Settling realities that will require everyday effort in 2019

Sarah-Hope has not had a bad year health wise but she definitely has not had the capacity for the full school week. On a good week, she spent one to two days at home resting. Her body has to work hard to keep up with the school routine so it makes sense that she is more tired than others. But because her immune system isn't the strongest, she also takes a longer time to recover when she does get sick. Knowing we were going to have to see how she managed keeping up at school, we had a flexible arrangement whereby her facilitator could come and bring some school work to her at home on days where she was strong enough to do some "work" but not at school. This was great because she wasn't so disconnected from what had been happening in class and when she did get back to school she could catch up quite quickly. Sarah-Hope's development is never linear - even if she is resting or ill she takes in a lot and processes her world and then bounces back as if she's been practicing in her mind while she didn't have the physical capacity to act it out. Something I have learnt is that if Sarah-Hope is well, she wants to move independently, participate and engage with friends. Its always a flag for me if her attitude towards this changes - she may just need rest, and if she doesn't get it she is likely to get sick in which case we need to patiently build her up from dependence to more interdependence again. I have become a bit of a "rest policewoman" as a result but it just is the reality of our capacity and after all we've been through, I am so used to plans being cancelled that I go into autopilot and reprioritise the day or week or month ahead. I actually see this as a gift that I have to often take the foot off the accelerator, slow down and think again about what to prioritise in order for the whole family to flourish.

Sarah-Hope wasn't hospitalised this year, and had no gut trouble at all. In fact, she has been drinking and eating orally with no nutrition supplemented through her stomach tube and has grown well. She still has her mic-key button which I keep as a back up and for medicine (makes it so easy!). She still avoids dairy (severe milk protein allergy suspected) and gluten (precautionary) and eats a simple diet but has a great appetite. Sarah-Hope has been more constrained by her chest, however. She had very undersized lungs in utero which contributed to her having such a poor prognosis. But her lungs have grown! Upon assessment recently by a paediatric pulmonologist, she was happy with her lung function for a seven year old. However, she wasn't as happy with her air flow. Sarah-Hope underwent a scope to see if her anatomy was perhaps contributing to this. Her left pulmonary artery appeared to be constrained and although there isn't obstruction as such, it is possible that the clip used to repair her heart as an infant is now obscuring the artery. So we're experimenting with a change in chronic medication, using the bronchovibe every morning and evening and a longer term antibiotic with anti-inflammatory properties to see if her lung health improves and her breathlessness and recovery times reduce.

The most significant challenge this year for Sarah-Hope has probably been decreasing mobility. From the triumphant walk across the playground the day before school started... we found that months later she was struggling to stand and put weight on her one leg and walking was not possible on her feet. A family friend who is a physio gave me a perspective about the way she has adapted for functional purposes which I found quite helpful - she has become accustomed to using her one leg as a lower limb, and the other as an upper limb. One leg she can stand on. This is what enables her standing transfers - her weight is all on one leg and she puts out her toe of the other foot to balance. The other leg is her upper limb. Her ligaments are hyper flexible which is amazing because is allows for the passing of goods from the ground where her foot is to her opposite hand which is where her shoulder would be. However, with this repeated movement, her femur actually "slips over" her lower limb bones  given that she doesn't have a stable knee joint. Its a helpful reach function for her - but the impact of that repeated movement on her limbs isn't great for the standing / transferring / walking function.

So what is transpiring is that (when we execute this as we should) she has been walking on her knees, covered by knee protectors (super flexible skater knee pads), and uses her wheelchair for transport where there is wheelchair accessibility (school, church etc). 

 

In our home, we've been trying to create more floor space so that a wheelchair could be used. However our living space is small and so Sarah-Hope is not covering large distances inside so would prefer to walk on her knees rather than move the chair through the space. We've recently adapted a ride on toy for her to wheel herself across a floor space at home or elsewhere to try keep her off her knees and protect them. Its much lighter and could be taken easier to another home whereas the wheelchair is heavy and needs space and ramps into other spaces because it is around 70kg. This is still a work in progress.

 

What has been difficult though is to see the toughening up of her knees as they effectively become like another 'heel', multiple skin layers rubbing off through the pressure of carrying her weight and her knees raw. We've wondered about plasters but the way her knees work as both feet, knees and elbows, no plasters stick, and then she resists them at the thought of the pain of removing them. And what I've discovered this December holiday is that it takes one thorn in the wrong foot or sting on a leg to collapse her as she really can only stand on one leg which makes her quite vulnerable to immobility. The plan for the year ahead is to get a full assessment of her knees. We think the knee cap is missing or displaced but there could be a lot more 'wrong' as well. So we're hoping for clarity (it will probably take an MRI as this kid has some funky anatomy!), after which we can figure out the best way to help her stand and make transfers.

 

What was really encouraging was hearing how Sarah-Hope was participating in the classroom, basically on par academically with her peers. Before the  end of her first term the team felt confident that she would be progressing to Grade 1 in 2019. Her written expression of her knowledge is obviously not the same and in time we expect technology to play a more significant role in helping her - but not until she's tried what everyone else is doing first! Then as she is struggling to keep up we predict she will be increasingly ready to adopt the assistive devices or whatever the solution may be. I imagine this will be the big challenge of the foundation phase. For the first time she made a comment to me at the end of the year saying, "Mom, the other children are MUCH better at drawing than me, MUCH better. Its not fair." I know she feels valued and supported, but amazingly I am usually surprised when I hear her vocalise this kind of disappointment at her "work" not looking like that of others. I imagine Primary School will give us many opportunities to process these emotions, and then to regather ourselves and focus and delight in what she can do.

What has been significant about this year is the shift from one hospital crisis to the next... to the reality of the main issues that we have to deal with, and the unavoidable everyday workload that will be required to push through and make progress in these areas. This next phase is going to take us on a whole new journey of growth, of that I am sure!