Standing tall at 2 years

We love how chuffed Sarah-Hope looks in this photo with her achievement of standing up on her own. It is extra special having seen the path it took to get here.

At one stage we were a bit concerned as Sarah-Hope seemed to have no interest in getting onto her feet at all. If you put her down on the ground, she wouldn’t even put her feet out – she would go straight down into the sitting position. But suddenly, and most probably due to her cousin Katelyn’s standing, she became motivated to get to the next stage – “up”. Due to bowed legs, some abnormal positioning and really lax ligaments, Sarah-Hope was not very stable on her feet which resulted in some falls but certainly didn’t put her off trying. We would put her in gaitors and a standing frame and entertain her while she put weight through her legs, support her body and hold her hands while she took steps but it still seemed as though her legs were weak and far from being able to support her in a stationery position let alone moving around.

One day, Libby just popped up onto her feet. I think Sarah-Hope was really provoked by this because she shouted “Baba, baba”, got onto one knee, dug her chin into the couch and then used her that to pull herself up onto her feet.  The next step was Sarah-Hope getting onto her feet without using the ‘chin and couch’ method. She managed this by leaning against a surface, such as a cupboard.

Sarah-Hope would spend hours in doorways, making her way up and down the little step.

She would sit on a step and from that position stand up. She worked on this repeatedly on different sized steps/supports…

until the step she would sit up from was as low as the ground. This means that she effectively does a massive squat to get up from the ground – quite impressive for little legs that showed no interest in bearing any weight just a few months before!

The amazing thing about this whole journey is that she worked out her goal, planned her steps and executed perfectly until she had achieved what she wanted. What an amazing gift! In fact, it has really lifted a burden off me, recognising that while help from us and professionals will be necessary, she is determined to achieve what she sets her mind on.

Despite this wonderful achievement, I did feel a little nervous about her now in the standing position – she is so much more vulnerable to falling from being higher up on a smaller base of support. As an aside, I always admire how Rich deals with the falls and consequent bumps on the head. He actually manages to make putting ice on the head fun! He will put the ice on her head. Then she gets a turn to put it on his head. Then the doll gets iced. One night I walked past and became part of this icing ceremony (ouch it was cold!). The main thing we’ve realised is that she is self-conscious of her falls so we need to deal with them but in such a way as to make them (and mistakes, misjudgements, failures) “ok” and an ordinary part of life… with the next step being to try again. Again, Rich is brilliant at taking her back to the place where she has toppled over and encourages her to give it a go and regain her confidence.

When Rich started telling me that she was shifting the weight on her feet as if to take a step I just ignored it. Until a few weeks later, on 25 January 2014, when Sarah-Hope took 10 little steps and said “me walk”. 

Wow! Her physio said “I don’t know how she is walking on those legs of hers!”, and neither did we… but she was, much earlier than I thought. She was so focused, practicing her steps, getting faster, turning around. Libby took her first steps a week or so after Sarah-Hope and Sarah-Hope picked up all sorts of tips such as changing direction, changing the speed at which one walks etc. 

It is one thing for Sarah-Hope to maintain her balance and walk when she is alone – it’s another thing entirely when you have a tactile little sister who is intent on mowing you down and tackling you! It’s been amazing to see her develop skills in this regard. The first one is to drop to the ground onto her bottom if she sees or senses somebody moving past her in a way that threatens her balance. We have also seen her bend over and restabilise in the squat position, “fold in half” by putting her head to the ground and using that to break the fall, collapse onto her bottom with her head on the ground if Libby is piling on top of her, and smartly scoot away to avoid the incident altogether. I feel so grateful for Libby in the development of these survival skills. With other children, both the parents and I would generally intervene before Sarah-Hope gets thrown over, but because Libby is also my child I allow her to ‘climb into’  Sarah-Hope a little. Rich actually spotted Sarah-Hope giving Libby a little tackle the other night and enjoying it!

Here are some pictures of the highlight of each day – rough and tumble with Dad!

Communication

We were really relieved when Sarah-Hope said her first word just before 18 months. Since then we have done some facial massage to ease her head and neck muscles which were quite tight due to her body adapting to it’s own system of balance. Her whole face seemed to change expression and slowly and surely speech began to flow. I have felt quite challenged – you wait for your child to speak… and then when they do, you actually have to listen to them! Although I have known she is not missing anything that is going on, I really enjoy being able to talk to her.

On Christmas day, Sarah-Hope said ‘no’ for the first time. She certainly indicated it before with a little grunt here and there, but it took her turning two to actually get the word. I think we’re rather lucky as Libby had it at 16 months. Now I have two girls saying not just “no”, but “no no no no no no no no”… wondering where they got that from?!

Growing

Sarah-Hope grew beautifully during this time, and I am sure that having a little sister starting solids helped. I did baby-led weaning with Libby so she was self feeding from 6 months old which I think encouraged Sarah-Hope. Previously she would only be spoon fed – but she started picking up food and feeding herself. 

In terms of drinking we would offer her water from one of our glasses. She can drink from a straw, which we know will be a brilliant long term option for her, but it isn’t her preference. 

Initially, I was more concerned about her actually registering thirst and drinking than doing it independently as the tube feeding means that she can be getting enough liquid but in the long term she will need to take fluid in orally. The trouble with a bottle is that although she could grasp the handle with her hand and get her mouth to it if she turns her head to the side, a bottle was usually too heavy for her to lift. I was delighted when she starting playing with a plastic tea set. She could sip from a little cup as the amount of water inside didn’t make the cup too heavy… she was drinking independently, hooray! 

What’s a platelet transfusion again?!

On 15 January 2014, it was a year since Sarah-Hope’s last platelet transfusion. What a milestone! We were optimistic about the interval between her platelet transfusions continuing to stretch incrementally but are amazed and so grateful for the wonderful change in lifestyle it has been not testing blood or transfusing on a weekly basis. Sarah-Hope’s blood test last November revealed a platelet count of 99 which is by far the highest count she’s had. We have watched her platelets dip when she’s been ill, but bounce up again as she’s recovered. Her bone marrow is definitely healthier and producing platelets, and the platelets she has are working well - although her count is still on the lower side, she has “bruised well” which has been a relief now that she’s on the move and up on her feet!

Trike adaption

A special family friend adapted the handle bars of this trike so that Sarah-Hope can enjoy holding on and steering. She LOVES it! It was a great experience as we came up with an original idea but it didn’t work – then spent quite a lot of time with her on the trike and she helped us come up with the current arrangement. It is so wonderful to have her in a trike that any kid would enjoy with a simple adaption to make up for her lack of arm reach. Here are some pics of her enjoying her trike and life in general.

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. 

Sarah-Hope's first word!

We've been waiting for this... and tonight it came: "bubble". Or more like "Bub...ble". Sarah-Hope insists that Richard blows bubbles for her before she goes to bed (she doesn't let him forget!). I could hear him talking to her as he was doing this and saying "bubble"... and then she said it. And then said it again and again. Too adorable! Despite Sarah-Hope's ability to make her wishes clearly known, her expressive language has been a bit delayed so we are thrilled to hear this first word and are looking forward to many more!