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.

Sarah-Hope gets given an iPad!

We decided that an iPad would be a good investment for Sarah-Hope. We know that she is physically limited, and fortunately there is so much that technology will be able to help her with given the time that she has been born into. Many toys for babies require a fair bit of strength in order to push a button in order to generate some kind of response. While Sarah-Hope’s hands are much weaker than those who have the benefit of having the full structure of upper and fore arm bones and all the muscles and joints inbetween, the one action she can easily do is swipe - so the touch screen of the iPhone or the iPad is totally accessible for her. Another bonus regarding the iPad is that many children with physical disabilities require specialised equipment to help them – however, the use of this equipment adds to the barriers between them and other kids. The iPad, however, is used and enjoyed by everyone which really helps to mainstream and integrate children with disabilities.

I put the word out that we were looking to get Sarah-Hope an iPad to see if anyone might have a second-hand one to sell us. Amazingly, we had about 4 people offering to give her iPads within a couple of days! The first person who responded, however, was a lady from the UK who used to live and work in Cape Town. She had recently been blessed financially and said she would love to get Sarah-Hope a new iPad 2 from the UK! We were totally blown away. She bought the iPad and sent it to SA, just in time for Christmas. What an amazing gift!

After making sure it had a really good cover on it (has to survive a teething toddler!), we've had such fun introducing Sarah-Hope to her iPad! We are really looking forward to a lot of fun with this in the future...

Celebrating Sarah-Hope

On 9 December 2012, our church held a special celebration service for Sarah-Hope. It was truly one of the most significant and joyous days of our lives.  We had gone into her birth with a memorial service planned – this was advised, given Sarah-Hope’s poor prognosis, and we had taken it on board since we didn’t know what state we would be in after the birth but knew that we would want to do something to acknowledge her life. Given all the other preparations for the birth, it took precious time and energy to think about who we might invite, what songs we’d like sung, what we might say etc. We decided that should she survive, we’d still like to have some special type of thanksgiving for her. We approached our pastor to ask him if we could have such a service at our church, perhaps on a Saturday. He then asked us if we would be prepared to do it on a Sunday morning as he thought it would be good for the church to hear our testimony. Our church has over 1000 members so even though many people do know about Sarah-Hope’s extraordinary life, many others do not. And since this is a community she will be growing up in, we could certainly see the value in introducing Sarah-Hope to the rest of the church.

We waited until Sarah-Hope turned one year. This felt like a significant milestone as ‘infant mortality’, defined as the death of babies less than a year old, was one of the outcomes we were preparing for but had also escaped. We invited many people we knew – letting them know that our morning service was going to be dedicated to celebrating Sarah-Hope’s life, that we would both be sharing along with our pastor and we’d love them to be there. We were so humbled by the amount of people who came, recognising the impact that this precious daughter of ours has had on so many people’s lives. Our church was so generous, not only in actually setting aside a whole service to celebrate Sarah-Hope, but they laid on a special reception for all our guests afterwards… we arrived empty handed, with all the people we could.

For us, apart from the joy of having so many loved ones with us that day, the day was about acknowledging all that God has done in the last 18 months, and also about preparing a community for Sarah-Hope. Understandably, given Sarah-Hope’s extremely rare condition and disability, people would have fears about how to relate to her and how their children might react to her - this is not something people are exposed to everyday, especially in South Africa’s extremely divided society. We are very aware that we need to help build those bridges with the community around us in order for Sarah-Hope to have the opportunity of growing up known and accepted for who she is.

As we thanked people for coming, the overwhelming response of our guests was that they felt it such a privilege to share in this special day with us. We were blown away by how moved people were. In this world, a child with disabilities would be considered ‘lucky to be included’ by those around them. But on this day, the community around Sarah-Hope felt ‘lucky’ to be a part of her remarkable story.

Below is what we shared at the service. The audio of our testimony and the sermon can be accessed on http://media.jubilee.org.za/Jubilee/Sermons/SVR_Sarah_Bergh.mp3

_____________________________________________

Richard

This is my darling girl, the gorgeous Sarah-Hope, who was born exactly a year and a week ago.

