Finally, at about 11 months I took her to see an amazing paed listened to me, and as soon as he picked her up he said “she has low muscle tone” and diagnosed hypotonia and the diagnosis process started (genetics, referral for an MRI etc).
Definitely our Paediatrician for the diagnosis, but my biggest support network came from other parents of hypotonic kids. I learnt so much from carers who had older hypo children, through support groups I found on social media. Now I’m the person other people ask for help! It’s nice to have a group of people that you can reach out to. Even if they are on the other side of the world. This is why I started her Instagram and YouTube channel, and I get messages all the time from parents all over the world starting a similar journey with their child.
Listen to your gut and don’t stop pushing for answers. Reach out to other parents who can relate to your journey and ask them all the questions! Research and look for therapists that really understand your child’s condition. For example, I know now that paediatric Physiotherapy is completely different to adult Physiotherapy, and unless the therapist has experience with hypotonia, often dismiss it as laziness etc. After hours of sleepless nights researching, I found clinics that understood catered to what she needed. For my girl Cuevas Medek Exercise (CME therapy) was the game changer. Surround yourself with people that you can be open with. I found play dates to be hard (as I’d often see what other children Summer’s age could do, and it would leave me deflated and almost angry that my girl struggled so much). I now hang with lots of parents of special needs kids (or friends who I’m really comfortable with). It’s like finding a whole new tribe of people that get you and your child. And lastly, be kind to yourself. You’re doing a great job and even in the hardest times, I’ve been able to look at my girl and know she’s just perfect. She’s made me into a much stronger person, and every time I see her do something new, it’s like my heart explodes with happiness.
Below is a timeline of MyPerfectGirl’s observed symptoms, diagnosed conditions, and treatments and therapies.
Diagnosed at 1 year
Began at 1 year