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!
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.
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