The 2^nd of December 2011 was without a doubt one of the most significant days of our lives. Sarah-Hope’s birth and life has had such a profound impact and in preparing for this morning it’s been wonderful to take time and reflect on the path that Leigh and I, and others, have walked with her. In many ways I’m just like any dad who, despite having had to give up his man cave and embrace the surreal world of sleep deprivation and nappies, knows beyond a shadow of a doubt that their little girl is the brightest, the cutest, the most beautiful and indeed the best of all little girls anywhere in the world. And yet there have been some unique aspects to our journey as well as many rich lessons. It’s our joy and privilege this morning to share some of our story with you. It’s a story about challenge and complexity, unexpected joy, incredible kindness, family, community, faith and above all, Hope. Hope that sustains, hope that carries, hope that shines through in dark and lonely moments, hope that makes sense of confusion and hope that perseveres.

The first time we saw Sarah-Hope on a scan was an amazing experience. At six weeks she was a tiny, perfectly positioned blob pulsing with glorious life. We were transfixed and so full of expectation for our first child.

The second time we saw her on a scan was more like being hit by a truck. We were told that at 13 weeks our little girl was in a terrible condition...her whole body severely swollen, missing most of her arm bones, and with possible organ malfunctions including a heart defect and severely compressed lungs. We were told that it was surprising that she was still hanging on, that she had no chance of survival and that it was likely to be over in a matter of weeks, if not days. It was absolutely devastating news.

After the scan we were privileged to be able to retreat to a family holiday house and for ten days it was literally all we could do to get out of bed. Some days I don’t think we even managed that.

As the shock wore off fear crowded in. We were afraid of our child dying. How would we experience that? Would her body be terribly disfigured? How would we cope with the grief? Would we ever have the courage to try again?

We were also afraid of our child living. In some ways, more so. How would we cope with the demands of having a disabled child? How would our marriage survive? What would the impact on our family and community be? How would we cope with prejudice and misunderstanding? What about the medical costs? What about our lives? What about our hopes, dreams and plans?

At times I wondered whether it wouldn’t be better for her to go straight into the arms of a loving God, in a place where there are no tears and she would be free of her broken body. At other times I was desperate for her to live, even if it was just for a few hours, so I could at least meet her and hold her.

Early on we realised that we had to make some courageous choices and we decided to value, embrace and celebrate her life, even it was an unborn one. This included having a special pregnancy shoot, naming her and me running the Table Mountain Challenge for her.

As Leigh’s pregnancy progressed we were confronted with increasingly complex and difficult choices. Not terminating was one thing, but what about the level of medical intervention? We grappled with the complexity of knowing that our decisions, no matter how sincere or well intentioned they were, had the potential to artificially prolong her suffering, or to worsen her disability, or to deny her a chance at life. And that we actually had no way of knowing for sure, either before or after the event. We weighed heroic intervention against a good death. We consulted, we read, we prayed, we debated, we agonised. And we came to realise that ultimately her life, and ours, was in God’s hands and that in the end, all we really could do was hope in His love. It was an intensely humbling time.

Against all odds (literally), Sarah-Hope reached viability and carried on till a Caesar, just short of 37 weeks. Even though she had gotten this far she was still given little or no chance of survival, her lungs still appeared to be very compressed, and the best we were hoping for was a few precious hours or even days with her.

The birth experience itself was almost surreal. We were totally at peace, the medical staff took great care of us and absolutely miraculously Sarah-Hope came out pink, feisty and ready to go. After the APGAR test and cutting the cord I was handed my precious little bundle. Everyone stepped away and it felt as if I was totally alone with her in the room. As I held my daughter, the most intense and incredible love for her flooded me. A love that was fierce and jealous, a love that felt like it was trying to jump out of my chest, smash through the wall and roar down the corridor holding her triumphantly aloft. It was an utterly profound moment that has lived with me ever since.

Now when I hear about God’s love or His father heart towards us I see it in a new light, more real, more emotional, rawer, and more powerful than we could ever imagine. A love that delights in us and that dances over us with singing. A love that reaches us where we are and that doesn’t depend on our performance. A love that cares deeply and joyfully sacrifices. A love stronger than death.  And I’ve also seen how the beauty of compassion, empathy, forgiveness, humility and generosity can bring deeper fulfilment than any form of entertainment or achievement.

We are often asked how we do it. How do we cope with the setbacks, the difficulties, the vulnerability, the complexity, the pressure, the questions and the uncertainty?

