19 month update

In the last few months, Sarah-Hope’s experience of the world has changed significantly. It has been over 6 months since her last platelet transfusion and she seems healthier and happier than ever before with a great appetite for food and life.

Sister act

Libby is now 5 months and is a very active baby. We have been amazed at how Sarah-Hope has been learning from her already. When Libby gets put in the bath, her arms and legs fly around and water splashes everywhere whereas Sarah-Hope sits quietly and plays with her toys. A few nights ago, for the first time, Sarah-Hope took her leg and began to kick it. Then she did it with the other leg, and then each hand until she had splashed water on herself from head to toe. Libby is also very vocal at the moment and we think this has really spurred Sarah-Hope on! Ever since she’s been saying ‘baba’, she seems to have accepted that Libby is here to stay and is really enjoying her company. 

Hands at work

At around 15 months, Sarah-Hope started grasping and picking up objects with her hands. Prior to that she was enjoying using her hands to explore the world with a touch, feel and tap – but now she is actually grasping. One day I saw her pick up a card and shake it around a bit, a while later she was observed picking up a ring (see how chuffed she is with herself for this achievement in the picture below!), then rattles ranging from light to heavier in weight, to some small balls (waterpolo type grasp with the one hand)… and so, a whole new world of exploration and play has opened up to her. It’s also great to see such a difference in her hands which were quite closed at birth and are now much more open and ready to interact–it’s great to see her stretch her thumb out of her palm in order to get it around a little ball or toy.

Recently I was reminded how grateful I should be about this. I was describing Sarah-Hope’s upper limbs to someone who asked if her hands are functional at all (as opposed to being little appendages). I hadn’t even considered the other extreme but the fact that these little hands, which have shortened fingers and less strength and flexibility than regular hands would, are so ready to interact with the world around her is wonderful.

Using her hands still seems to be Sarah-Hope’s first preference. She uses her feet to gather objects, tilt them upwards and then she bends down to enable her hands to pick them up. It’s been great to see her ‘carry’ toys or objects too – this is done by holding a ball, for example, between her feet and then shuffling forward with it, or ‘dribbling’ (think hockey or soccer) a ball or toy. I’ve also seen her carry her doll along by hooking its head underneath her knee as she shuffles forward… interesting pretend play! She’s started admiring herself in the mirror as she brushes her hair, is most amused as she picks up our cell phones and puts them to her ear as if to talk, is delighted to push the buttons on oupa’s TV remote to change channels and loves to put the dummy in and out of her baby sister’s mouth! 

iPad to the rescue

Something that was causing endless frustration was her desire to scribble. Sarah-Hope would pick up a pen in one hand, a piece of paper in the other and want to bring them together. We initially struggled to find a way for her to "make a mark". We then found a small magnetic board whose pen was very responsive and this was very rewarding.

We have since tried some drawing applications on the iPad. She has used her fingers on the touch screen as well as now introducing the stylus. She has no problem using this, although it would be better to try and increase the length and thickness of the stylus for a more comfortable grasp to get her face / body further away from the iPad.

I had forgotten how many toys Sarah-Hope has not been able to enjoy because she does not have enough strength behind her hands to elicit a response from buttons. This has got me excited about finding the virtual equivalents on the iPad. My hope is that the satisfaction from achieving certain things on the iPad would stimulate her to try them in the physical realm, such as completing puzzles, colouring in, etc.

Socialising

Sarah-Hope is very much out of the isolation space she was in last year and into one of increased socialisation. She is smiling more (even though she is definitely a more serious than smiley child!), has the cutest little wave which she is using more often now to say hello and goodbye, and she thoroughly enjoys watching other children play, which spurs her on to action.

 

“I like to move it move it”

Sarah-Hope started bum shuffling a couple of weeks after Libby’s birth. It started off being  accompanied by a little grunt to let us know how hard she was working, but is now second nature and she can move pretty quickly, often with a bounce added in when she’s particularly enthusiastic. Her balance continues to improve and she is able to stay upright on a number of different types of surfaces, go down small steps and is currently trying to move “uphill” more and more.

