The Routine of Caring for a Scoliosis Child!

It has been like a roller coaster since I came to know about my 3 year old child’s diagnosis which is scoliosis and kyphosis. The journey was filled with surprises and uncertainty. We got used to the doctors telling us bad news and how complicated and difficult his case is.

I always wondered: How can I care for him and be there for him? What does he need? After 2 years and half of repeatedly being admitted in hospitals and receiving different spinal curves treatments like casting, bracing and surgery, here is how the daily routine looks like:

Morning time when he wakes up around 8:30 to 9:00 am, we start with brushing his teeth, and bathing and bracing him. Then, I would help him have his breakfast which nowadays consists of boiled eggs and brown bread with cheese dipped in warm milk.

After that, he would go out in the garden and play with his bicycle and chase the cats. It has been a struggle hydrating him. He only drinks few sips of water at a time with lots of chasing and running from my side.

Then he would have a fruit snack at 11.00 am of pieces of orange and grapes.

Later in the afternoon around 1:00 pm, we would sit together and have our lunch. I noticed his independent feeding increases when we eat all together sitting down on the floor in the shape of a circle. What is better also is when he serves himself and us the cooked lunch.

Then at 3:00 pm, he becomes tired and sleepy. That is the time he normally drinks his flavoury milk (either banana or strawberry milk). So we remove his fixed brace and help him sleep.

In the evening around 5:00 pm, he wakes up but very hungry. So immediately we brace him again and normally his snack at that time is fruits, cheese sandwich, oats biscuits and water. At that time, we accompany him to the playground behind our home to watch him running, riding his bike and playing with the slide. The doctors advised to encourage his physical movements as much as he can to help his post surgery recovery process.

When it is dinner time, at 8:00 pm, he likes to join us with whatever food we are eating. But then later around 9 to 9:30 pm, I feed him rice with curry and yogurt when I notice he is still hungry.

Bedtime starts around 10:00 pm. It is funny when the siblings all stick to each other and get so stubborn when it is bedtime. So the trick we do sometimes is we ask all the siblings to sleep together on the same bed (of course king size bed) in my room. This method doesn’t work all the time because they get so hyper and energetic when they are together. So when that trick fails, his older sisters go back to their bedroom and he would stay in my room and eventually sleep.

I can’t say the routine is fixed. Still we face times he needs to be admitted in the hospital when his blood sugar drops down severely to 1.5 because of sudden vomiting or passing loose stool. But at least when we get used to a certain routine at times, it gives me a sense of hope and relief that things are going on track and his wellbeing is maintained.