On one level we’ve had incredible support from our family, our friends and our church community. We have received wonderful, thoughtful gifts; we’ve had meals provided for the first 3 months; we’ve known the kindness of strangers; we’ve received anonymous gifts which have helped to cover significant additional medical costs, we’ve had incredibly kind and positive responses from work colleagues. We have been loved, cared for and carried by an array of friends, family, colleagues and church community. The Paralympics and all that comes with it have also been fantastic.

But as wonderful and as necessary and as much of an absolute privilege it is to have all of these things (which we certainly don’t take at all for granted)...when it’s 3AM and you’re alone in a room with your child, weeping over her handicapped body, cut to the core over the suffering that you know she will experience, it’s not enough. When you’re next to her hospital bed, with the ventilator chugging away as her confused, morphine dulled eyes plead with you, it’s not enough. When you lie awake at night considering the medical challenges still on the horizon or whether she’ll cope with schooling and whether she’ll have friends, it’s not enough.

Soon after the 13 week scan I read a portion of scripture which says, “And we rejoice in the hope of the glory of God. ³ Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; ⁴ perseverance, character; and character, hope. ⁵ And hope does not disappoint us, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us”.

The glory of God is something to be hoped for and chased after. If we pause for a moment we see and feel glimpses of that glory. We see it in creation, we experience in moments of genuine community, feel separation from it through pride, petty jealousy, and unresolved conflict and we feel it most in those fleeting moments when we feel most fully alive.

The rejoicing in our suffering is a bit harder to swallow. It’s not something we aspire to. But suffering is an integral and unavoidable part of the human condition. Although it has the potential to leave us bitter, angry and isolated, when responded to well suffering can draw us into deeper community, rescue us from complacency, strengthen our humility, give us perspective and build our faith.

In many ways the fears that Leigh and I face are exactly the same as those of any parent...will our child fit in, will they find their thing, will they be healthy, might they have an accident, will they be safe, will they be happy, will they like us? We find that with the challenges that Sarah-Hope faces, these fears live closer to the surface and we have the opportunity to face off against them regularly. What brings us through is the truth that who we hope in is more important than what we hope for and that He loves us more than we could imagine.

Leigh

Just after we had our 13 week pregnancy scan where all the complications were picked up, we came to church where a guest speaker was speaking on Christianity and convenience. He mentioned how we can adopt a Christian lifestyle because of the value that any person can derive from following the wisdom offered in the Bible. It may help you to be more successful at work, enrich your marriage or raise better behaved children… which is rather convenient. He then contrasted that with the lessons from the parable of the Good Samaritan. A man had been stripped of his clothes, beaten and left half dead on the side of the road… a priest and a Levite, well to do religious individuals, went down that same road, saw him, and passed by on the other side. But a Samaritan saw him, reached out to him and cared for him at significant personal cost and inconvenience.

As a Christian I found this message deeply challenging – because if I was honest with myself, it felt like it had been a while since I had really stopped for anyone, certainly for long enough to be truly inconvenienced by it….  To get hands on, and do the messy and sacrificial work of meeting someone at their point of need. Until that person was in my womb. I knew that this little girl’s body was in a terrible condition…that many would probably want to just cross the road, pretend they hadn’t seen her and walk on. But I also knew that there was an invitation for me to stop, to be inconvenienced by the life inside me. What has been remarkable is how joyful an experience it has been.

Ian Brown, a father of a disabled child says in his book ‘Love’s Outer Reaches’, “The disabled frighten us because they remind us of how little control we have over our lives, how contingent and even undeserved our gifts are.” We can be so frightened by people with disabilities, those who are different or who have great needs. Sometimes it’s because we’re not sure how to be with them and what they are going to demand of us. As Sarah-Hope’s mother, stopping for her has meant that I have had the privilege of spending enough time with her to be able to discover that inside this little body, is the most beautiful person – a deep and caring soul.

And on the other hand, I have been so profoundly impacted by those who have stopped for us. In our modern world, we so prize being able to live out our talents and strengths, having the independence and freedom to do what we want when we want. I wonder if in this self-consumed state, we don’t lose the beauty that emerges in life when we reach out to each other in our pain and suffering… those circumstances which bring out the richness in your marriage, your relationships, and faith. There are so many people– our church leaders and community, doctors and therapists, and many friends and family who have made such a special effort to join us here today… who have stopped for us. We have been so humbled and incredibly fortified by the prayers, love, messages and practical support you have given us. Some of these people we have known all our lives, some people we have only just met. Thank you for the kindness you have shown us. And for joining us as we’ve been determined to celebrate Sarah-Hope’s life for as long as we have the privilege of being a part of it.

