Hi Friends,
We thought you might like an update on what Stella has been up to since she has been home…We have now been back in Hong Kong for a little over a week- and what a busy week it has been!
Stella has had fun playdates with her little friends and a few walks around the village to let out all her energy! At 14.5kgs, it was a workout to hold her up and keep her balanced on the little hills in Sheung Sze Wan. However, she is much less clumsy since the surgery so it is a lot easier to walk with her and it is now enjoyable rather than exhausting and stressful. She is also a lot more interactive since the surgery, so she is enjoying her playdates a lot more and her friends seem to like her company too.
We also had a few doctor appointments to get her treatment back on course in Hong Kong. There will be no major changes to her medication right now as we are waiting and seeing if her few daily seizures settle on their own. She only seems to have them after waking in the morning (the brain is extremely volatile when it goes to sleep and when it wakes- think of shutting down & turning on a computer), but the seizures are very short and do not seem to affect her. We can live with those types of seizures.
Stella also met with a clinical psychologist at the Duchess of Kent Children’s Hospital- her goal was to assess Stella’s cognitive, emotional, behavioral and physical condition. Her conclusion is that Stella is only a few months behind her peers and she shows no signs of autism- Stella’s seizures, anti-seizure medications and TSC put her at high risk for developing autism. Marcel and I were so relieved and happy to receive this feedback. We are hoping that with the benefits of the surgery and intensive therapy, she can catch up to her peers since the delay is so small. Stella’s most significant issue is her lack of speech, so we will put a large amount of resources and time towards speech therapy for the time being.
Since we’ve been back, we have been in touch with various therapists and hope to get Stella started on intensive therapies after the Easter holidays. A big thank you to Emily V. for helping with that as she has been able to find therapists that will (hopefully) come to our house. Stella’s existing school/ therapists are also working with us to consolidate and prioritize her classes so that I am not running all over town all day- I wouldn’t mind this except that I am also trying to keep our 4 year old’s life as normal as possible. A few other folks in similar situations have also reached out to us, offering advice on how to choose the best therapists and how to economize the therapies.
Unlike a lot of you out there, we will be staying home for the Easter holidays.
From our family to yours, safe travels and have a lovely Easter holiday!
Alison, Marcel, Sophie & Stella xxxx
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