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!

100 days since Sarah-Hope's last transfusion - learning about platelets and parenting!

Platelet production

Today we are celebrating the fact that Sarah-Hope has not had a platelet transfusion in 100 days! As mentioned in Sarah-Hope’s 14 month update, it was exciting to realise at the start of the year that she might be producing her own platelets and that the year would hopefully involve less transfusions. Sarah-Hope had such bad gastro over the Christmas holidays that she had two transfusions just 10 days apart (due to the infection negatively affecting her platelets) instead of the three week interval we were hoping for. After her transfusion in January, we tested her platelets 12 days later and they were 73 – the best result we’ve had after 12 days. A week later they were 60, which we were really impressed with as that is not a very big drop given her history. We tested 26 days later and they had gone back up to 72, amazing! Then, over Easter she had another bad gut infection which knocked her platelets... but not enough to need a transfusion. We also know that while in many cases platelets normalise by school-going age, her platelets may also vary throughout her lifetime so we're keeping an eye on them. But for now we are delighted to have been out of hospital for 100 days, been amazing timing since we have a newborn baby in the house!

And now what… Parenting?!

With Sarah-Hope being out of the "regularly in hospital zone", life feels rather strange! We got so used to blood tests and hospital admissions - it didn't even feel burdensome, we just did it. On transfusion days I didn't concern myself with her general development, but just concentrated on trying to make the days as fun for Sarah-Hope as possible - her friends Gerry the giraffe and Spot the Dog, her favourite book from Uncle Michael, special visits from Granny Berg (who would keep the nurses on their toes and teach them a few dance steps along the way!) and her many admirers, including the driver who transports her platelets from the blood bank to the hospital and always took time to stop by and visit, would keep her well occupied for the duration of her hospital stay. But now our weeks are no longer punctuated by these events... and in a sense some of the medical cloud we've lived under has lifted. And in the meantime, Sarah-Hope is a toddler, a little girl with emotions and a serious will of her own...  she needs to be parented!

I find it amusing that people think that 'given what we've been through, regular parenting will be easy'! The problem is that because of what we've been through since Sarah-Hope was at 13 weeks gestation, we've never thought about any regular parenting issues! So instead of thinking about how to entertain her in hospital and keep her 'isolated for health reasons'... we’re now starting to think about play on an everyday basis and what socialisation should look like. Instead of how to minimise tears and help Sarah-Hope forget about those needles... we're perplexed about how to handle tantrums and the tears which accompany them. What's probably the most challenging about this is the ordinariness of it all. Previously the dominance of Sarah-Hope's health challenges put us in a space that was quite unique. The goal was simply survival and people respected that. Now we're dealing with issues that are more in the 'general parenting camp', where people have such strong opinions about what you should be doing as a parent (amazing how much energy people have to debate these topics!) even though nothing’s really black and white. I don’t know if it’s my fuzzy breastfeeding brain, or if all these areas are really so grey but I’m used to being someone with such conviction about any topic and I can’t seem to work it out!

On this journey from where Sarah-Hope’s medical concerns dominated to being concerned with the whole of her development path, I’ve been caught by surprise at my reactions to her emotions. I have watched as my daughter gets wheeled in for surgeries, had so many needles and drips inserted into her that I’ve never even tried to keep count, falls over and bangs her head as she works out how fast she can bum shuffle while maintaining balance… and have never shed a tear. But the thought of Sarah-Hope crying because she is sad seems too much for me! I think this is because I know that her journey will be one of emotional difficulty… and while we’re so grateful to be out of that phase where we were going to hospital most weeks, a whole other journey has begun. Loving, guiding and parenting Sarah-Hope through her emotional development is a whole new ball game. And it will require us to be aware of our own emotional health - which is not a bad thing.

Sarah-Hope has become a big sister!

On 11 February 2013, Sarah-Hope’s little sister, Libby Carina Berg was born. Libby means "God is Satisfaction"; Carina means "little darling" and "beloved friend". We loved introducing Sarah-Hope to her sister!