What is Sarah-Hope up to now? Richard, says to me “I am so proud of my girl. She is starting to impose herself on her environment!” There are two positions you are most likely to find her in – she’s a superb sitter and has incredible trunk strength and flexibility which she uses to get her hands to objects in order to explore them.

 

 

And she is also a rock ‘n roller. The way she moves through space at the moment is to roll across the floor, which she can do at quite a pace, reach up and explore the world with her feet.

What will the future look like for Sarah-Hope? We have no idea! As overwhelming as this can seem, we have total faith that in the same way God has already guided us through so much uncertainty and complexity in the last 18 months, He’ll show us the way as and when we need it. Because of Sarah-Hope’s challenges and frailties, we have to accept that her development path will be different. And difficult.  It is our responsibility not to shield her from this, but to prepare and equip her to meet it well and to find the opportunities that lie therein. We totally acknowledge that it’s likely to make us all feel uncomfortable but again, we believe that if we embrace the inconvenience, great learning and richness will result for all. We expect the journey to continue to be full of many hilarious moments, tears, deep challenges, personal change, inexpressible joy and love.

Most importantly, as Sarah-Hope’s parents, we want our family to be a context in which she comes to know that which each of us need to know:

-  we are accepted, because Christ has accepted us

- despite our imperfections, God’s love for us gives us tremendous  dignity and value

- we are embraced, enjoyed, delighted in, celebrated and cheered on

- God is worthy of our trust and full confidence. He is the One able to save us, provide for us, and do more than we could ever think or imagine concerning our lives.

Sarah-Hope has turned one!

Today is Sarah-Hope’s first birthday!

We had a really quiet day - I wanted to have the space to think about that amazing day a year ago, the hours preceding and after the birth, the outcome, and the time that followed… and upon this reflection write to my daughter. Here is some of what I wrote:

“Dear Sarah-Hope

As you were born into this world, I looked on. I saw this little soul, with the most exquisite blue eyes, and wondered what your life would bring to mine.

You have been so kind to me all year. The number of times I have had a sleep and you have just sat there watching and waiting until I was done… so patient. I look at you and know I am so lucky to have a child with your beautiful nature. Your eyes reflect a soul that is deep, and I know that you will be one the best friends that I have in this life. In some ways, it’s quite a road that I have been called onto as your mother. But I also know that the great reward of this road is you – that I know you, enjoy you, and treasure your company for as long as possible!

You are content, aware of your environment and look right into the core of people. There are so many things one could say about all the physical progress you have made, Sarah-Hope (You are my rocker and roller, mover and shaker), but the most important is that I love the person you are. I love having you in my home. I am extremely proud to be your mother. I know God has a great purpose for you, and I am trusting that He will be gentle with me as I aim to prepare you for that. Your life is a huge gift to me. You have rescued me from shallow pursuits and elevated my life to something with eternal significance, real impact and beauty. Thank you for arriving and staying a year ago. Thank you for being so gracious with your mother and not fussing. Thank you for being such a brilliant communicator, thank you for engaging with your world, well done for making so much progress, thank you for your love… and we’re definitely still working on the snuggles but I think you’ll get into it!

Love you.

Mom”

9 month update

Sarah-Hope has recently turned 9 months. With the recent conclusion of the most well-supported and high profile paralympics in history, we are so grateful that we have the opportunity to raise Sarah-Hope at this time in the world!

Superb sitting

We are so proud of Sarah-Hope - she's sitting unsupported, but not unsupervised! For a few months now we've been putting her into a box supported by cushions right up to her chest to give her the experience of sitting... and with the "table top of cushions", she has a surface which her hands can reach and interact with objects. Her legs are strong and dominate her interactions. One of the reasons for this is that she can use her legs to reach out, touch and sometimes pick up an object that is in her front line of vision. We've found this "time in the box" to be important because her legs are hidden away and she can focus on touching objects with her hands and mouth. She has developed really good mobility in her shoulders and with strong neck and back muscles she can use her hands and mouth to explore what’s in front of her. And if she’s on the ground, Sarah-Hope rolls and rotates to get her hand in range of something that she'd like to touch. It seems that all this work her trunk has to do contributes to her strength for sitting. She has become much more stable over the last few weeks as well - we can take for granted how much we use our arms to balance! Initially she would topple over if she suddenly played with her feet excitedly or if she started sucking one of her fingers... but she's working out how to do it all together now. And a friend has kindly lent us a tyre that she can sit in the middle of... and safely topple over to any side if needs be, it's wonderful!