Richard has been determined to teach Sarah-Hope how to fall well, so in their rough-and-tumble play time he introduced the concept of “tuck and roll” where she puts her head on the ground by her feet and then rolls onto her stomach or her back. This has enabled her to change position independently, i.e. move from the sitting to lying position. We’ve seen her move to the mat where her baby sister is lying and then use the “tuck and roll” move to lie down next to her. One of the main things we’re working on in physiotherapy is trying to get Sarah-Hope to roll onto and off her knees to help her change between various positions, thereby building vocabulary of movement she can use as she requires. We are also working to try get her standing on her legs with a lot of support – that’s still going to be quite a journey as her ligaments are very lax and she doesn’t naturally bare weight on her legs.

Sarah-Hope gets cabin fever and likes to get out and about. She takes great pleasure in going to the park in her pram, enjoys moving through space on the swings and down the slides, and she’s loved a few turns on her cousin’s trike and trampoline. Best of all is seeing her really enjoying herself: squeals of delight, determined roars as she charges around on her bottom, and the cutest smile and laugh are finally becoming common place in our home.     

Tribute to Sindiswa

I asked Sindiswa to help me look after Sarah-Hope from the beginning of the year as I was not sure how I would cope on my own with a newborn as well as Sarah-Hope who was having regular blood tests, platelet transfusions and therapy etc. Less than five months later she was killed in the most tragic circumstances. Here is our tribute to her:

I met Sindiswa, as my sister-in-Christ and fellow member of Jubilee Community Church, just over 6 years ago. Shortly thereafter she began helping me at home. She was a woman of excellence who did her best at whatever she put her hand to and so she quickly gained a good reputation and was employed by other friends and church members before taking some time off to have her son Lukha and raise him.

We stayed in touch and a few months after my daughter Sarah-Hope’s birth she told me she had a dream and saw her son Lukha and Sarah-Hope playing and having such fun. She told me that Richard and I must enjoy our daughter as she was a gift from God. How right she was.

In January this year Sindiswa began working for us fulltime. With another baby coming, I was looking for someone who could help me with Sarah-Hope, my one year old with special needs. I told my sister that I knew someone at church who I thought would be the right person. She asked me if I had made this judgement by seeing Sindiswa interact with Sarah-Hope… I said “no, I haven’t seen them interact, but I just know that Sindiswa is the right person”. There was no doubt  in my mind.

I loved working with Sindiswa - we basically spent 7 hours a day together looking after my girls. I discussed every aspect of Sarah-Hope’s development with her, and asked her many questions given that she was an established mother. She showed genuine interest and gave amazing attention to detail in her work such that our contributions to Sarah-Hope’s care were seamless. I had full confidence in her.

Here are some pictures of Sindiswa involved in Sarah-Hope’s therapy:

Sindiswa trying to convince Sarah-Hope to touch the grass with her feet

Sindiswa trying to get Sarah-Hope onto her knees

Sindiswa made an impression on so many friends and family who visited – and the community where we live. In fact, the Chairperson of the Body Corporate came to tell me what an amazing job she was doing when I wasn’t around.

Sindiswa and Sarah-Hope’s favourite thing to do was to go to the park adjacent to our complex. Sindiswa would amuse me with all the stories of what happened in the park that day, what Sarah-Hope had enjoyed doing and how people had interacted with her.  Sindiswa, a woman of dignity, had an incredible way of integrating Sarah-Hope with the other children in the community.

Sindiswa and I were born in the same month, the same year, in the same country, yet we have had such different lives – hers far more difficult than my own. What strikes me the most about Sindiswa was that despite her challenges, she had a gentle and beautiful spirit.

Sindiswa made a lasting impression on my daughter, my family and community. We all miss you, my friend.