Once we realised that Sarah-Hope was going to be hanging around after her birth, we felt one of the best things we could give her was a rich family life, hopefully with a sibling. We knew that having another child would be really beneficial for her – firstly, we are aware that she’d learn so much from her sibling’s more able/full bodied development process and where her physical difficulties have kept her behind her peers, there will be many things that she can learn together with her sibling considering that they are so close in age. For example, Sarah-Hope’s dietician mentioned that research reveals what a positive role siblings can play in feeding progress for those struggling in that area.

Another reason we’re really excited about Sarah-Hope having a sibling is that we will have an opportunity to learn in our own home how Sarah-Hope can be integrated with more able-bodied kids. Learning how our girls can play together and how Sarah-Hope can be included in various activities will help us to relate to other families and settings which will help us increase her exposure to different environments with confidence.

Of course, the main reason that we’re excited about Libby Carina's arrival is the joy of another life in our home. A daughter, a sister, a friend… for all of us.

We are quite sober minded about the discernment that will be required in order to parent these two girls who will no doubt be very different… let alone just coping with two babies just 14 months apart! But looking forward to itJ

14 month update

Sarah-Hope’s own system of balance

Just before Sarah-Hope turned 9 months, we were celebrating her sitting independently – but not unsupervised! The last 5 months have seen Sarah-Hope become significantly more stable in this position as she is working out her own system of balance.

It is amazing to watch her take her head almost to the floor so that her hands can touch her feet – only to lift herself back upright again with her core strength alone.  I marvel at this because she had basically no abdominal muscles when she was born due to having a severely swollen abdomen in utero!

This mobility in the core is really required to get her hands in a position where they can touch what she’s interested in, and if she can’t reach she switches over to her feet. She clearly understands that her hands and feet (and increasingly her mouth) are what she must use to explore the world around her.

The journey to standing will take some time –in the meantime, we try to give her a few minutes of standing time each day either by holding her up, or getting her to stand in gaitors (to help with alignment) to experience the joy of being in this new position and getting some strength into her legs. Some special friends have lent us their son’s ‘bouncer’ which has brought about many happy hours of being upright and discovering pushing weight through her feet.

Mobility

Up until 12 months her main way of moving through space was to roll on the ground to where she wants to go. It has been quite amusing finding her under all sorts of pieces of furniture as she explores her environment!

From lying on the ground, the side lying position often used to interact with objects around her.

However, as Sarah-Hope is getting older, she prefers being upright and interacting with the world from that position. As with many children who don’t crawl, an alternative is the “bum shuffle”. She can spin around on her bum in circles but hasn’t yet quite worked out how to move forwards and backwards. This will no doubt come soon!

Sarah-Hope’s feeding friends, real hunger and teething

In November 2012 we began pulling back significantly on tube milk feeds to stimulate hunger so Sarah-Hope would eat more solid food, taking in more calories orally – it certainly worked! Sarah-Hope worked out pretty quickly that eating is the way to solve the problem of hunger. I was amazed at the simplicity of this since I had been putting a lot of energy into building associations with eating, including a creative puppet show (Sarah-Hope’s feeding friends… the Delicious Dalmation, the Tasting Tortoise and the Mealtime Moose!) that got put on every mealtime. I got this idea from a mom who found them really helpful in transitioning her child off the G-tube. I still use these feeding friends to create a real sense of fun and anticipation around feeding time even though I’m not sure they’re making her eat any more than usual! The most shocking realisation about seeing Sarah-Hope actually hungry and eating is that I’d been a parent for almost a year, with my feeding experience mostly limited to filling up her stomach with milk when it suited me – oh, the urgency of the hungry and discontent child! Respect to all those parents out there who really have to feed their children through their mouths… on time!