Growing, feeding a little, and platelet count improving incrementally

Just after Sarah-Hope turned 6 months, she picked up a respiratory virus and was sick for about a month. With breathing difficulty, she refused to drink from the bottle, but amazingly through straight tube feeding gained a kilogram in that time! We've kept her milk feeds at the same level for a few months now, hoping that perhaps straight hunger would give her an appetite for solids... while we're delighted to report that she is now eating a whole ice-cube worth of real food from a spoon each day (yahoo!), she must be using her calories well as she just keeps getting bigger! And this has no doubt added to her strength and development.

Sarah-Hope is easily making a 2 week stretch between platelet transfusions now. Just after she was born she was getting these about every 9 days, so we're delighted with the improvement we've already seen in this. Drips are going in pretty easily (into her foot or big toe!), although she certainly makes her displeasure regarding this procedure known to the paediatrician and nurses!

And parenting?

We’re really lucky as Sarah-Hope is an easy baby and we're so enjoying her. Leigh specialises in the therapy and development programme... Rich, of course, specialises in pure play! We’re thankful for seeing so much progress and are excited about what the next few months hold.

Update - Sarah-Hope is 6 months old!

Last week Sarah-Hope turned 6 months! Its been a wonderful to see Sarah-Hope develop over the last couple of months - she's pretty easy going, increasingly friendly and becoming a little chatterbox (she makes a great Darth Vader  impersonation)!

Child development for a different body

Initially, when reading about the next developmental steps being "hand eye coordination and reaching out and grasping objects", we were a bit discouraged (!), but with the help of a physio we're keeping an open mind about Sarah-Hope using her feet for many activities that would usually be done by hands. For instance, she has a kicking mobile, and we're trying to introduce her to the piano by banging her feet on it (thank goodness my grandmother's not around to see it!). As for her hands, the aim is to help her develop the most functional grasp possible over time. This may mean hand surgery (consulting with a surgeon later this year about that) but in the meantime we massage her hands every day to keep them soft and open and she wears cute little gloves to keep her thumbs out of her palms. We deliberately put Sarah-Hope in front of a mirror (to help her see her hands as they are "next to" her face not in front of it), put objects into her hands and close her fingers over them to give her grasping experiences (see pic of her holding Rich's finger below). For the first few months she didn't seem to realise that she even had hands but we have noticed Sarah-Hope begin lick/suck the tip of her left index finger so she's definitely more aware of her hands now! And we feel so loved everytime she uses her feet to touch us.

Feeding tubes and platelet transfusions

Sarah-Hope's gaining weight nicely, doubling her birth weight in her first six months of life. She is still dependent on her feeding tube - this has now been switched to a "mic key button" which is like a valve on her tummy to which we now attach a tube for feeds. As she starts eating solids, the hope is that she'll consume more calories orally, but this will take time. We tried getting her going on solids early, but Sarah-Hope's mother has not been particularly successful at this, despite putting on elaborate entertainment shows for her daughter in the hope she'll open her mouth!

Platelet transfusions occur about every 12 days. We expect that to be the case for the first year of life at least, after which there may be improvement.

Next steps...

The next developmental steps, like sitting, will be interesting given that Sarah-Hope doesn't have arms to break her fall... and if she does, her low platelet count could mean some nasty bruising! She needs to have a very strong trunk for stability so we'll be making sure she does a lot of tummy exercises... This is going to be quite something - tiger mom in action! People often ask whether prostheses would be helpful, but it apparently people find it easier to adapt and use other parts of your body "more", instead of prostheses which just get in the way. Its going to be fascinating to see Sarah-Hope 'find her own way'. We had a great time meeting Nicky Abdinor this weekend. She's a psychologist who doesn't have arms but lives independently in Cape Town and drives an adapted vehicle (www.nickysdrive.com)... what an inspirational woman!