There are also some obvious physical barriers to Sarah-Hope’s feeding, such as her not yet being able to hold a cup for drinking or a spoon to feed herself. Despite this, her dietician has been encouraging independence – where, for example, she would put her head down onto the table where there is some snack and feed herself. I’ve been trying to demonstrate this to Sarah-Hope on a regular basis (yes, it does look ridiculous!) in the hope that she’ll decide it’s a good idea one day! Sarah-Hope is a late teether, with her first two teeth only just appearing in the last couple of weeks (I think, she hasn’t shown them to me yet!). I’m amazed at how the urge to pacify the pain in her gums has driven her to mouth almost anything! I put a piece of toast on her high chair tray and caught her going down to mouth it again and again… hooray! Hopefully the start of more feeding independence! Sarah-Hope isn’t drinking at all – not that she can’t, just that she won’t. We are still giving Sarah-Hope milk through her stomach tube and keep showing her cups, drinking straws etc… but it is indeed true that while you can lead a horse to water, you can’t make it drink! So we’re  just trying to be patient and wait until she decides drinking’s a good idea.  

 

Communication

Sarah-Hope is very clear about what she wants! At this stage she can’t point if she’s wanting something so she does an extensive “lean and look” at an object indicating her desire for it accompanied by some enthusiastic or less enthusiastic grunts. A physiotherapist has recognised that Sarah-Hope uses her neck and jaw muscles to fix herself in a stable sitting position. This means that these muscles aren’t as relaxed and available as they should be for babbling / speech – but she is showing real communicative intentionality so even if she speaks a little later for physical reasons, we’re seeing progress in communication.

Because Sarah-Hope basically doesn’t have arms, I hadn’t really thought too much about her missing out on the milestones of learning to wave hello and goodbye. When we saw people they seemed to greet her as they would any baby wanting her to wave back to them – I was always a bit baffled by this (I mean, what were people actually expecting from her?!). I hoped that she perhaps develop a friendlier face to compensate for the lack of physical greeting gestures! We’re still working out what the bone and muscle make up is of her little arms and hands so only time will be able to tell what function she develops. Anyway, a wonderful lady called Martha has looked after Sarah-Hope a few times and she is into “high fives”. What a hit this has been! Sarah-Hope stretches out her hand (not everyone picks up on it… admittedly it’s not that high!) and you can high five her to say both ‘hi’ and ‘bye’.

Play time

Sarah-Hope is mad about books and could literally turn pages in the books for hours upon hours every day. Next step is to try to get her to slow down long enough to enjoy what’s on the pages! I was wondering whether I should be concerned that she kept on repeating this movement – but a physio told me that when a child with physical difficulties achieves a milestone, they long to perfect it and may do it again and again and again to enjoy the achievement. She doesn’t look like she’ll be done enjoying the sensation of turning pages for a while!

And now that has translated into pure delight in opening anything.

She is also enjoying interacting more with people, and dolls! A friend came around with a gift of a doll for Sarah-Hope. I was stunned – she loved playing with this doll. I realised that I focus Sarah-Hope’s play time according to what we’re trying to achieve in physio / occupational / speech therapy etc… I hadn’t really thought of Sarah-Hope as a little girl who may just want to do the things that little girls do! Much to learn here as a parent!

Platelet transfusions, health matters and development

We have noticed a significant improvement in Sarah-Hope's platelets in the last month - she seems to be producing some of her own! We realised this when we would test her blood, book a transfusion date based on the expectation that her platelets would continue to drop - only to find that they were higher on the transfusion day than when we tested her (even if just marginally!). So this year it looks as though we might be spending less time in hospital for transfusions, although we will keep on the lookout for bruising and bleeding.

While Sarah-Hope isn't mobile, the flexibility of her trunk and desire to explore mean that her hands and mouth are getting to a lot more surfaces than before. Along with this increased exposure comes the reality of picking up bugs and infections as any child would. The last couple of months have seen her get a string of illnesses, including two gut infections back to back. She lost almost a kilogram but thankfully her feeding tube meant she didn't land up in hospital during that period. I've noticed that she seems to have lost some physical strength - but in this period, her fine motor control has really improved. Sarah-Hope uses her toes more, and her hands are not only tapping and touching surfaces but she seems to be placing her hands around objects (not grasping but putting her hands into the position that would be required for grasping). After her evening bath, I do some massage with her to release her trunk, hands and feet from the strain they've been under in the day as they are used in all sorts of interesting and unusual ways - I can tell by her resistance to this how much her muscles are indeed working! It really is fascinating, though, to see how the body adapts and negotiates different ways of doing things.